XMRV and antiretrovirals

H/T to The Lay Scientist for getting my butt in gear to write this post.

Imagine you arent feeling well. You go to the doctor, they run some tests, and it turns out you have a tumor. Well… your physicians arent sure if you have a tumor or not, but they sent some of your blood to a lab, and a non-FDA approved test said you might have a tumor. Maybe. When your blood was sent to other labs, they couldnt find anything.

And even if you do have a tumor, you have no reason to believe that its actually causing a disease– it very well could be benign. They dont know how its effecting you, if at all. Technically, they dont even know where it is.

But good news! They have a drug that works on these kinds of tumors in tissue culture… but no one has tested these drugs on your kind of tumor in small animal models, much less non-human primates, much less valid clinical trials on humans.

And even if you take this drug, there is no way of objectively measuring whether it is working or not. Technically, it could be making the tumor worse, but again, we cant measure ‘better’ or ‘worse’ objectively, so…

Oh, and btw, the drug they have to ‘treat’ you has severe side-effects. A ‘successful’ treatment course will almost certainly ultimately lead to liver and/or kidney failure (assuming you arent hit by a car before then), plus a host of other side effects along the way.

Would you take this drug for your ‘tumor’?

Now read the text above, but replace ‘a tumor’ with ‘XMRV’. Would you confidently take antiretrovirals?

Far too many Chronic Fatigue patients are, and I will try to explain exactly why this is a horrible, horrible idea:


Antiretrovirals in HIV-1 patients is not a simple ‘hey lets try…’ process. Everything is done with a purpose. Every move is strategic and calculated. Here is a basic basic basic overview. Does that look like something MDs ‘play around’ with?

A layman might think ‘Hey, HIV-1 is a retrovirus, and XMRV is a retrovirus, why dont we give people who are ‘infected’ with XMRV antiretrovirals?’ So lets compare/contrast HIV-1 and XMRV to see why this would be a very bad idea:
1. Viral load– How many viruses are floating around in an infected patient? Right after infection, this number is pretty high. But after HIV-1 establishes itself, some people, by virus and host chance/genetics, can keep their viral loads lower than others. Since viral load is associated with disease progression, if someone is not keeping their viral loads low on their own, they should go on antiretrovirals.

Contrast with XMRV– No one has isolated free virus in ‘XMRV infected’ individuals. No one. Even the WPI. Even Judy Mikovits.

Assuming WPI/Mikovits have super powers and they really are the only humans on Planet Earth that can find this virus in CFS patients, none of the tests they perform are quantitative. Their PCR is straight ‘YES’/'NO’. Their super-duper-awesome-new-1970s method of ‘culturing cells’ (whatever the hell they think theyre doing there) is not quantitative. Assuming people are RIFE with XMRV, there is still no quantitative way to measure ‘more’/'less’ XMRV, thus there is no way to measure the effectiveness of antiretrovirals in XMRV ‘positive’ patients.

How would you know whether antiretrovirals are working in XMRV patients?

2. CD4+ T-cell count– CD4+ T-cells arent just essential for fighting off ‘new’ infections. The chickenpox you got when you were seven, the cold you got last winter, you have CD4+ T-cells that ‘remember’ those infections and help you not get infected again. HIV-1 really likes to infect CD4+ T-cells, and the process kills the cells. That steady decline in CD4+ T-cells is a patients progression to AIDS. If a patient is controlling the viral loads, and their CD4+ T-cell numbers are good, they dont really ‘need’ to be on antiretrovirals. If that number drops, the patient needs to go on antiretrovirals ASAP.

Contrast with XMRV– No one has correlated XMRV to a quantifiable pathology. No one. Ive seen a ton of hand waving and just-so stories, but not a lick of science. Though I must admit, Im particularly amused by the ‘natural killer cell‘ story, but thats another post. Whats the ‘defect’ in XMRV ‘positive’ patients that antiretrovirals are correcting? B-cells not working right? Too much of this cytokine or not enough of that one? There is no way of quantifiably assessing whether the antiretrovirals are doing any ‘good’ at all.

How would you know whether antiretrovirals are working in XMRV patients?

3. Drug resistance– Its gotten to the point with HIV-1, that everyone is tested for drug resistance before they are put on anything. Obviously, why would you give someone an antiretroviral their virus was already resistant too, and drug resistance is increasing in prevalence. There are a series of PCR tests that can be done to look for common resistance mutations, and then you know which drugs you dont even have to bother with, cause they wont do any good. Sometimes this doesnt work as planned, as drug resistant variants are always a minority population within the quasispecies, but generally, it works. If someone who was previously responding well to antiretrovirals (see #1, #2) suddenly fails, we can test for drug resistance to know exactly why they failed.

Contrast with XMRV– Testing for drug resistance pre- and post- antiretrovirals is impossible (see #1). For all we know, these people ‘infected with XMRV’ who are haphazardly swallowing antiretrovirals are breeding drug resistant variants that will fuck over you and me.

How would you know whether antiretrovirals are working in XMRV patients?

4. Side effects– One thing physicians always look for in people taking antiretrovirals is side effects. These drugs screw with your body, so you might have cholesterol problems, or insulin problems, or liver problems, or kidney problems… I mean, if you are HIV-1 positive in the US, you arent going to die of ‘AIDS’ anymore. Youre going to die of liver/kidney failure from the drugs. *shrug* Another constant between HIV(+) people taking antiretrovirals is that the drugs make them feel like shit for a while. Until their bodies adjust to the drugs a bit. A common reason for why people are hesitant to take the drugs is because they hear from their friends/message boards “I wasnt sick until I started antiretrovirals”. Thats so common its a cliche HIV Deniers capitalize on. Antiretrovirals make you feel like shit when you first start taking them (not that staying on them is a walk in the park) (not that not taking them is an option either).

Contrast with XMRV– This is a quote from someone in Canada who is taking a random collection of antiretrovirals at some arbitrarily chosen dose because she has been convinced by ‘scientists’ and administrators at the WPI, and their marketing, that the cause of her disease is XMRV, and an irresponsible MD is willing to prescribe them to her:

the wpi has knowledge of 3 people in the US on azt 300 mg for CFS. they noticed improvement in 2 weeks (i am sure they were XMRV+, though)

Weird how AZT appears to have a totally different effect on HIV-1 people than XMRV people, huh? But even assuming its true, I fully encourage everyone to read that entire thread to see how ‘successful’ randomly taking antiretrovirals has been for these people. The OP recently left a comment on ERV about how AWESOME she is doing. It appears that was a lie.

That thread. The threads like it there. This blog.

They are horrifying.

And the fact idiot physicians are happily prescribing these medications…

And the fact it is totally legal, apparently, for Annette Whittemore, Judy ‘The Bartender’ Mikovits, and the Whittemore Peterson institute to terrorize people with XMRV diagnoses (outside of a research setting, with no definitive proof of the virus or that it causes disease*) and support uncontrolled, unguided drug experimentation on these people (not really, though, **WIIIINK!!!**).

Its horrifying.

This is all fucking horrifying.

There is no objective way to measure whether/if antiretrovirals are doing anything to XMRV ‘positive’ individuals.

* Weird how every reagent in our lab has a huge disclaimer on the box and product inserts “NOT FOR CLINICAL OR DIAGNOSTIC USE. FOR RESEARCH PURPOSES ONLY.” So weird.

Comments

  1. #1 sue
    June 14, 2010

    you quoted one of my posts in your blog entry. you are simple wrong. i am a legitimate, severe CFS patient. i became ill after what seemed like “mono” almost 18 yrs ago. i have not been the same since.

    i have been on antiretrovirals for 2 1/2 months and, i can say now with certainty, that it has made a huge difference for me.

    i had tried many treatments before, including antiherpetics, which i took for yrs. nothing helped.

    i dont think you understand that the people who are taking the HIV meds now are so severely affected by the disease that even a few years of relief – even if it might mean a much shorter lifespan – is much, much better than the hell they are living in now.

  2. #2 ERV
    June 14, 2010

    …i can say now with certainty, that it has made a huge difference for me.

    What are you being tested for to objectively measure ‘with certainty’ that you are improving?

  3. #3 curious
    June 14, 2010

    I’m really curious – why is it that you care so much about this? I mean why do you put so much effort into this? What is in it for you? There’s got to be some reason why your life goal is to disprove this stuff. I’m just wondering what that is…

  4. #4 Joshua
    June 14, 2010

    curious: I’m not erv and can’t speak for her, but I imagine the main motivation is simple compassion. Re-read this post. She’s trying to stop people from taking expensive drugs that will damage their livers and kidneys while doing nothing to resolve their symptoms. Does that explain it clearly enough?

  5. #5 Mu
    June 14, 2010

    That last blog you linked is the worst, the author went for the antiretrovirals after years of antibiotics for chronic lyme. And she’s running her experiments on her daughter at the same time.

  6. #6 Tim
    June 14, 2010

    why is it that you care so much about this?

    Because people put their trust in doctors and medical scientists. And when charlatans abuse that trust, and push phony treatments, people die. And if that doesn’t piss you off, you’re a heartless dick.

  7. #7 sue
    June 14, 2010

    i have sent my blood for NK cell function, leukocyte elastase, and RNase L testing, and i am awating results.

    all i can tell you is, i had this pressure in my head for many years, it felt as if my head was so inflammed that walls were closing in in my brain. i could not reason properly, i had no insight, and very little short term memory. there was no respite for me…painkillers did not help. i also had the bone-crushing fatigue but this was nothing compared to the neurological issues.

    i spent a lot of my time clutching my head, crying, rocking back and forth. mock me if you will, but that is how my life was. before i became ill, i was a civil engineering student at the university of toronto. this has literally destroyed my life.

    i realize this is not scientific proof, but on the HIV drugs, i feel much less inflammation and i have noticed some of my previous cognitive abilities returning. it is excrutiatingly slow, but i do feel definite improvement.

    i will gladly share my bloodwork results with you when i receive them and i would be happy to speak to you privately as well.

    sue

  8. #8 Prometheus
    June 14, 2010

    Curious@3#

    “why is it that you care so much about this?”

    How about I steal your checkbook and buy a thousand lifetime subscriptions to Big Butts magazine?

    Would you care about that?

    That’s what pseudo-science does, it fulfills fetishes for fame and gain while destroying the credit and reputation of the ethical scientist awaiting reproducible results.

    Don’t worry about liver and kidney failure. Regular “Intercept” blood filtration of XMRV by WPI/Cerus Corporation(NASDAQ:CERS)will be giving your organs that needed break.

    http://www.wpinstitute.org/news/docs/WPI_pressrel_051810.pdf

    I wonder how much WPI’s magic XMRV dialysis treatments will cost.

  9. #9 curious
    June 14, 2010

    Joshua,
    Although I appreciate you stepping in – it seems that you have not read all of ERV’s posts. She seems out to prove that CFS is not caused by a virus. I’m just wondering why she is so wound up about this – why it matters to much to her.

  10. #10 sue
    June 14, 2010

    incidentally, my doctor is far from careless. he is actually a prominent infectious disease doctor. i really think he truly believed that i simply could not take the disease anymore. i begged him for months for a 1 month trial of AZT. it made a small difference immediately.

    sue

  11. #11 curious
    June 14, 2010

    Sue-
    Don’t waste your time here. Seriously…
    All I know is that my immune system is as dysfunctional as someone with cancer – very low NK cell activity, etc. I know there is a cause for this. I’m not saying it’s xmrv but I’m not saying it’s not, either.

    But really Sue, don’t waste your time here. ERV is out to prove something.

    Tim-
    You obviously do not suffer form a debilitating chronic illness that has proven very difficult to treat. If you did, you might think about things differently.

  12. #12 Sili
    June 14, 2010

    For all we know, these people ‘infected with XMRV’ who are haphazardly swallowing antiretrovirals are breeding drug resistant variants that will fuck over you and me.

    That’s what bothers me. Otherwise I’m misanthropic enough to let people kill themselves by selfmedicating.

    Sound like we need to push acupuncture and homoeopathy for CFS, Chronic Lyme and the rest of the made up illnesses.

  13. #13 sue
    June 14, 2010

    you people cannot fathom what the disease is like. you are lucky you have the luxury of laughing about it. the illnesse is so horrendous i would not even wish them on you.

  14. #14 Prometheus
    June 14, 2010

    “You people cannot fathom what the disease is like. you are lucky you have the luxury of laughing about it. the illnesse is so horrendous i would not even wish them on you.”

    Your largess is underwhelming.

    In a quirk of cruel fate, two of my favorite people were born with myelomeningocele spina bifida. They spent the majority of their childhoods having or recovering from operations and their adult lives in a soul rending symphony of never ending pain.

    They would never say anything remotely like that.

    Ever.

  15. #15 Optimus Primate
    June 14, 2010

    Sue,

    How is telling you that the so-called cure you’re being fed is pseudo-scientific bullshit in any way tantamount to laughing at you? Who’s laughing? I don’t see anyone telling you you’re not ill. You’re merely being told that XMRV isn’t the problem.

    Seriously, get off your fucking cross. If CFS really is a disease, you’re doing a grave disservice to its study by playing the victim card any time holes are blown in your story.

  16. #16 gf1
    June 14, 2010

    This is becoming a mess… but I’m just about to watch the Directors Cut of Alien!

    @ Optimus Primate: See comment 12 – “Sound like we need to push acupuncture and homoeopathy for CFS, Chronic Lyme and the rest of the made up illnesses.”

    Hmm… I’ve not kept up so well on recent XMRV stuff but this comment section seems to have people talking past each other.

  17. #17 KAL
    June 14, 2010

    Silti – fortunately the World Health Organization is more knowledgeable than you appear to be. If you check the WHO ICD-10 2006 Alphabetical Index pg. 528 you won’t find CFS under “made up illnesses,”, but you will find it classified under organic brain diseases G93.3 along with myalgic encephalomyelitis and post viral fatigue syndrome. If you are unfamiliar with the WHO or the ICD please feel free to enlighten yourself. If you have objective, scientific proof of your assertions please feel free to have them published in the peer reviewed literature.

    As for anti-virals, I think it is stretching the boundaries to proclaim any doctor who prescribes them a “charlatan.” That is just as ignorant when you are unfamiliar with the particulars. Puhleez figure out what PubMed is and use it – everyone!

    Responsible and well-respected scientists have published peer reviewed research in this area – you don’t have to idly speculate – just read it. Is more research needed? Duh! Do patients and their doctors have the right to determine the course of their own treatment in a responsible manner? You betcha – after all this is the land of the free and home of the brave. (PS it is probably not a good idea for patients to do their own prescribing – leave that to a professional.)

    Regarding XMRV – I personally think Dr. Mikovats is waaaay out ahead of the evidence. I don’t doubt the veracity or severity of CFS, but she is out ahead of the evidence regardless of her apparently good intentions. Good research takes time. And just for the record, XMRV is not showing up in all prostate cancer studies either. XMRV has yet to be proven pathogenic in any disease at this time.

    However, a rocket scientist isn’t needed to know that a few studies one way or the other cannot be considered definitive particularly when there are so many variables at play including the concept of subgroups, genetics, geography etc.

    For example: All but the Dutch study used the 1994 Fukada “cafeteria” definition requiring only four of eight symptoms. You still don’t need a rocket scientist to figure out that two patients can be “labeled” with the same name and not have one symptom in common. As in are you sure everyone has the same disease? Lombardi et al also used the 2003 Canadian definition which accounts for not only chronicity, but severity also which is a necessary component missing from not only the 1994 Fukada definition, but all others thus far. Another point in it’s favor is that the vague term “fatigue” is jettisoned in favor of the requirement that the patient have post-exertional malaise lasting more than 24-hours unrelieved by rest. Tiredness and what medical doctors call exercise intolerance are not the same thing by anyone’s standards.

    If a doctor were to tell you that a differential diagnosis could be made based simply on duration or recurrence alone you would do well to run the other way regardless of what disease you do or do not have.

    As the CDC noted in an ’06 study, the key to viral infection leading to CFS (and possibly perpetuating it in some subgroups)had nothing to do with psychiatry and everything to do with the severity of the infection.

    And ERV is correct here also – objective measurements are needed in all studies of “treatments” for CFS (or any other disease for that matter.)This includes Cognitive Behavioral Therapy and Graded Exercise Therapy in CFS as well as those involving anti-virals and immune modulators. “Gee whiz I feel better (or worse)” is inadequate to say the very least at least in terms of research.

    It is unfortunate that some diseases have been caught up in the ideological war between the psychosocial adherents and attempts to negate the germ theory model. So-called lifestyle factors may well be part of the equation, but all in all, IMHO the role of viruses and environmental factors in disease are underfunded in many areas not just this one.

    Everyone all together now – “More funding please!”

  18. #18 munich
    June 14, 2010

    I take drugs I was 12 years. Now I have 43. I´m bionic, plastic, ultrasonic…but no a person. Now I have EM, SFC and SQM. I¨M a professional patient.
    I will write something in spanish, sorry, is my idiom.(I live in Spain):

    -¿Qué van a hacer los laboratorios y las farmaceúticas si nos curan?.
    -¿Quien va a pagar a los investigadores y les va a regalar los viajes a las Bahamas a los médicos por recetar un determinado fármaco ?
    -¿Con qué se van a financiar los gobiernos si las grandes corporaciones se vienen a pique porque ya estamos sanos y no
    compramos pastillas?
    -¿Qué es lo que nos ha puesto enfermos en realidad?

    La respuesta a casi todas estas preguntas es que nunca lo sabremos. Pero esta Navidad estaba casi segura que iba a morir. Tenía bronquitis recurrentes y pasaba todo el tiempo acostada. Hasta que un médico privado me recetó INMUNOFERON. Yo me receté una dieta purificante,anti-cándida, basada en los grupos sanguíneos y alcalina. después de pasarme seis meses en internet buscando datos. Tomo muchas vitaminas y depuro mi hígado con infusiones y agua. El estado gripal ha desaparecido aunque estoy torpe y me duele algo el cuerpo. Sigo tomando Lyrica, triptófano y somníferos, pero hoy salgo a la calle y puedo ir al cine, jugar con mis sobrinos, ducharme,… La doctora del hospital público me dijo que este fármaco no lo usaba, y en efecto el Estado Español no lo subvenciona y lo tengo que comprar a 18.76 euros una caja de 90 capsulas. Sospechoso.

    No soy médico y no puedo recomendar nada a nadie en el campo de la salud. No creo en nada en particular, me da igual un chamán de la Amazonia que Pasteur. Creo en general en todo lo que funcione. Desconfío del ser humano. Parece que ya estamos haciendo mas mal que bien a nosotros mismos y al planeta. Como colectivo nos hemos pasado la meta desde hace un rato, como individuos sólo somos un número, un contingente para los se lo hemos permitido: Ellos Nuestros Amos. Amen.

  19. #19 ERV
    June 14, 2010

    curious– Um… I write about retroviruses here at endogenous… retro… virus… *blink* If ‘XMRV’ was a worm, I wouldnt really give a shit unless the promoters were full on kooks (like presenting at anti-vax rallies or something, LOL! Wait…)

    Sue– None of those ‘tests’ have shown any connection to CFS or XMRV. Those are not part of any FDA/CDC/any federal governments standard protocol of care for ‘Chronic Fatigue’. What you are doing is uncontrolled, unguided, non-government approved research on yourself. Research that could effect the rest of us, not just you.

    Randomly giving patients shit and randomly measuring biological parameters IS NOT HOW WE DO MEDICAL RESEARCH IN THE 21ST CENTURY. WE USE SCIENCE.

    You dont think your physician is irresponsible for pulling this shit?

    And I study babies that are rotting to death in their own skin from AIDS. Please stick to science in your future comments, as boo-hoo stories literally have no effect on me, and they dont have an effect on science.

    Optimus– Actually, Im granting the premise that XMRV causes CFS. Im saying that even if that is true, the way antiretrovirals are being used right now is FANTASTICALLY stupid and irresponsible.

    KAL– These people arent in university funded/organized/approved clinical trials. Quote sue, this is random people BEGGING their physicians for antiretrovirals. That is not how science works. Thats how we get drug resistant XMRV right out of the starting gate, assuming it is a real, harmful pathogen. You would think that someone like Judy Mikovits would understand basic fucking retroviral population biology, and would speak out, LOUDLY, against this, but apparently she is a moron on many, many, many levels.

  20. #20 Munich
    June 14, 2010

    Se me olvidaba:
    También miro diariamente mi bioritmo para administrar la energía y saber qué actividad debo hacer. Tomo bicarbonato con limón para purgarme y aniquilar a la cándida. Lo hago con una pajita para que el ácido del limón no despierte la furia del mercurio de mis empastes dentales. Apago mi móvil. También miro qué planeta está transitando la casa seis que es la de la salud, observo la fase lunar, y veo los aspectos que hace Marte con otros planetas, y a veces hasta me pongo cabeza abajo para aliviar el dolor de cabeza. También me atrevo algo a leer mis pupilas, las uñas (me dicen si tengo oxígeno o si he pasado por una crisis reumática), y la palma de mi mano.
    Es posible que me extralimite, muy posible, pero creo que es mejor sumar (sin arriesgar demasiado), integrar que restar. Hay suficiente capacidad tecnológica para ello en este momento. Ninguna solución unidireccional nos va a dar la respuesta. Unicamente analizandonos desde muchos ángulos, visiones y credos,no dando nada por sentado,y conociéndonos más íntimamente obtendremos respuestas. Hay un universo en cada indivíduo y a la vez la humanidad es una plaga. Nuestras vidas son un experimento. No es divertido, pero si lo es. Y viceversa.

    Por cierto, en España se está investigando con las Células Madre de Endometrio y también se han descubierto las ¿moléculas? alfa-inmuno defensinas. Me encantaría fabricarme en el microondas un hígado nuevo. Me sentiría como R2-D2.

  21. #21 sue
    June 14, 2010

    well…all i know is i couldnt live with it anymore…and i couldnt kill myself because i have a dependant…so i took the drugs and they are working. take it or leave it. i know that everyone here would do exactly the same thing if they were in my position. its ridiculous to say otherwise.

    if were only a couple of years into the illness, of course i would not be doing this yet.

    sue

  22. #22 ERV
    June 14, 2010

    Randomly giving patients shit and randomly measuring biological parameters IS NOT HOW WE DO MEDICAL RESEARCH IN THE 21ST CENTURY. WE USE SCIENCE.

    You dont think your physician is irresponsible for pulling this shit?

    And I study babies that are rotting to death in their own skin from AIDS. Please stick to science in your future comments, as boo-hoo stories literally have no effect on me, and they dont have an effect on science.

  23. #23 Wendy
    June 14, 2010

    Please everybody, calm down. Cfs is a real illness, it is terrible but let us not go down the road of ‘this illness is worse than that’. ERV, I believe that you believe in what you do and think and work on so hard. But, and I say this carefully, you don’t understand the disease, the research or the hopelessness of this illness and i truly hope you never will confront it personally. People with this illness are very fragile and are very hopeless, yet there is much research that supports the real biological problems. Look at Komaroff, Harvard Med, Brigham and Womans and a host of other reputable researchers. Mikoviks is not new or fly by night, she spent nearly 20 years in the NIC. Maybe XMRV is the cause, maybe not but time will tell. I can tell you that I have the illness, am working full time, mostly due to the anti-virals my doctor put me on as he would not help with disability. He would rather destroy my liver and kidneys I guess. But it has worked and I am working, contributing etc. Please do not even suggest, that this is not a real illness or start comparing it to other illnesses. Who is crowned king in this argument? The person with cancer or the person with ALS? I wish you all well.

    Wendy

  24. #24 Brian
    June 14, 2010

    Yes, ERV! Learn how to use PubMed!!! Do you even know what a pipette is?

  25. #25 Brian (a different Brian)
    June 15, 2010

    Name the five amino acids!

  26. #26 Jessica
    June 15, 2010

    This blog is so bad I can’t believe I read it and am commenting on it. Clearly ERV does not have CFS nor does ERV know someone who does. If ERV is so smart and concerned with the effects of treatments for desperate suffering people from willing believing caring doctors she should stop wasting time writing pretty lame crap and solve this mystery of CFS herself. Now – go to it ERV! Time is wasting! Please ERV atleast donate to research – you seem so passionate about this so do something! ERVie dear something tells me if you lost your life, your loves, your career, your health, your time, and your everything – a retroviral might just be worth you trying (regardless of your standards for ‘good’ science). Thanks ERV in advance for donating to our cause and using those big brains of yours to help find us a cure!

  27. #27 gerwyn
    June 15, 2010

    Erv your lack of any scientific knowledge actually astonishes me.you appear to be a grad student with delusions of grandeur.If you can isolate a “free” gammaretrovirus you would be the first person in history to do so. They only replicate intra cellularly and mainly spread within the host via cell -cell transfer and viral synapses.Their entry into host DNA is facilitated by lipid rafts which largely avoids the hosts intrinsic defences.In addition MLV class viruses show a marked tendency toward neurotropism and bone marrow occupation.measuring whether any drug works for a condition is really a very simple matter.I have tried to find any coherent science amongst your rants but there isn,t any.

  28. #28 ERV
    June 15, 2010

    Brian(s)– LOL! Nostalgia win!

    Wendy– Ive said it before and I will say it again: I dont care about CFS. I am not an MD. I dont care if it is real/fake because I will never be in a position to diagnose anyone. I just like viruses, and dislike people who dont understand/abuse basic biology. The fact this has overlapped with CFS is luck.

  29. #29 Smurfette
    June 15, 2010

    The only infectious disease specialist working in CFS who could be considered “prominent” is Dr. Montoya at Stanford. I’d be a little surprised if he agreed to prescribe AZT. However, he does prescribe anti-virals to CFS patients outside of clinical trials while his paper is yet to be published. If it was Dr. Lerner, after seeing his recently published paper on using anti-virals in CFS patients, I don’t have much confidence in his research ability.

    http://www.dovepress.com/subset-directed-antiviral-treatment-of-142-herpesvirus-patients-with-c-peer-reviewed-article-VAAT

    Hmm… why would a scientist be tending bar at a yacht club? To find rich people?

  30. #30 Andrew
    June 15, 2010

    ERV is right.

    But this is what you get when you have a disease with severe impacts, one which causes the economy over 20 billion dollars per year in lost productivity alone. But yet there is very little money spent on research.
    The answer is you get people desperate to try unproven therapies such as the antiretrovirals mentioned, or other vague treatments such as adult stem cells.

    Of course I’m one of those (50%+) people with CFS who tested negative on the VIPdx test. ;)
    (I live in Australia if anyone is wondering).

    Even if XMRV is associated with CFS, there has to be some other underlying mechanism that enables the infection to contribute CFS in specific cases.
    The recent German XMRV study showing a greater incidence of XMRV in organ transpant recipients is interesting. But of course these people don’t have CFS!

    By the way ERV, your message might be transmitted a little more clearly if you didn’t state it in such emotional language.

  31. #31 Paul
    June 15, 2010

    ERV you are a moron. If you don’t care about CFS then why the hell do you give a toss that people are taking anti retrovirals?

  32. #32 Prometheus
    June 15, 2010

    munich@#18

    “I´m bionic, plastic, ultrasonic.”

    Me too.

    High five!

    *clank*

    Webdy@#23

    “Please do not even suggest, that this is not a real illness or start comparing it to other illnesses. Who is crowned king in this argument? The person with cancer or the person with ALS?”

    You guys started it. You say not to compare then do it in the same paragraph. Martyrdom is not a Macy’s day float.

    Smurfette@#27

    “why would a scientist be tending bar at a yacht club? To find rich people?”

    Dr. Stanley Gall inventor of the gall bladder who, having left animal husbandry (because they caught him at it), decided to specialize in diseases of the rich. {paraphrasing Tom Lehrer}

    Persons with an illness chronic,

    tend to wax quite histrionic,

    “HIV I ‘d gladly bear,

    or lymphoma’s loss of hair,

    locust swarms and genocide,

    or a big Tsunami tide.

    These are complaints of meager fools.

    I didn’t finish graduate school.

    I need a day. I need a stamp.

    Where’s my MacDonald’s cancer camp.

    I’ll eat Ampligen and AZT,

    with bark from an exotic tree,

    My patience is so very thin,

    I’m dropping magnets in my gin.

    Cocktails for my spastic fits,

    Paging Dr. Mikovits!

  33. #33 sharon stapleton
    June 15, 2010

    This person is ONLY a grad student and not a fully trained professional. They have minimal knowledge and lots of plain stupid comments to make. Ignore anything this person says about CFIDS or XMRV. Until this little grad student actually gets CFIDS s/he will NEVER understand the hell we live with day and night without relief.
    This is a child with an overblown ego and not enough knowledge to make comments on anything yet.
    IGNORE IGRNORE IGNORE

  34. #34 Prometheus
    June 15, 2010

    I shall IGRNORE until Erv gets CFIDS.

    Such lovely advice Sharon.

    What, pray tell, is your CV like? Majoring in “Caps Lock” at U of Phx..

  35. #35 Kemanorel
    June 15, 2010

    This person is ONLY a grad student and not a fully trained professional. They have minimal knowledge and lots of plain stupid comments to make. Ignore anything this person says about CFIDS or XMRV. Until this little grad student actually gets CFIDS s/he will NEVER understand the hell we live with day and night without relief.
    This is a child with an overblown ego and not enough knowledge to make comments on anything yet.
    IGNORE IGRNORE IGNORE

    Says the person who can’t understand there has been no link demonstrated between XMRV and CFS, that this is not how things are done in science or medicine, and giving people anti-retrovirals that don’t need them are potentially producing WORSE viruses for absolutely no reason…

    You don’t even have a way to rule any of this out as being any more than a placebo effect, and you come here to libel someone?!

    FUCK OFF!

  36. #36 Stephen Wells
    June 15, 2010

    Why do people confuse “I have a problem” with “This stupid explanation for my problem is correct”?

    Posting about how terrible your CFS is is simply not relevant to whether or not XMRV has anything to do with CFS.

    When I’m ill, I’d rather have good information from somebody who doesn’t give a damn about me personally than bad information from somebody who really, truly, deeply sympathises with my suffering. Maybe that’s just me.

  37. #37 stogoe
    June 15, 2010

    Don’t mind me, I’m just here for the lulz. Mmmm, lulz.
    So sweet
    and so cold.

  38. #38 Prometheus
    June 15, 2010

    Hey, at least there is a consensus.

    “You obviously do not suffer form a debilitating chronic illness that has proven very difficult to treat. If you did….”
    Curious

    “…the illnesse is so horrendous i would not even wish them on you.”
    Sue

    “….i truly hope you never will confront it personally….”
    Wendy

    “Until this little grad student actually gets CFIDS….”
    Sharon

    For the umpteenth time, I think there is a very real organic medical cause or combination of causes for most of the people living in the portmanteau we are calling ME/CFS/CFIDS this week. Perhaps XMRV is present in many of those so described. Perhaps there is a correlation. Perhaps not. Science requires research to replicate the results of those who claim to have found a correlation. Research has yet to reproduce such results.

    Until it does treating people with an illness that has amorphous parameters, no determined cause and no established correlation with massive doses of toxic antiretroviral drugs is like amputating randomly chosen limbs for mysterious persistent flatulence because gangrene smells kind of like poop.

    It is so absurd it demands a reaction. Screaming in outrage or morbid laughter being the options, I choose the latter.

    Making fun of you keeps me from hating you for egregious irresponsibility and anecdotal self serving bullshit that will probably get some people killed.

  39. #39 sue
    June 15, 2010

    what are “massive doses of toxic antiretroviral drugs”? i am taking the amounts prescribed for HIV.

    most people are on combination therapy and, considering XMRV’s replication rate, i don’t think resistant strains emerging should be a huge worry.

    last i heard, they were not able to demonstrate resistance in the lab, even after months of putting XMRV in the presence of Raltegravir.

    sue

  40. #40 munich
    June 15, 2010

    Nice poem

  41. #41 SomeGuyWanderingBy
    June 15, 2010

    I’ve been enjoying this little series – always fun watching terrible research get torn a new asshole – but this whole thing about ARVs means it just isn’t funny anymore.

    sue, if I told you that nipping your toes off with a bolt cutter would cure you, would you do it? Because there’s as much justification for that as for taking AZT. Better long term health consequences too.

    curious, you ask why ERV is spending so much effort kicking Mikovits’s ass. Well that’s the way science works. Idiocy does not get patted on the head and given a cookie.

    By the way, I had CFS for 7 years. I got better. This gives me no special insight into what causes it. Why would it?

    Oh, and Sili? FUUUUUUUUUUUUUCK YOOOOOOOOOOOOOOOOU

  42. #42 D. C. Sessions
    June 15, 2010

    Because people put their trust in doctors and medical scientists. And when charlatans abuse that trust, and push phony treatments, people die. And if that doesn’t piss you off, you’re a heartless dick.

    You forgot Part II: then, when people get screwed over by someone with an MD, they spread the word that real medicine can’t be trusted and more people die. E.G. from measles, HIB, type B hepatitis, pertussis, phenylketoneuria, cancer, etc. etc.

  43. #43 Sleette
    June 15, 2010

    I’m just passing 40 now and have had CFS since I was thirty-one. I’d like to offer a couple of thoughts:

    First, that I’m in full agreement with ERV. Show me the money. Prove that XMRV is involved in CFS in a significant way; prove that using arv’s will actually have an effect on XMRV; prove that patients’ health improves as a result of the treatment and that said benefits outweigh risks/side-effects.

    Second, anecdotal accounts mean nothing; speaking from experience I’ve had times where I feel better and times where I wondered if this day was my last. I could easily have decided to try some ‘treatment’ and subsequently felt better. The fact that this illness is a roller-coaster in terms of symptoms makes anecdotal claims like ‘I feel better’ next to useless.

    Third, any illness, especially those not well understood, or those with no effective conventional treatments, is just a target for the many snake-oil salesmen. Over the years with CFS, I’ve seen it all. It’s all garbage unless proven otherwise. I would encourage you to think of the harm you do by enabling these charlatans to continue to peddle their useless wares, preying on the desperate, but ‘just trying’ something.

    Lastly, realize that ERV was just posting in regards to a lack of scientific evidence and subsequent improper treatment. This is a good thing. He/she’s not belittling you or your illness. If there’s any hope of an effective treatment for CFS/ME, it’ll start and end with the truth.

  44. #44 Rrr
    June 15, 2010

    … they spread the word that real medicine can’t be trusted and more people die. E.G. from measles, HIB, type B hepatitis, pertussis, phenylketoneuria, cancer, etc. etc.

    And appendicitis. Dont forget appendicitis! Appendicitis and tetanus. Appendicitis and tetanus, and sepsis. And die-a-beat-us, too. And appendicitis. And I guess you meant HIV, or just hives? No joke. All tickles.

  45. #45 D. C. Sessions
    June 15, 2010

    So — and I don’t want to misrepresent the arguments here in favor of using antiretrovirals — I read that position as:

    “CFS is utterly horrible and it’s better to take anything, no matter how bad the side effects and other costs, no matter how little reason there is to believe that they’ll do any good, because it’s better than doing nothing. I feel better when I have done something that promises to make me feel better.”

    Is that the essence of those arguments?

  46. #46 D. C. Sessions
    June 15, 2010

    And I guess you meant HIV, or just hives?

    No, I mean invasive Haemophilus Influenzae type B disease, resulting in meningitis, deafness, cognitive impairment, blindness, paralysis, and death. It used to be quite common, before some very good researchers developed a vaccine twenty-plus years ago and it pretty much vanished in the USA.

    Now it’s coming back. Ain’t that simply grand?

  47. #47 Rrr
    June 15, 2010

    No, I mean invasive Haemophilus Influenzae type B disease, resulting in meningitis, deafness, cognitive impairment, blindness, paralysis, and death.

    Ah. Must have been blind, or something, I guess. One learns something everyday one aint dead yet, hopefully. Thanks for the enlightenment.

  48. #48 Prometheus
    June 15, 2010

    “Now it’s coming back. Ain’t that simply grand?”

    crap.

    I forgot the U.S. is having HIB polka dot problems in herd immunity.

    Minnesota no less.

    When I get to my reserved cubicle in Hell I am using all my sick days on the eighth circle giving Andrew Wakefield atomic wedgies.

  49. #49 Jason
    June 15, 2010

    Sharon wrote:

    This person is ONLY a grad student and not a fully trained professional.

    You are misinformed if you do not believe it is the graduate students in these labs who do the actual cutting-edge work, under the supervision of a principal investigator (in some cases, in others, the grad students receive only financial support and no actual guidance). It becomes the responsibility of the graduate student to make advances in the field.

    They have minimal knowledge and lots of plain stupid comments to make.

    What did adverbs ever do to you? Perhaps you have minimal knowledge of grammar? Also, is Abbie more than one person? Perhaps she has multiple personalities? (They? Really??) Let’s cut the crap – Abbie knows her shit when it comes to retroviruses. So if you’re going to criticize, you need to put up or shut up. A plainly stupid criticism from a plainly stupid troll.

    Ignore anything this person says about CFIDS or XMRV. Until this little grad student actually gets CFIDS s/he will NEVER understand the hell we live with day and night without relief.

    I didn’t realize Judy Mikovitz was a CFIDS sufferer? Is that why she has received such a following? And why is “little” used as a pejorative, here? What bearing does her size, stature or status have on her arguments? I didn’t think so. Nice ad hominem though.

    This is a child with an overblown ego and not enough knowledge to make comments on anything yet.
    IGNORE IGRNORE IGNORE

    You’re not a scientist. You don’t like what Abbie has to say and I don’t like what one of my last reviewers had to say. But if they’re right and the concerns they raise are scientifically valid, then you address the science. You don’t make character attacks, and false appeals to authority, to make your argument.

    Science or GTFO.

  50. #50 Ernie
    June 15, 2010

    Its horrifying.

    This is all fucking horrifying.

    So is having CFS

  51. #51 Smurfette
    June 15, 2010

    Yes, ERV is only a grad student. And 99% of CFS patients are only people who don’t have even a bachelors degree in biology or any research experience.

  52. #52 Kemanorel
    June 15, 2010

    Its horrifying.

    This is all fucking horrifying.

    So is having CFS

    Yeah… we understand that. WTF don’t you understand about the course of action being taken is risky, it is not backed by science, it goes against the guidelines for clinical trials, it promises no improvement, and it’s likely to cause XMRV to become resistant to the ARVs FOR NO REASON AT ALL?

  53. #53 sue
    June 15, 2010

    erv seems to have an agenda when it comes to XMRV. perhaps she didn’t get to be in on a project..perhaps a competing lab got a grant while hers didn’t…i dont know but something is going on.

  54. #54 Smurfette
    June 16, 2010

    Interesting that when Dr. Klimas advises patients not to try antiretrovirals, that’s not an “agenda”, and when Dr. Coffin says it needs to be done in controlled trials along with a good way of measuring the virological effect of the drug, and that others don’t think that this is the time to do it, that’s not an “agenda”. (Wait, isn’t that what ERV said?)

    Wow, this is happening without even being positive for XMRV even by WPI tests?
    http://www.forums.aboutmecfs.org/showthread.php?3939-My-AZT-RAL-Trial&p=72235&viewfull=1#post72235

    Paragraph #2 sounds delusional coming from a doctor and Harvard graduate:
    http://www.forums.aboutmecfs.org/showthread.php?3939-My-AZT-RAL-Trial&p=73221&viewfull=1#post73221

  55. #55 R2
    June 16, 2010

    @Sue:

    Scientists criticize methodology in research all the time without having an agenda. It’s just what we do in science, you know. People disagree, evidence is gathered, we get closer to the truth by proving or disproving stuff, etc…

    I’m sorry you have CFS, it’s good you are feeling better, but since you’re a ‘case study’ (using the term very loosely), there is no way to know if the treatment you are taking is due to placebo or the medication. Unless proper studies are done.

    And, as has been mentioned many many times before… if you REALLY care about your illness, you’ll want the right answer to be found. XMRV and CFS link not reproduced by other labs? Maybe there was a mistake or a statistical fluke or something. If there is no proof for the link, maybe it will be better for all that scientists look in another direction where it is more likely they’ll find the actual cause and then a way to fix it? This reminds me of the vaccine-autism link people… if there is no proof, they should be asking for money to be spent on looking for other causes/treatment/whatever, not spend more money on what is quite likely to be a dead end.

    R2

  56. #56 rnb
    June 16, 2010

    Anyone ever hear of something called MRSA (multiply resistant staph aureus)? Developed because of indiscriminate use of antibiotics for things like viral infections.

  57. #57 fnxtr
    June 16, 2010

    rnb 51: Yes, my swmbo is a carrier. She can’t be her offices first aid attendant since she found out. Because some BOZOS either didn’t finish their entire course of drugs or because some doctor wimped out and gave out antibiotics for a cold.

  58. #58 Stephen Wells
    June 16, 2010

    @Sleette: Sympathy for your illness, and tremendous kudos for your clear-headed thinking.

    @sue: if you read the blog, you’ll find erv’s agenda is obtaining truth rather than falsehood in her area of interest, retroviruses. It’s tragic you think it has to be about money or resentment.

  59. #59 D
    June 16, 2010

    XMRV was a bit of topic at the Retrovirus meeting at Cold Spring Harbor Labs last month.
    http://meetings.cshl.edu/meetings/abstracts/2010retro_absstat.html
    The main consensus remains very doubtful that XMRV is causal to the diseases it has been linked with. But it does seem like there are some tested far in the pipeline that are going to be used to better determine its presence in patients.

  60. #60 Kemanorel
    June 16, 2010

    erv seems to have an agenda when it comes to XMRV. perhaps she didn’t get to be in on a project..perhaps a competing lab got a grant while hers didn’t…i dont know but something is going on.

    Yeah… it’s called bad standards and practices. You could be completely and 100% cured and it would mean NOTHING. Drug studies have standards. Without a double blind study, you can’t rule out a placebo effect, and it pisses me off that you could potentially be a catalyst for breeding yet another “super” bug like MRSA…

    Anyone ever hear of something called MRSA (multiply resistant staph aureus)? Developed because of indiscriminate use of antibiotics for things like viral infections.

    My brother got it a while back. That is a nasty little bug in both what it does and how hard it is to get rid of it. He ended up with a few absesses where the sores burst… Disgusting.

    You usually can’t trust TV shows, but I remembered this one because its dead on:

    This is our fault. Doctors over-prescribing antibiotics. Got a cold? Take some penicillin. Sniffles? No problem. Have some azithromycin. Is that not working anymore? Well, got your Levaquin. Antibacterial soaps in every bathroom. We’ll be adding Vancomycin to the water supply soon. We bred these super bugs. They’re our babies. Now they’re all grown up and they’ve got body piercings and a lot of anger.

    Let’s just hope Sue and others of her ilk aren’t cultivating another super bug.

  61. #61 jaranath
    June 16, 2010

    Stephen Wells @ 55:

    Yup, it’s tragic. And it’s also because she thinks it’s all about her. Another commenter was
    right to call this out as self-centeredness. Sue is so autofocused that anything not lining up with what she wants or needs to beleve isn’t just wrong, it’s somehow malicious. Hence, ERV is a pharma shill, or a jilted grant applicant, or some other “thing is going on”. Not that I should expect much from one who falls back upon that bastion of the advocate without evidence, “all I know is…” I think that simply getting the majority of the public to understand why that mindset is unacceptable would make a huge difference in science, politics, religion…

    But I must also be fair to Sue. I know very little about the experience of CFS itself, but if it can be as bad as Sue suggests, then she has great cause to be self-centered. Doesn’t make it right, but would at least make me sympathetic.

  62. #62 dt
    June 16, 2010

    Sue’s posts all seem to have disappeared from the forum. Is something going on?
    http://www.forums.aboutmecfs.org/showthread.php?3939-My-AZT-RAL-Trial

  63. #63 jaranath
    June 16, 2010
  64. #64 Prometheus
    June 16, 2010

    “Let’s just hope Sue and others of her ilk aren’t cultivating another super bug.”

    Sue is still there.

    On valcyte AND valtrex for three years.

    Bumped AZT up to 300 mgs twice daily around May.

    Bugging her doctor to add Tenofovir.

    Hopes not to be on AZT for more than a couple of years.

    “a couple of years”

    Wow. Forget super bug….

    what was the name of the monster made out of pollution that Godzilla fought?

  65. #65 Justin Reilly, esq.
    June 16, 2010

    The troll ERV strikes again. I stopped reading at “Chronic Fatigue”- ERV you know very well it’s ME and that calling it ‘cf’ is like calling Leukemia or MS “chronic fatigue”. Just try to be fair and scientific and maybe people will listen to you.

  66. #66 fnxtr
    June 16, 2010

    Toxic Avenger III, anyone?

  67. #67 Dave
    June 16, 2010

    “On valcyte AND valtrex for three years.”

    “Bumped AZT up to 300 mgs twice daily around May.”

    Wow! Is she sure (OK, she’s sure but is anyone else) that her fatigue is due to CFS and not, say anemia, a known side-effect of both Valcyte and AZT?

  68. #68 Smurfette
    June 16, 2010

    You have your own dedicated thread now:
    http://www.forums.aboutmecfs.org/showthread.php?5644-Anti-XMRV-Blog-New-post

    @58 jaranath – Yes, CFS can be as bad as whatever Sue might have described and worse. The patients who can already post on the Web are better than the ones who can’t. However, one can act desperately yet at the same time acknowledge that the scientific basis for acting so is not justified yet. One can acknowledge that one’s decision is out of desperation. If you go to a casino to gamble, you don’t have to make up and support some quack statistical theory that the casino is actually rigged in your favor when real math proves it’s not. You are just trying your luck anyway.

    From experience, the illness can include somewhat of delusions and delusions of grandeur. Yep, believing all the conspiracy theories and that I, the patient, know more science than PhDs and we’re going to win the Nobel Prize.

    Some of the drugs patients try can also have psychosis as a side-effect:
    http://www.drugs.com/mmx/valganciclovir.html (Valcyte)

    Side/Adverse Effects

    psychosis (confusion; delusions; hallucinations; illogical thinking)

  69. #69 Smut Clyde
    June 16, 2010

    ERV, in a post last November you grumbled that “I hate how the ‘new’ Technorati doesnt let you see everyone whos linked to you.” So this is just to let you know that I’ve linked to you extensively here.

  70. #70 EoRaptor
    June 16, 2010

    KAL said: [snip pointless hand-waving/]If you have objective, scientific proof of your assertions please feel free to have them published in the peer reviewed literature.

    I’ve never been able to resist the really low hanging fruit. Here are just the first ten, out of 5,192, citations from PubMed about antiretroviral resistance. Take your own advice, why don’t you?

  71. #71 EoRaptor
    June 16, 2010

    @23 ERV, I believe that you believe in what you do and think and work on so hard. But, and I say this carefully, you don’t understand the disease, the research or the hopelessness of this illness and i truly hope you never will confront it personally. People with this illness are very fragile and are very hopeless, yet there is much research that supports the real biological problems.

    Um… I’m sorry, but would you please point to where ERV said CFS isn’t a real biological problem? I’m just a simple, country, programmer but it looks to me like ERV is concerned about the faith-based treatment going on, not the existence of the problem.

    But I could be wrong.

    Furthermore, to suggest that ERV doesn’t understand research addressing retroviral sources, causes, effects, and treatments is insulting beyond belief. If you are a man (not belittling — I truly don’t know), my father would have asked you to step out to the woodshed to discuss the matter. (I’ve been citified too long.) At the very least, an apology is in order.

  72. #72 qetzal
    June 16, 2010

    Prometheus,

    That would be The Smog Monster, and thank you very much for reminding me of that awesomely bad movie! +5 Internets to you! :-D

  73. #73 spurge
    June 17, 2010

    The smog monster was also called Hedorah.

  74. #74 qetzal
    June 17, 2010

    @spurge,

    Yes, but I saw the original American theatrical release titled “Gozilla Versus the Smog Monster.” According to Wikipedia, that must have been in 1972, so I was about 12. I particularly remember the cheesy way Godzilla “flew” (backwards, no less) using his atomic breath as propulsion, and the fact that he seemed to kill the Smog Monster at least 4 or 5 different times before it finally died. (Or did it?!)

    Good stuff!

  75. #75 spurge
    June 17, 2010

    I forgot about the flying backwards. Good stuff indeed.

    All the psychedelic cartoons are what stick in my memory.

    I remember as a kid on Thanksgiving weekend there was a monster movie marathon. Good times.

  76. #76 Vicki
    June 17, 2010

    Yes, CFS is bad. No argument there. I know people with CFS and fibromyalgia. A cure, or even a really good treatment (in the way that statins treat blood pressure problems, but only as long as the person keeps taking them) would be wonderful.

    That doesn’t make it a good idea to throw unproven drugs, with serious side effects, at their already weakened bodies.

    We aren’t talking about homeopathy, which is a waste of your money but (if the potions really are homeopathic) otherwise harmless. We’re talking about adding liver and kidney damage to the existing symptoms.

  77. #77 sue
    June 17, 2010

    not sure you guys get it: this is my ONLY option. after 18 yrs, i COULD NOT take it anymore. there was NO respite aside from a few hours of sleep. painkillers did NOT help.

    i cannot afford stem cell therapy or ampligen and i certainly cannot travel anymore in this condition.

    i would very happily commit suicide but i have a dependant.

    i don’t see anyone here giving me any other options.

    sue

  78. #78 dt
    June 17, 2010

    Things are getting nasty on PR, with veiled future threats:

    At any rate, I advise folks to copy ERV’s blog entries to their hard drives as soon as she posts them. When she finishes her PhD and looks for work, she’ll probably delete her blog archives lest they fall into the hands of potential employers. No reputable university or research institute would hire someone who’s taken such an unprofessional tone.
    Another constructive thing we can do is build an air-tight case proving her identity. I mean, do we know for sure that her real name’s Abbie Smith?

    http://www.forums.aboutmecfs.org/showthread.php?5644-Anti-XMRV-Blog-New-post&p=93213&viewfull=1#post93213

  79. #79 Smurfette
    June 17, 2010

    You have your own dedicated thread now:
    http://www.forums.aboutmecfs.org/showthread.php?5644-Anti-XMRV-Blog-New-post

    @58 jaranath – Yes, CFS can be as bad as whatever Sue might have described and worse. The patients who can already post on the Web are better than the ones who can’t. However, one can act desperately yet at the same time acknowledge that the scientific basis for acting so is not justified yet. One can acknowledge that one’s decision is out of desperation. If you go to a casino to gamble, you don’t have to make up and support some quack statistical theory that the casino is actually rigged in your favor when real math proves it’s not. You are just trying your luck anyway.

    From experience, the illness can include somewhat of delusions and delusions of grandeur. Yep, believing all the conspiracy theories and that I, the patient, know more science than PhDs and we’re going to win the Nobel Prize.

    Some of the drugs patients try can also have psychosis as a side-effect:
    http://www.drugs.com/mmx/valganciclovir.html (Valcyte)

    Side/Adverse Effects

    psychosis (confusion; delusions; hallucinations; illogical thinking)

  80. #80 Kemanorel
    June 17, 2010

    not sure you guys get it: this is my ONLY option. after 18 yrs, i COULD NOT take it anymore. there was NO respite aside from a few hours of sleep. painkillers did NOT help.

    Not sure you get it:

    1.) A sugar pill might be just as good because you have no criteria to distinguish it from a placebo. You need a target first, then you develop the drug, then you need double blind tests.

    2.) There has been no demonstrated link between XMRV and CFS, ergo you have no target.

    3.) You are a potential breeding ground to make drug-resistant strains of XMRV and other viruses you might have… for absolutely no reason.

    We’re not talking about your condition. No one here is saying that it doesn’t suck. What you don’t get is that our issue is WITH THE PROCESS BEING TAKEN.

    This is bad for several reason. Even if the drug IS helping you, because you’re not in a standard study even if you were cured 100%, your case can’t be used to help others.

    Even without an actual target I’d be okay with you taking whatever drugs you wanted so long as you were part of a double blind to rule out a placebo effect so your results could at least be used for future sufferers.

  81. #81 Ernie
    June 18, 2010

    Preach it to the choir on what we should or shouldn’t do, Oh they can’t hear you they’re dead. I bet they would have tried some HIV meds.

    The original list was compiled by National CFIDS Foundation and we have continued compiling it from messages sent to us.

    We remember the following in loving memory:

    T. Faye Abramson died in October of 2004 at the age of 46 following complications from surgery. Faye was trained as a tax attorney and worked until ME/CFIDS no longer allowed full time work. She established and ran the Burlington County CFIDS Support Group in New Jersey and offered help and encouragement to many patients. Faye was well organized and, although bedridden, was always ready to answer patient’s questions and give them physician referrals. She was “incredibly determined” according to one patient who felt Faye was a lifesaver. She supplied an information table at her support group meetings with many articles. Faye was a long-term patient who left a husband, Howard, and two daughters, 10 and 4.

    Pamela Schlangen Acher died in her sleep in the early hours of October 27, 2003. From Baltimore, Maryland, Pam, who had just turned 59, was a very long term patient who had been wasting for a while and found herself unable to digest. She had been having heart problems during the weeks prior to her death and had been tested for arrhythmias just the week before. Pam was a courageous patient who found the medical profession a challenge to convince of the severity of her illness including federal (NIH) physicians. Always one to try and reach out to others to help, Pam was a valued member of The National CFIDS Foundation since its inception and a founder of the CFIDS Network of Baltimore that had been active politically. She left her parents and a sister as well as countless friends.

    Ruth Allen, from Lexington, MA, died on January 21, 1999 of complications related to CFIDS/ME. Ruth was a warm and intelligent person who had been sick since the early 1980′s with CFIDS/ME and spent most of her years, when she reached her 80s, suffering from one complication following another and was in the hospital for testing a great deal of time. She became so severe that she finally had to be placed in a nursing home where, in the fall, she gave up all of her medications knowing she no longer had any quality of life. She died months later of an influenza type pneumonia that her body could no longer fight. Ruth left three children, Peggy, Sue and John as well as her husband.

    Rhonda Amen: Female. Age and cause of death unknown. Long term patient.

    Kathryn Blaine Anderson, died on September 10, 2004 at age 40 after just six years of suffering greatly from ME/CFIDS, a disease that, in many physician’s minds, doesn’t exist. Kathryn’s worst symptom of the illness was multiple chemical sensitivity which made the disease so much more challenging. In the end, just swallowing became impossible. Like most patients, Kathryn found that she was much more knowledgeable about her illness than most physicians and, of course, many who had no answers told her that her suffering was all in her head. She found one that understood her suffering, Jay A. Goldstein, M.D., who was her physician until he was forced to retire. Kathryn, a resident of Los Angeles, CA, was a student and a computer design specialist who worked for the LA Weekly. Identified as a gifted child, her quest for knowledge remained unquenchable. Kathryn leaves her parents, John and Ellen and a sister and brother-in-law who reside in England with their two young sons. A member of The National CFIDS Foundation, she will be remembered by many in the ME/CFIDS community.

    Marie Anderson: Taken from BRAME (Blue Ribbon Awareness for Myalgic Encephalomyelitis).

    Paul Anderson, 42, died from an overdose of drugs in July of 2003 in Galphay, England. Paul was stricken with M.E. just days before his marriage in 1995, which put an end to his London-based business. He was a brilliant translator who spoke ten languages. His wife was his main caregiver while he suffered from constant and increasing pain. A suicide note read, “I’m sorry. I love you. I can’t take any more pain.” His wife was later charged with not trying to save his life by calling for medical help earlier while the misinformed and biased press often referred to his illness as “hypochondria.” She was acquitted.

    Anonymous: 48 year-old female. Date of death unknown. Had CFIDS/ME for years, diagnosed less than a year before death. Cause of death: aortic aneurysm. (Source: CFIDS/ME support group leader.)

    Anonymous: 42 year-old female. Date of death unknown. Had CFIDS/ME for 7 years. Cause of death: ulceric gastritis, died in hospital. Occupation: Ph.D. in computer programming and systems analysis. (Source: Letter from CFIDS/ME support group leader.)

    Anonymous: 32 year-old female. Date of death unknown. Cause of death: suicide due to unbearable pain. Occupation, mother of three small children. (Source: Letter from CFIDS/ME support group leader.)

    Anonymous: 19 year-old female. Died 1986. Cause of death: severe, progressive ME. (Source: letter from family member.)

    Anonymous: 45 year-old male. Died April 1997 from complications of CFIDS/ME. Occupation: photographer with many interests. (Source: Support group leader and friend of deceased.)

    Anonymous: Female, age, date of death unknown. Cause of death: “had a sensory pain of burning, almost scalding…lost bowel and bladder function…overdosed trying to relieve pain…” (Source: Paul Cheney, M.D., Ph.D. during questions following a lecture, 1996.)

    Anonymous: Age, sex, date of death unknown. Cause of death: “…so severe that she was in a nursing home at age 29 and died from an intercurrent infection.” (Source: Paul Cheney, M.D., Ph.D. during questions following a lecture, 1996.)

    Anonymous: Sex, date of death unknown. Cause of death: “infections with poor nutrition and poor self care…was hospitalized, (and died)…suspect cardiac arrythmyias…” (Source: Paul Cheney, M.D., Ph.D.: questions following lecture, 1996.)

    Anonymous: Female in 40s. Cause: Suicide. (Source: phone call from her friend.)

    Anonymous: Age unknown. Died October 28, 1999 from complications of CFIDS. This male patient contracted CFIDS from his daughter 3-4 years prior to his death. Both had high EBV titres. Death was attributed to malignant lymphoma caused by a herpes virus. (Source: daughter of deceased.)

    Anonymous: female, aged 44, of Florida who died from complications following chiari malformation surgery. She had sufffered from CFIDS/ME as well as fibromyalgia for many years. An outgoing, funny and spunky individual, she left two daughters and is sadly missed. (Source: Friend)

    Edyth Antelline, 79, died on March 7, 2004 after a series of strokes that had rendered her paralyzed for nearly a year as well as a cancerous tumor in her stomach. “Edyth was a wonderful person” with a rare sense of humor and a real fighter for the cause of CFIDS/ME while struggling with the disease for 19 years. A published poet, Edyth was very creative, a lover of the color pink, and got her strength from the ocean. No matter how much pain she endured, she always made you laugh, recalls a friend. Another recalled, “Edyth taught me how to deal with CFIDS gracefully. We need more people in the like her in the world.” She had 3 children, 6 grandchildren, and many great grandchildren that will miss her along with so many people in the San Diego area. (Source: PWME/C friend)

    Rebecca Badger: Female, age, cause of death unknown.

    Charlene S. Arkway, 76, died January 15, 2006 in Rhode Island. She was a support group leader for CFIDS/ME in the early 1990′s in Newton, MA. Born in Illinois, Charlene was former social worker. She left a daughter and son, both of Massachusetts along with a grandson, two brothers and a sister.

    Marilyn K. Asbury, 44, (January 27, 1952-December 26, 1996) Charlotte, NC. Marilyn became ill in 1983 and was diagnosed with CFS in 1986 by Paul Cheney,MD. She was a co-founder of CFIDS Association of Charlotte, which later became CFIDS Association of America. Marilyn served as both Secretary and Co-Editor of the first editions 1986-1992 of The CFIDS CHRONICLE. She served as an Executive Board Member from 1986-1992. As editor of the Chronicle, she edited, wrote articles, and personally folded and addressed each copy (by hand). With the support of a small volunteer committee of four or five members these were hand stamped, sorted by zip-code and then rushed to the downtown post office to be delivered to approximately 25,000 readers all over the United States. This duty alone consumed a minimum of two weeks work each month. Marilyn was committed to providing and educating CFS patients with as much information as possible. She believed knowledge dispelled fear and would further our own (patients) need for research. Marilyn took part in Paul Cheney’s first Ampligen trial. Shortly afterwards, she developed breast cancer, which she courageously battled to the end. Marilyn was survived by her husband Louis Asbury III, and son, Louis Asbury IV. She also left behind many, many friends and fellow patients who loved her dearly. Marilyn lit the torch of knowledge, when CFS patients struggled and suffered in the dark. She led us into the light. (Source: family and friends)

    Tracey Lee Ash, 26, died on March 7, 2002 in Australia from CFIDS/ME related causes. Tracey battled with CFIDS/ME/FMS and multiple chemical sensitivities for many years. Tracey constantly searched for new possibilities of getting well, but in the end wellness became a faded and unreachable distant light. She left her parents, Glenn and Sandra Ash. (Source: family)

    Sherryl Atkinson died at the age of 50 in September of 2001 after many years of suffering from CFIDS/ME. Sherryl was a well known activist for the disease and died of viral pneumonia, a complication of CFIDS/ME. (Source: Anne-Marie Vidal)

    Barbara Baffa, 61, died on August 3, 2003 from CFIDS/ME related causes. An unidentified infection in her lungs hospitalized her in early July and spread to eventually shut down her major organs. Barbara, from Durham, Connecticut, was a cultural anthropologist who had CFIDS/ME for 25 years. She tried to find any options for her illness, researching the subject in depth. Said a phone friend, “Her penetrating insight and level of awareness always opened up new insights for me…” Barbara left her husband, Ronald Capozzi who has shared her medical diary with the National CFIDS Foundation and a brother, Chet. Barbara was born in Plandome Manor, NY. She was a graduate of Swarthmore and Yale Universities. She had taught Cultural Anthropology at Southern Connecticut University and had served as medical social worker, counseling terminally ill patents, at the Meriden-Wallingford Hospital.

    Gloria Baker: 53 year-old female. Died Dec. 1994. Had CFIDS/ME for 10 years. Gloria had been one of the earliest Ampligen trial patients. She had, at the time of her death, lost control of all bodily functions. Cause of death: gunshot wound. Suicide has been questioned by friends.

    Jean Bannks passed away in 2006 from ovarian cancer after many years of suffering with CFIDS/ME. For many years, Jean had a support group in Rockford, IL. When she was no longer physically able to run her support group, she continued to take calls from patients. (Source: CFS,FM, & Chemical Sensitivity Coalition of Chicago)

    Carli Barry, 27, took her own life on her 27th birthday on February 27th of 2001, after she found that friends let her down, the benefits agency made life hard, and the hurdles of having a disease so misunderstood left her depressed in addition to her devastating symptoms. Although her body was found just 300 metres from her flat in England, the police did not locate her for 9 days although their cars were barely 12 metres from her body. A full year later, her parents are still waiting for the inquest results. (Source: Sheila Barry)

    Penny Barshied: died 1985. Cause of death attributed to a brain tumor. Although Penny was never diagnosed with CFIDS/ME, she became sick at the same time as her husband and was successfully treated with a herpes drug at the NIH that allowed her to live years longer. Her husband, a PWME/C was an advocate in the very early days of “CFIDS.” Penny was a schoolteacher and the two teachers who taught with her in the same classroom also developed brain tumors at the same time. From the newest information we have learned about this illness, we feel comfortable adding Penny’s name to our Memorial List. (Source: husband, Robert)

    Lisa Beach lost her battle with ME between January 10 and 14 of 2001. Lisa lived in Homestead, Florida and was had fibromyalgia along with many other health problems including asthma and diabetes.. When one support group leader tried to contact her and received no answer from this homebound patient, she went to her home, only to contact police who found her in her bed where death had taken her. No autopsy was performed.

    Fern Belvin, 58, died on September 4, 2002 in Virginia Beach. Fern had suffered from CFIDS/ME for 18 years. She is survived by her daughter, Adrienne, her husband, David Warren, one brother, as well as a grandson whom she adored. Before becoming sick, Fern was a registered nurse for 27 years. Helping her fellow suffers even after her death, memorial donations went to The National CFIDS Foundation earmarked for research.

    Patricia Bennett, 52, died in February of 1999. Patricia had CFIDS/ME for more than ten years and died from cancer. She lived in Fountain Valley, California and is survived by her husband, Gary and three grown children. (Source: Friend J.Rohde)

    Danila Bertonati, 32, died on May 18th, 1976, in Genoa, Italy following a two year courageous struggle with Burkett’s Lymphoma. Danila had a bone marrow transplant and other treatments. She left her loving parents and many friends who remember her brave struggle to live. (Source: family member)

    Anitta Bliss, not yet 40, January 18, 2000 “after a long and painful struggle against CFIDS/ME.” Anitta was a resident of San Jose, California and a member of The National CFIDS Foundation, Inc.. She leaves her parents and a sister, Jean, and a fiancée, Justin Milliun. (Source: family friend)

    Sandy Blythe was a paralympic champion for years who represented Australia from 1988 to 2000 and won a gold medal in Atlanta in 1998 where he was a co-captain of his wheelchair basketball team. Sandy’s retirement was forced upon him after the Sydney Games when he was diagnosed with chronic fatigue syndrome. He took his own life in late November of 2005 asking that donations be made to an Australian CFS group. He leaves a partner, Paula Coghlan, and his family.

    Elise Bomford died in mid January from CFIDS/ME related lymphoma. Elsie belonged to the ME Victoria Association in Canada. She affected many with “her quiet strength and generous warmth.” She was 74. (Source: Margaret Sherwood)

    Margie Boon: 52 year-old female. Died Mar. 27, 1996. Long-term patient. Cause of death: Sub-dermal hematoma. Founder of Sierra Vista CFIDS Support Group. (Source: letter from friend.)

    Eric W. Booth, M.D. 48 year-old male. Died June 18, 1995. Had CFIDS/ME for 16 years. Cause of death: cardiac dysrhythmia, cryptogenic myocardial fibrosis. Occupation: Radiologist. Despite illness, campaigned for research and better treatments. Wrote in 1991, “I have been very seriously ill for the last five years…Despite my feeling this way, I am unable to convey this to my medical colleagues…I have come to believe that physicians suffer from “compassion fatigue.” (Source: BMJ, Vol. 311, 28 Oct 1995 and Death Certificate.)

    Lujuan Boreermeyer, 50, died of complications of CFIDS/ME (cancer) on December 25, 2003 in Texas. She left a daughter, Tina, mother, sister and brother along with a partner in life, Sue Turicchi. Lujuan left a lasting impression on all that she met and is missed by many.

    Donna Brewer: Female: Age and date of death unknown. Cause of death: heart failure. Western North Carolina CFIDS Support and Advocacy Group Leader. (Source: letter from support group.)

    Marion A. Boutcher died on April 23, 2006 at the age of 73, after a long and difficult battle with CFIDS/ME. Marion was in the first trial of Ampligen from 1988 to 1993. Shortly after she went off Ampligen, she was diagnosed with a rare form of breast cancer. Hemispherx BioPharma consistently ignored her calls even though she lived near their home office in Philadelphia. Her original tumor was never identified although it was an estrogen receptor type. It slowly metastasized throughout her body. She broke a hip in February which furthered her decline until she died in at Abington Memorial Hospital. Marion kept in touch with many of those she met while on the Ampligen trial and was a brave and compassionate person. She left a devoted husband, B. Frank as well as a son, Harry R. and a daughter, Debbie who join many who will miss her enriching their lives. (Source: friend and fellow Ampligen patient)

    JoAnn Boyle, 53, died on October 3, 2005. She had a long-standing CFS diagnosis with complications of ovarian cancer, polymyositis, legionaire’s disease and, finally, brain cancer. JoAnn volunteered for the Wisconsin CFS Association as a group leader, then a contact person and then as a moderator for their Chat room. Many will remember JoAnn’s help and her willingness to share her knowledge with others.

    Jason L. Brekenridge, 23, died on December 16, 2005 in Baldwinsville, NY. An autopsy found he died of a seizure. Jason was disabled with CFIDS/ME shortly after receiving two associate degrees in technology and business management from Bryant & Stratton College. He had to move in with his parents and spent a great deal of time researching the disease and posting his hypotheses online along with trying experimental therapies in his determination to improve. He was looking forward to participating in a research endeavor and his physician has named this New York RNA study after him in his honor. A member of the National CFIDS Foundation, Jason leaves his parents and grandparents and his friend since childhood, David Lum. (Source: friends and Syracuse Post Standard)

    Donna Brewer died after suffering many years with CFIDS/ME. Although her date if death was not reported to us, Donna died from heart failure. She was a support group leader in North Carolina. (Source: Anne-Marie Vidal)

    Kathleen Briglio: Female: age unknown. Died July 1996. Cause of death: Brain tumor. Active member and former president of the ME Victoria Association.

    Chris Brown got CFIDS/ME when she was 31 and died after many years of the illness in December of 1999. She was taken to the hospital and, it was reported, “simply stopped breathing.” Her physician believes it was her heart. After many years of battling pain, Chris leaves her daughter, Michelle, also an CFIDS/ME patient, and her husband. Chris lived in New Zealand. (Source: Australia’s Country Network.)

    Judy Brown: Female, age unknown. Died 24 Aug. 1996. Long term CFIDS/ME patient. Cause of death: self induced drug overdose. (Source: The Fitness Report, September, 1996.)

    Martin John Buckley died October 11, 2002 at age 71. A former schoolteacher, Martin, upon retirement, published several military history books. He belonged to the Northern Rivers CFIDS/ME/FM Support Organization in New South Wales, Australia and tried to help others as much as possible despite living with ME. Martin’s muscle weakness grew so profound that, toward the end, he could not keep his eyes open and had trouble eating and speaking. He had trouble holding his head up until the weakness affected the heart and he stopped breathing. He leaves his wife, Joan, and his family. (Source: Merle Fullerton, NR CFIDS/ME/FM)

    Chris Butler died in 1999 after struggling with CFIDS/ME for years and the death was reported in the Country Network newsletter of Australia.

    Joanna Butler died in England in 1988 at age 24 of CFIDS/ME. The last two years of her life were spent bed-bound and required tube-feeding by her devoted parents. Joanna was from Leaminton Spa in Warwickshire. A police investigation followed that cleared her parents of any wrongdoing but they were finally forced to move after being continually hounded. Newspapers in the UK carried the story of Joanna’s tragic life. (Source: ME Action, U.K., Eileen Marshall and Margaret Williams)

    Brenda Calabrese, a long-term CFIDS/ME patient died of breast cancer late in 1999. Brenda was a resident of Massachusetts who found her physical deterioration forced her to move in with her mother for help. Brenda will be missed by her family and fellow patients. (Source: PWCFIDS/ME friend.)

    Mary Louise Cardillo: Female in early 40s. Died July 1995. Cause of death: autopsy revealed nothing. Died in hospital. When her physician, Anthony Komaroff, M.D., requested samples and sent them to another laboratory, high levels of HHV6 were found. A warm and brave person who so wanted to enjoy life. (Source: letter and test results from surviving parents, friends.)

    Rebecca Bramlett Carter, 47, died December 26, 2005, at St. Mary’s Hospital. “Becky” was a CFIDS support group leader from Watkinsville, GA, member of her church choir and involved with Le Leche League and the symphony orchestra. A caring and compassionate long term patient, Becky was admired and loved by many in the CFIDS community. She left her husband, Stan, and three children, daughters Shelley Elizabeth and Anna Carol and son, Colton Harrison, as well as her parents, Dr. Gene Bramlett and Carol Hilton Bramlett. Taken from us far too early in life, Becky will be missed by many. Donations in her memory were made to further CFIDS research.

    Ruth D. Carter, 66, of Belmont, MA died on December 20, 2003. Ruth died by her own hand after a new physician told her to find another physician to prescribe her medications. After 15 years of struggling with ME and housebound for more than the last four, Ruth decided that she had had enough. Ruth graduated from the University of Chicago, was invited to participate in the U.S. Olympics for her horsemanship, and was an avid skier. Extremely intelligent and vocal, Ruth made her views known to government employees and embassy personnel. Ruth is missed by a caring and supportive husband, Weld, her son and daughter-in-law from Manila, David and Cris Rosenthal, and two grandsons along with a number of friends.

    Emily Louise Chapman, 20, died by her own hand in February of 2006 in a psychiatric unit of Cumberland Hospital in Australia where she was admitted for a previous suicide attempt. She had been admitted to a hospital nine times before with severe pancreatitis. She had been diagnosed with “CFS” when she was 13. An inquest is now underway because she had expressed such fear of a nurse there who felt she was not really ill, had been deliberately kept awake and denied her medication and no CPR was attempted. Emily was a member of the New Writers Group, Inc. and her poem, The River, is on their website where they wrote, “Emily is remembered by all who knew her as someone whose suffering intensified her interest in others…before her illness she excelled in sport, academic work and design. In defiance of her sickness, she took every opportunity to learn at home and communicate with her friends and family.”

    Carol Graham Chudley. Died May, 1998 of a freak accident after years of suffering from CFIDS/ME. Carol was born in Illinois but became a Canadian citizen in 1967. A gifted potter, gardener, and author, one can read of her suffering in Between Gardens, published in 1999 by Polestar Book Publishers of Canada.

    Kathie Claar: 52 year-old female: Died Aug. 24 1996. Long term CFIDS/ME patient. Cause of death: self-induced drug overdose. Oak Harbor, WA, USA. (Source: letter from friend.)

    Bess Clark died in 1999 after a long struggle with cancer. A support group leader and a warm and compassionate person, Bess taught her group how to have fun while barely functioning. (Source: Dolores Hudson)

    Ruth Clark, 69, a Wisconsin CFIDS Association support contact, died on March 12, 2003 of liver failure. Ruth was a long time CFIDS/ME patient who sought alternative and traditional care for treatment of severely disabling symptoms. Alternative practitioners blamed traditional medicine for her liver failure and traditional practitioners blamed alternative. Ruth, herself, was too sick to care. Nothing helped her pain, stomach and intestinal problems. Ruth was often unable to eat. She was a real life teeny tiny woman but one with a big heart and the drive to help others with CFIDS/ME as best she could. Ruth leaves her husband and other family members. (Source: Pat Fero, Wisconsin CFS)

    Theodore Cocaine, 36. Died Dec. 1998. Cause of death: massive coronary.

    Carol Sue Coffee died August 7 in a hospital at the age of 57 “fighting bravely to the very end.” Carol enjoyed golf, reading and computer work and had special friends and relatives who miss her. She tried everything possible to “heal” from her lengthy disease, and she appreciated each day. She is survived by her husband, Jim, of Jenison, Michigan and many relatives and friends. (Source: Support group leader and friend)

    Diane M. Comeau, 49, died in mid-August of 2001. She had just turned 49 in May. Diane was in ICU for 10 days with an abscess in her groin and her body became sepsis. Tests and scans showed nothing. Diane had suffered for most of her life with CFIDS/ME and FMS. She was a Captain in the Civil Air Patrol where she was valued for her dedication. “She gave 100% to cadets,” said a relative. A memorial service in Arizona honored her with a fly-by. A close friend remarked that she never let her pain hold her back. Her mother, Barbara Murray, also suffers from this disease. In addition to her parents, Diane left 4 brothers, David, Gary, Stephen, and Richard. Continuing to help others even after death, donations have been requested to go toward research via The National CFIDS Foundation, Inc.

    Greg Cooper died at age 40 of causes unrelated to his CFIDS/ME in March of 2000. Greg leaves a daughter and many members of his support group in California who miss him. He was on an experimental trial of Ampligen but found it was not a help and had adverse effects.

    Cynthia Coultier: Female, age unknown. Died 1998 from complications of CFIDS/ME. Tested highly positive to Chlamydia pneumonia but her physician refused suggested treatment for this. Left two sons and grandchildren. Although Cynthia had owned her own business, she was not eligible for any disability. (Source: Support group leader of National CFIDS Foundation.)

    Gerald Ross Crum, 59, of Carson City, NV, died June 5th, 2008. Born in California, he was a former computer programmer following a stint in the U.S. Navy. Jerry experienced seizures, neurological problems and fatigue in 1986. It took over a year and several physicians to finally get a diagnosis of CFIDS/ME. Jerry was one of the first four patients on the original pilot trial of Ampligen™ and a court order allowed him to stay on the drug longer. He is the third of those first four to be added to this Memorial List. He was an activist for CFIDS/ME until he developed mantle cell lymphoma and tried antivirals and many other regimes until his death. His leaves his wife, Colleen (“Coco”), who stood by him faithfully thoughout his years of suffering, his parents and a brother along with many others who will miss him.

    Andrea Cunnigham died at aged 46. She had myalgic encephalomyelitis since 1988 and was diagnosed with cancer in early 1997. She died just a few weeks after this last diagnosis. From Wales, UK, Andrea was in touch with sufferers from all over the UK sharing information and support before the internet became popular. Her passing was a huge shock to many of her friends. (Source: Laura Jones)

    Nancy Cunningham, a member of the Seacoast NCF Chapter Support Group, died on April 16, 2004, at a hospital in Dover, New Hampshire at age 65. Before getting ME/CFIDS, Nancy had been employed for 30 years at Eastern Air Devices. A native of Maine, Nancy is missed by her husband of 46 years, Percy, two daughters, two granddaughters and a brother as well as her beloved cat and dog.

    Judith Curren: 42 year-old female. Died Aug. 1996. Cause of death: Suicide with assistance of Dr. Jack Kevorkian. Occupation: Registered nurse. Left husband, 2 small children. Was totally bedridden, paralyzed on one side. Had a wonderful sense of humor. Husband stopped her first attempt to meet with Dr. Kevorkian but she insisted she did not want to die in a nursing home. Her husband, a physician, had to move out of state following the publicity following her death. They were Massachusetts residents. (Source: personal friend, newspaper articles.)

    Stephen S. Czerkas, a long-term patient, took his own life on January 10,1999 to escape the poverty, pain, and legal hassles brought on by this illness. Donald Scott, founder of Common Cause, said Steve’s wife had left him as do many partners of patients.

    Skye Dailor: 14 year-old female. Died Sept. 1, 1990. Cause of death: heart attack caused by lethal dose of pills following taunts by classmates. Her physician, David S. Bell, M.D., FAAP, dedicated his first book in her memory.

    Mike Delano: 47 year-old male. Died Mar 14, 1997. Cause of death: Kidney failure. Occupation: Football and basketball star. (Source: CFIDS/ME support group leader.)

    Frances (Gina) Regina DeLoach died at home on March 13, 2007 after many years of suffering with CFIDS/ME/FMS. Gina was a warm and loving person who went out of her way to try to help others. She worked as a phlebotomist in a laboratory in Tuscaloosa, AL and was would always go out of her way to assist others when possible. Her parents and sister preceded her in her death but her death was noted by many friends who continue to miss her. Gina was in her 60′s when she died. (Source: Elaine Katz)

    Jane Dennison, a long-term sufferer of CFIDS/ME, died in 2003 of an overdose. Jane was a resident of Illinois. (Source: Carol Howard, Pres., Chicago CFS Assoc.)

    Lyn Drysdale: female: Died 1995. (Source: BRAME.)

    Lorna Duncan: Died May 99. Had CFIDS/ME and developed Cancer. She was on The Board of Directors for the ME Victoria Association.

    Elizabeth Egerton, 42 years old, died suddenly on Feb. 7, 2000, while under anesthesia for a minor operation. Elizabeth had CFIDS/ME for 10 years and is sadly missed by both family and friends. She was a quiet and caring person. (Source: Alison Kennedy.)

    Ceri Evans died by his own hand in August of 2002 at age 36. Ceri, from Wales, was a socialism activist who participated in many struggles. In 1998, he was diagnosed with an occupational injury followed by a diagnosis of “Chronic Fatigue Syndrome.” A combination of anti-depressants were prescribed for his “mental illness.” (Source: online memorial)

    Linda Farrin died in 2001 after two decades of having CFIDS/ME. Linda lost much after contracting CFIDS/ME, but continued to fight and began a support group in Massachusetts to try and help others. The cause of death was listed as Primary Pulmonary Hypertension.

    Casey Ryan Fero died on July 4, 2005 in his sleep at age 23. An autopsy showed he died of myocarditis, a viral infection of the heart muscle. Casey had CFIDS/ME since the age of nine. He had recently gotten his Associate Degree and was planning on further education as he worked as a shift manager. Casey was the son of Pat and Bruce Fero of Sun Prairie, WI. A kind and gentle person, he also leaves a sister, Mykol Susan, his grandparents, aunts and uncles and many cousins. (Source: Casey’s mother)

    Joseph Fiducia, M.D.: male, age unknown. Died 1980s by own hand. Gynecologist who began seeing CFIDS/ME patients following his own illness. Voluntary support group leader and advocate.

    Sue Firth, The first vice-chair of England’s 25% ME Group for severe ME patients, died in May 2008. Although bedridden, Sue wrote articles, appeared on television and raised funds for ME by making cards as well as remaining active in other charitable ventures. She had a wonderful sense of humour and her compassion and strength were an inspiration. Sue left her husband, Mike and two teenaged sons, James and Tom.

    Angela Flack died in January of 2007 from an inoperable brain tumor that was discovered just six months prior to her death. “Angie” was a trustee of The ME Association in England and passionate about ME recognition and the injustices that resulted in poor information about the disease. She was a long-term sufferer of ME who coped with the challenge of living by herself with the illness by trying to make a difference in the world of CFIDS/ME. (Source: The ME Association)

    Kevin Foley: was in his early 40s and living in Tennessee with CFIDS/ME. He had improved enough to work part-time but did not know alcohol would interfere with his medications. The death of this long-term patient was an unintended consequence.

    John Gakingsway: died early in 2000 from complications of CFIDS. John was the founder of a “CFS/Fibro Support Group” on the internet for patients in the state of Georgia. His group, “Peaches,” is still going b today. He was forced to move back to Michigan when his condition deteriorated and spent his last Christmas with his granddaughters. (Source: Wife and fellow PWME/C, Karen)

    Kim Gallagher died at the age of 38 from stomach cancer on November 18 of 2001. Kim was a two-time Olympic medalist who began her medalist career in Pennsylvania while in high school. One record in a 1,500 meter race still stands today. She moved to southern California after a year in college to train in Santa Monica and won both a silver and bronze in the Olympic 800 meter race. She suffered from CFIDS/ME and said, “I felt like I was being stabbed in the stomach,” after one of her races. She was previously operated on for polycystic ovaries.

    Ray Gardner: Male, age unknown. Died 1993. Died from complications of CFIDS/ME. Loving father, husband. (Source: support group leader in Massachusetts.)

    Nancy Gavel died on Easter Sunday, 2004 after a long struggle with ME/CFIDS. Nancy was born in Geneva, Ohio in 1941 and died of cancer after just one radiation treatment. Her experiences with physicians who dismissed her complaints made her avoid them as much as possible and she was taken to a hospital by ambulance only when her pain became unbearable. She resided in California. Nancy left a husband of 37 years, Roger, and a daughter, Kate, along with three grandchildren.

    Helen Jean Gawthrop, 52, died September 19, 2007 at home in Athens, Ohio from complications after a multi-year struggle with CFIDS/ME. A cum laude graduate of Marietta College, Helen worked until 1999 for the Ohio University Press. A well-read history buff, Helen loved the outdoors along with thoroughbred horses. Her battle with CFIDS/ME led her to investigate many alternative protocols as well as seeing one of the nation’s leading specialists. Helen kept in touch with many other patients via e-mail and telephone and her fellow patients found her to be witty and brave. Her father, Paul, preceded her in death. Helen left her brother, James, and his wife along with her mother, Nancy and many friends and extended family members who miss her dearly. (Source: family member)

    Christine Geifing died in 1996 after a long struggle with CFIDS/ME. (Source: BRAME)

    Barbara Ramos Gibson, 63, died on May 1, 2006 from complications of CFIDS/ME and fibromyalgia. She was active in Florida trying to make a difference in the way the disease was viewed as well as reaching out to others. She had become so severe that she was unable to walk and she was due to enter a nursing home when her life ended. Barbara leaves her daughters, Joan Gunther and Karen Mullins, three stepsons and grandchildren along with many patients who will remember her efforts to help and her kindness. (Source: family member)

    Lynn Gilderdale, 31, died on December 4, 2008. Lynn was a healthy teenager in the UK who enjoyed swimming, sailing and cycling when she was struck by myalgic encephalomyelitis at age 14. The disease left her bedridden, partially paralysed, unable to talk. She had to use sign language to communicate with her parents and a pocket computer to talk to her online friends. She was in intense pain and it was a major factor in her suicide. She leaves her mother, Kay, who was an advocate for ME and her father Richard, both who cared for her. One journalist who wrote a story about Lynn said “I have seen African children suffering from starvation, met people dying of AIDS, patients paralysed from the neck down, others in the last stages of terminal cancer, but I had never seen a living person as desperately ill as Lynn Gilderdale.” Her friends knew her online as Jessie Oliver.

    Myra Gray Goodman: female, died Feb. 4, 1995. Was a feature writer for Boston Herald, support group leader in Vermont. Died of heart complications due to CFIDS/ME. (Source: husband, Lee Dana Goodman.)

    Barbara Gove: female in early 40s. Died 1994 at Framingham, MA hospital. Cause of death: atypical pneumonia usually seen in AIDS. (Source: Support group leader.)

    Candy Graham, a long-term patient of CFIDS/ME, died of complications of the disease in 2003. Candy was from Fairfield, CA. (Source: Carol Howard, Support Group Leader)

    Lorene Sutton Gray died early in January, 2005 at a Oconee Memorial Hospital in Georgia. The autopsy report reported four main reasons for death including “CFS” which may be a first in this country. Lorene became ill in 1983 but worsened after breast implants and removal. After many misdiagnoses, she was finally diagnosed with ME/CFIDS/FM. Lorene was an ardent advocate for those women with breast implants. A native of Tennessee, she is survived by her husband, John, who remained a devoted caregiver as she worsened, her mother, a daughter, Lisa Morris, two brothers and a sister as well as a grandson. Her son, Randy, preceded her own death. Her husband, John, donated samples following her death to researchers funded by the National CFIDS Foundation to help further research. A long and thorough autopsy found her death was from shock, acute renal failure, a breakdown of muscle fibers known as rhabdomyloysis, and “chronic fatigue syndrome/fibromyalgia” as well as finding major damage to many organs and a lymphatic completely unable to operate. Her husband’s willingness to share the information after Lorene’s death will bring answers to this illness that were formally unavailable. In death, Lorene may well have provided so much more help due to the devotion of those who survived her and her own motivation to help others which had so impressed all that knew her. (Source: support group leader)

    Mrs. Joseph Griggs: female, age/date of death unknown. Cause of death: toxoplasmosis and bacterial infection of brain. (Source: letter.)

    Linda Grommes, 54, died of CFIDS/ME on August 1, 2007 in Fountain Hills, AZ. For 31 years, since contracting what seemed like the flu that wouldn’t go away, Linda was forced to give up many things but remained hopeful. Linda earned her BS degree and was the class valedictorian. A former systems analyst for the Upjohn Company in Kalamazoo, MI, Linda found a new avocation after she became sick and bred and raised Shetland Sheepdogs transcending the disease again and again. When a further decline in her health forced her to give that up, she found other ways to enjoy life and remained hopeful, trying experimental treatments and being an online contributor to a group. She was nearly bed-bound during her last five years of life and suffered greatly, but continued to inspire hope in all around her. Linda leaves her husband, Bob, her mother and two adult stepchildren. (Source: Bob Grommes)

    Janeen Guidry: female, about 50 years-old. Died 1994 of causes unknown. (Source: letter from family member.)

    Keshan Gunawardena, 13, and his mother, Dinesha, 45, both died of an overdose of a prescribed drug in April of 2001. Dinesha was an accountant for British Airways before she became ill with CFIDS/ME. Keshan was a student at England’s Eton where he was considered to be a brilliant scholar who had won a scholarship the previous year. Dinesha and her husband came from Sri Lanka in the 1970’s. He was a physician and the director of a clinical research company. A British tabloid, The Guardian, attributed her action to depression.

    Charles Thomas Halder: 72 year-old male. Date and cause of death unknown. Long-term patient. (Source: family member.)

    Jean Hardy: female, mid-50s, cause of death: suicide citing disability and pain. (Source: CFIDS/ME support group leader and friend.)

    Tracy Lynn Harmon, 36, died in 2004 in Ashville, North Carolina, after years of mistreatment and abuse by mental health professionals. When in third grade, Tracy was diagnosed with a mental illness and was put on medications that were not needed. Although she was finally diagnosed correctly, when a teenager, with CFIDS/ME as well as FMS, she continued to be treated by those in the mental health field who insisted that her mother was a problem (Maunchausen’s-by-proxie). Due to multiple absences, she was thrown out of school at age 16. The medication the mental health practitioners had her taking would cause her to hallucinate but when Tracey was too tired to get up early in the morning for breakfast while at a mental institution, she would be punished. They convinced Tracy that, without the medications given to her for a mental illness, she would die. She continued to take the medication while living with her mother until she died. Tracy was the daughter of Nancy and the late Louis Harmon and left a younger brother, Lee. (Source: family)

    Robert Duane Harrington, 58, took his own life on January 14 of 2006 after nearly 30 years of severe CFIDS/ME. Bob was a vocal advocate of his disease and never hesitated to voice his opinion. He had friends from around the world via the internet as people appreciated his maturity, compassion and sensitivity. A member of The National CFIDS Foundation, he was hopeful that research would help the many millions suffering and celebrated our achievements via funding research. Bob’s mother suffered from the same illness. Just a week before he was to be remarried in his 20′s, Bob, an executive with Proctor and Gamble, had symptoms that made him think he had a brain tumor. When that proved wrong, Bob married but found he had to change his working habits until he finally worsened to the point where he could no longer work. Sensitivities, especially problems with mold, proved to be so incapacitating to Bob in his last years, that he was desperate to find a mold-free environment he could afford to live in. Born in Washington, he lived in Texas and Oklahoma. Bob fought for so long to find relief but became progressively worse. He will be missed by a multitude of friends along with his five children and nine grandchildren.

    Margaret Hay died of complications from CFIDS/ME in 2003. Margaret was from Australia. (Source: ACT CFIDS/ME Society)

    Janis (Jan) Henning died September 3, 2007 at age 57 at home in Lincoln, Nebraska. She had suffered from ME/CFIDS for over 15 years. She had cancer for 2 years which was cured with chemotherapy. Her ME continued relentlessly, however, and the cancer returned with a vengence that involved every system of her body. Her husband, John, said, “The disease just got the best of her.” She was a wonderful, empathetic friend with a positive and witty outlook on life. She never accepted the “F” label (chronic “fatigue” syndrome) and referred to her disease as myalgic encephalomyelitis (ME). Her body has been donated to the University in Nebraska at her request. Survivors include her husband, a son, Scott, a daughter-in-law and one grandson. (Source: a close friend)

    Jhan Hiber, 53, died on October 4, 2000 by his own hand in Anchorage, Alaska, after receiving news of his declining health. John moved, as a child, to Alaska. He had epilepsy since birth, developed rheumatoid arthritis and CFIDS/ME and, in the 90s was diagnosed with fibromyalgia and amyotrophic lateral sclerosis (Lou Gehrig’s disease). He was participating in experimental treatments after spending two decades in radio and television media, primarily in sports broadcasting. Living in Carmel, CA seeking treatment and unable to work since 1991, he was attending a media convention in Alaska. He is survived by his brother, Tom Bowles, sister Barbara Stuart, and son David Gohrband. (Source: Kathleen Houghton)

    Jenny Hill died in April, 2007, at age 24 in Australia. According to The Sydney Morning Herald, “A bout of flu progressed into headaches and exceptional tiredness, and by the next year, with no resolution in sight, she was referred to a psychiatrist. Three years later a leading immunologist still thought she was having trouble re-entering normal life after being knocked around by a virus. He rescribed gradually increasing exercise — a controversial therapy for people with presumed chronic fatigue syndrome — and a self-help book.” Two weeks before her death, her diagnosis of “metochondrial neurogastointestinal encephalomyopathy” was confirmed. Her own words were spoken at her funeral: “It is not much wonder sufferers become depressed when they see the whole world passing them by. Life is going on without them. it is like trying to catch as escalator that is just beyond reach.”

    Betty Ann Hirschfeld: female, 43 years-old. Died July 24, 1989. Long term patient. Cause of death: took her own life. (Source: family member.)

    Matthew Hodding: 20, took his own life in 2006 after suffering acutely with CFIDS/ME for over half his short life. His father told the coroner’s office that his son believed in reincarnation and he “was seeking a new life. Matthew suffered from extreme pain in addition to numerous other symptoms and social isolation. (Source: East Anglian Daily Times, England)

    Susan Hodge: Female: age, date, and cause of death unknown.

    Sharon Horejs, R.N., died while battling pneumonia brought on by chemotherapy for cancer while in a hospital in late 2002. Sharon was a beacon of hope for hundreds and hundreds of patients in southern California who got her newsletter for decades. She was highly intelligent and shared her knowledge freely and openly. Sharon, from Laguna Niguel, California, left her husband, Dennis.

    Eva Horton died August 30, 2002, of complications of CFIDS/ME. Eva was one of the founding members of the Greensboro, NC, Support Group and will be remembered by the many patients she reached out to with CFIDS/ME. Before becoming disabled, Eva worked in advertising for one of the nation’s major furniture groups. She once told a fellow patient that she had “cried all the tears out of her … she didn’t know if she had any more left.” She endured all the pain, disbelief, abandonment, suffering and agony this disease brings with it but she endured for many years. She leaves a daughter, Amber, and many beloved friends who hope she has reached a place where there is no more suffering. (Source: Support Group Friend)

    Michael Hunt, 16, was a talented soccer player who was unable to play due to M.E. He fell from a bridge and was hit by a train. Michael had recovered and was able to play his favorite sport once more when he relapsed again. Michael was from England and his young life was ended in October of 1998. (Source: CAME)

    Alison Hunter struggled with many years as a child with CFIDS/ME in Australia. She died at age 19 of complications of the disease. A foundation was named in her memory. Allie’s dream was that every young person with CFIDS/ME would not be alone. A section of The National Forum is called “Allie’s Garden” for news of young people with CFIDS/ME.

    Telbert C. Hutchison: 60 year-old male. Died Mar 16, 1997. Cause of death: Mitral valve prolapse as consequence of long-term CFIDS/ME. Occupation: photographer. (Source: family member.)

    L. LeAnne Hyneman , 43, died July 11, 2007 of cardiac arrest in Georgia after a difficult 20 year battle with CFIDS/ME. LeAnne was a beautiful, intelligent and “courageous beyond words” person who never complained. After graduating from the University of Georgia, she worked as a paralegal for a year before becoming sick. She was a 1990 participant in the Ampligen trial under the direction of Paul Cheney, M.D. and was rediagnosed with multiple sclerosis near the very end of her life. Her last years saw frequent hospitalizations, a trial on an MS drug that brought on seizures, and even had her teeth break off at the gumline. LeAnne remained hopeful until the end and is missed by her mother, Pat, whom she lived with after becoming ill, a brother, sister and many other relatives and friends. (Source: mother)

    Roger Ice died of complications of CFIDS/ME in 2003 in Galt, CA after suffering for many years. Roger left a wife. (Source: Support Group Leader)

    Joan Luther Irvine: 49 year-old female. Died Sept. 5, 1996 in Senoma, AZ. A nine year survivor of CFIDS/ME. Cause of death: complications of CFIDS/ME by an overdose of a prescription medicine to which she knowingly was allergic. Ms. Irvine wrote her own obituary, citing “CFIDS complications” as the cause. She also wrote, “I have no qualms about the quality and wonderment and beauty of my life. I had the best of lives — a good, active, and productive life for 41 years. Who could ask for more? Lover of truth and humankind, of all living things. Avid hiker, backpacker, tennis player, swimmer, and walker.” She wrote letter she received from CDC warning against donating blood but a national group refused to publicize the letter. (Source: The Desert Sun, Oct. 5, 1996 and e-mail written before her death.)

    Joy Jefferson: female in 40s. Died Oct. 1997. Tested extremely high to Chlamydia pneumonia but lost her valiant battle with CFIDS/ME. She left a husband and many friends in New Mexico who described her as brilliant and caring. (Source: friend.)

    Alan J. Jenkins died on March 30, 1998 at age 25 from complications of CFIDS/ME. Alan, from Filkirk in Scotland, was remembered by a friend as “a lovely light that never got the chance to shine.” (Source: friend)

    Linda Jenkins: 42 year-old female. Died Apr. 20, 1996. Cause of death: heart attack. Death attributed to complications from CFIDS/ME. (Source: support group leader.)

    Denise Jerry: Female in forties. Date of death unknown. Cause of death: heart attack attributed to CFIDS/ME. Co-leader of Massachusetts support group, founder and leader of Plattsburg CFIDS group. (Source: phone call from support group member.)

    Nancy Johnson, 62, died on Mother’s Day, 2001, after decades of battling CFIDS/ME with dignity and courage. Nancy was diagnosed in1986 and spent years trying to help others. She was a support group leader in North Carolina who put out a newsletter and worked tirelessly advocating for the illness. She was helped and supported by her husband, Ralph, who remained a constant caregiver and supporter. Less than three years ago, she was diagnosed with lung cancer. Wrote a friend, “Sometimes her chemo and cancer pain screamed louder than her CFIDS/ME but it was always there. On the days when most cancer patients would have been able to get out or feel better, Nancy had the double duty of then dealing with her ME.” In her husband’s words, Nancy was “a very special person.” In addition to her husband, Nancy was survived by adult children.

    Gareth Jones-Roberts, Jr, 48, died in February of 2009 in the Australian wildfires. He had recently moved back home to be with his parents when his CFIDS/ME worsened. Gareth had gone to town after the loss of power to get fuel to operate a water pump. A firewall forced his car off the road as he was returning, taking his life. Gareth was an inventor who loved biking. He left his parents, John and Norma. (Source: Herald Sun)

    Ada R. Jordan, 65, of Belton, SC, died in April after suffering for many years with CFIDS/ME. Ada was predeceased by a daughter, Teri Lanee Malone and left her son, Tony Malone, a brother and a grandchild. Ada kept in touch with other patients from her support group and died at home. (Source: friend)

    Nancy M. Kaiser, 72, a longtime resident of New Mexico, passed away on June 15, 2008 due to complications of CFIDS/ME. Nancy was a golf enthusiast who was a homemaker and volunteer before she became disabled with CFIDS/ME. She spent years battling this illness on the front lines and was well known thoughout the world community of patients having been written up in Osler’s Web, Newsweek, and Reader’s Digest as “Patient 00″, the first patient to be on the experimental drug, Ampligen. For years, she offered to speak to any patient contemplating going on Ampligen and telling them the truth that the drug, for the final years she was on it until she opted to go off of it, created many more problems than it helped. She asked the manufacturer, Hemispherx BioPharma, do a longterm followup on the drug, but they didn’t respond. Nancy was a staunch advocate for CFIDS/ME, was interviewed by MSNBC and spoke at many conferences to educate physicians and formed many friendships within the CFIDS/ME community. She was an essential volunteer for the National CFIDS Foundation and all contributions after her death were directed to go toward research via that charity. Nancy is survived by her husband, James A. Kaiser and three children, Laurie Crnkovich and her husband Greg, James M. Kaiser and Deanna Ochoa and David Kaiser and his wife, Peggy as well as two grandsons.

    Dorothy Kayner: female, died 1998 of cancer. An active advocate until she was too ill to participate. (Source: Chicago support group newsletter.)

    Kathleen Kelly: Female, age unknown. Died Mar 1996 from suicide. In a note, she wrote that she died from CFIDS/ME. “I can’t go anywhere and don’t have a moment free of pain. I’m not so much depressed as I am angry because the medical profession is too wrapped up in saving money (rather than) people.” (Source: CFIDS support group newsletter.)

    Anne Marie Kennedy: 40s female. Died Aug. 1998 “after a long bout with breast cancer and bone cancer and chronic fatigue syndrome (CFS). Ann Marie had taught French, English, and general studies for many years in Massachusetts and Ohio. She was an accomplished pianist and was also known for her talents as a painter and sketch artist. A friend wrote: “There are no words to describe her long and valiant struggle, nor the courage and commitment of her mother…I’ll always remember Ann Marie… confined to a wheelchair, but beautiful and golden and ethereal and charming…” (Source: Boston College Alum notes.)

    David Killingbeck: Male, age unknown. Died Sept. 1996. Had CFIDS/ME for 9 years. Died from complications of CFIDS in Victoria, Australia. (Source: letter.)

    Pamela Sue King, 62, died suddenly on May 13, 2005, at her home. Pamela had been disabled for about 5 years. A former cook at a dormitory at the University of the Pacific in Stockton, CA, Pam was a mother and grandmother. She was a member of the San Joaquin ME/FMSSupport Network in Woodbridge, CA. (Source: support group)

    Jeanine Isabelle Myers Knaff, 71, died of heart complications from CFIDS/ME on July 26, 2000. Jeanine was a long-term ME and FMS patient who was a registered nurse as well as a relentless searcher for answers which she shared with her Rockford, IL support group. Her daughter, Faith, has suffered from CFIDS/ME since a young teenager. Jeanine had an extensive library of CFIDS/ME information which has been donated to a local hospital. She was considered a heroine by many who knew her in her area. (Source: daughter)

    Joanne Kruger died of complications of CFIDS/ME in 1996. (Source: BRAME)

    Deborah A. LaMark of Camillus, NY, died at home in September of 2008, a day after her 52nd birthday after suffering for many years from CFIDS/ME. Debi was a corporate trainer for Blue Cross Blue Shield of Utica before becoming disabled from CFIDS/ME and, at the time of her demise, was enrolled in a nursing program. Debi loved gardening and cooking. Toward the end, Debi experienced many infections and endured a great deal of suffering. She is survived by her parents, Richard and Esther Frederick, a daughter, Sarah, and two brothers, David and Donald, many nieces and nephews. Donations for Debi were asked to be made to the National CFIDS Foundation to help others with CFIDS/ME by funding continuing research funding. (Source: Media and family member)

    Paul Lavenger, M.D. died in April of 1995 of colon cancer after suffering with CFIDS/ME for a decade. An internal medicine specialist, Dr. Lavenger had to retire after a 25 year career. His wife got CFIDS/ME just two years before he got ill. In 1991, he publicly criticized the government’s negligence in an interview in a New York newspaper as well as suggesting the disease was in epidemic proportions. (Source: Osler’s Web:Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson)

    Tom Lay, Jr. died on Sunday, June 23, 2002 at home in Middletown, Ohio from hepatitis/liver failure. Tom was a long-term PWME/C who was active on one of the first online support groups, Prodigy. Before becoming disabled with ME, Tom was an accountant. Although single, Tom’s family was supportive. He had hospice for the last month of his life. (Source: internet friend from CA)

    Tina Marlene Lech, 47, of Springdale, Arkansas, died March 12, 2005. After Tina was diagnosed with CFIDS/ME, she was also diagnosed with Fibromyalgia, scleroderma and Raynaud’s Syndrome. Many in her family have also been diagnosed with CFIDS/ME. She fought valiantly while suffering and, shortly before her death, had an operation. She was sent home to recuperate and died just days later. Tina is survived by her husband, a daughter, five sons, her mother, a brother and sister and six grandchildren. Her last message to all of us was, “Miss me but let me go.” (Source: Sister of deceased)

    Inez Lehrer died in her sleep during the summer of 2000 from an aneurysm. She was a five year sufferer of CFIDS/ME and had MCS as well. Although she lived in Pebble Beach, her son made her funeral arrangements in Tampa, Florida. Inez’s death was reported by her support group, the CFS/FMS/ME Support Group for the Central Coast (California) but she had been too ill to attend the group’s meetings.

    James S. LeRoy, 47. Died April 5, 1999 of unknown causes. Contracted CFIDS/MCS in October of 1982. Went on disability in 1993. Was formally a software consultant. Married another CFIDS patient, Sarah, in 1994. James worked tirelessly to help others with CFIDS/MCS and many now say, “He changed my life.” James is missed for his love, laughter, strength, intelligence, and skills by his wife, his parents, two sisters, and 23 nieces and nephews. (Source: Sarah LaBelle, widow)

    Martin Lev: Male, died 1992. (Source: BRAME)

    Joan Lidoff, Ph.D. a professor of English at the University of Texas at Austin, died on October 20, 1989, at age 45, of cardiac arrest. Dr. Lidoff had a Ph.D. from Harvard University and taught at the University of Massachusetts and Boston College before joining the faculty of joining the faculty at UT. She was a pioneer in women’s studies as well as an author. Joan struggled for years with what was then called “Chronic Epstein-Barr Virus.” Her heart complications seemed a direct result of her long-term illness. (Source: friend)

    Priscilla Loanes: Female. Died 1992 by her own hand. Was Boston’s first support group leader and she is still missed by many of her friends.

    Nancy Lou Loe: 56 year-old female. Died June 25, 1994. Cause of death: unknown. North Sound CFIDS Support Network Leader, she wrote shortly before her death, “The guilt, shame, and suggestion of others that there was nothing wrong were destroying me more than the illness.” (Source: Newspaper obit and letter by Nancy.)

    Amy Long, a long-term patient with CFIDS. Died late 1980-s by her own hand. Was one of the original eleven to be put on Ampligen on a pilot trial by HEM Pharmaceuticals. Amy was an acutely severe patient.

    Peggy Lowell died on March 27th, 2007 at the age of 54. Peggy kept track of the data base for the River Falls (Wisconsin) CFIDS Support Group, printed out their mailing labels and contributed some funny cartoons about her own experiences of living with CFIDS/ME. A progressively severe patient who experienced a great deal of pain, Peggy courageously began her own home business, the Lowell NcNaughton Soap Company. Living alone, Peggy worsened and realized she could no longer care for herself. A nursing home seemed inevitable. She decided to take the only other option and end her life. Peggy will be missed by many friends as well as her sister, Pat Hammerback. (Source: Sally Borden)

    Audrey May Cornish MacKenzie, 65, died on June 4th, 2007, in Toronto, Canada. Audrey was a nurse who got CFIDS/ME over 25 years before her death. From 2000 to 2006, Audrey was the president of the Myalgic Encephalomyelitis Association of Ontario. She put out a newsletter, did fundraising and addressed politicians. A friend described her as “kind and caring…frail but formidable and fiercely determined.” (Source: ME Assoc. of Ontario)

    Joan Mansell died in September of 2002 of a heart attack. Joan was a member of the New South Wales, Australian group of the Northern Rivers CFIDS/ME/FM Support Organization and was a long-term patient with CFIDS/ME. She was 86 when she passed away. (Source: Merle Fullerton, NR CFIDS/ME/FM)

    Glenn Marcus: male in early 20s, 1994. Cause: Unknown. Autopsy showed stomach seemingly exploded with bits found throughout body. Died in his sleep while attending college part-time in California. A Massachusetts resident, he had CFIDS/ME since a young teen. Remembered as a warm, cheerful youth with many unfulfilled dreams. Survived by one older brother and parents. A memorial fund that distributed library books in his name was established. (Source: parents, support group leader.)

    Leslie A. Masewicz of Del Mar, CA, died in October of 1999 due to the harassment and badgering of UNUM, her long-term disability company, combined with the ravages of her illness. Leslie was scheduled to make a TV appearance in the spring of 1999 but became too frightened. In 1997, she had written the Department of Labor about her abuse and asked, “How is this horrific activity allowed to happen and to continue?” Leslie was diagnosed with CFIDS/ME.

    Jim Maude: male, age, date of death unknown. Cause of death: Liver and spleen damage due to CFIDS/ME. New York City resident, had been employed in a workplace where seven people now suffer from CFIDS/ME. (Source: colleague letter.)

    George S. Ascott May: Male, 39 years-old. Died Sept. 6, 1995. Cause of death: unknown. Occupation: airline rated pilot and printing specialist. (Source: letter from friend and obit.)

    Lois McAtee: 52 year-old female. Died 1992. Cause of death: lymphoma attributed to CFIDS/ME. Long-term care nurse. Her two daughters, one grandchild, and one niece also have CFIDS/ME.

    Judy Elaine McCraney, 56, died on September 8, 2008 of lung and brain cancer. Residing in South Carolina, Judy fought a long and very heroic battle with CFIDS/ME. Judy will be remembered as a lover of all people, nature and animals. She left her husband of 38 years, Ken S. McCraney as well as a son, Greg and two brothers. She also left her cat, Angel, who was devoted to her. She is missed by many friends along with her family. (Souce: J. Redmon)

    Kay McDonald, 54, died of smoke inhalation when her apartment building burned. Kay had been ill with CFIDS/ME since age 20. She is sadly missed by many members of her Athens, GA support group. Kay left husband, Bill.

    Nicola McNougher, 43, traveled to Switzerland in 2008 to take her own life after suffering from intense ME pain for many years. Helen, who was a teacher and psychologist in England, had severe systitis and kidney problems before being diagnosed with ME in the 1990′s. She said, “My life has become an inhumane existence.” She left a husband and two teenaged children whom she referred to when she said, “I believe they have lost their mother to ME.” Her last act provided tissue samples for medical research.

    Kathleen “Kitty” Meeks, 54, died on March 24, 2001. She valiantly fought a battle against both breast cancer and CFIDS/ME for many years. Kitty lived in southern California and was active in her cancer support group. Her sister, Vivien Haynes, an CFIDS/ME activist, felt it hypocritical to complain about her own pain when her sister had battled cancer as well as CFIDS/ME with FMS. She is greatly missed.

    Kara Ann Menowske, 36, died June 3, 2001 of complications from Myalgic encephalomyelitis. Kara graduated Kathryn Gibbs and worked for an investment firm until what appeared to be an ongoing “flu” forced her to stop working nearly 10 years ago. An autopsy was inconclusive. The whimpering of Kara’s dog alerted her mother who found Kara dead. Kara left her parents, a sister, and brother, all of Massachusetts. Donations in her memory have gone to research through the National CFIDS Foundation.

    Harry Metsemakers, a patient who was online with a group for the United Kingdom’s ME patients, died on July 2nd of a sudden heart attack. “Harry was warm and caring and reac

  82. #82 ERV
    June 18, 2010

    dt– Its forums like that that make me feel so sorry for people with CFS. There are several people who have commented here, and several Ive exchanged emails with that clearly arent nuts. But that forum is chock-full of people who clearly have hypochondria (and all the symptoms it brings along), and fixation/obsessive issues. Im not at all surprised I get the honor of being a fixation point.

    Were you here during The Kwok Affair? Its like a forum full of Kwoks. Fixated, agitated, mentally unwell people who refuse to get help.

    sue– “i cannot afford stem cell therapy or ampligen and i certainly cannot travel anymore in this condition.”
    You really dont get it.

    There is no evidence supporting any of that crap. June 18, 2010, YOU ARE WASTING YOUR MONEY/TIME/ENERGY on that CRAP.

    You left in a comment here that you spent ‘hundreds of thousands of dollars’ on ‘test’, but you live in CANADA. The only way its physically possible for you to have spent all that money is that you were DUPED into shipping your blood off to ‘labs’ like the WPI et crap for non-physician-approved tests that your health care system wouldnt pay for. How did that work out for you? CRAPPY? Almost as if you flushed that money down the toilet, cause you were buying CRAP?

    In all seriousness, it is not normal to be obsessed with your health like this. EVEN IF YOU REALLY ARE INFECTED WITH XMRV AND IT IS 100% CAUSING YOUR CFS, it would do you a world of good to see a councilor to see if you can calm down this obsession– constantly shiping off for cereal-box/comic book ‘tests’, constantly insisting on medications that will not help you, these are not normal thoughts or behaviors. Figuring out a way to control them will help you. Councilling is free in the US, so I know its free in Canada.

  83. #83 Lisa Simpson
    June 18, 2010

    ERV, unless you have evidence to back your claims of deliberate profiting off desperate patients, and are prepared to make your claims directly to those you accuse in an open forum, then your comments are nothing more than unsubstantiated slander made under the cover of anonymity. As such, they are essentially worthless. You’re just pissing in the wind here.

    Your posts about Judy Mikovits are disrespectful, overly emotional and offensive. Personal attacks and ridiculing don’t pass for intelligent discussion in any forum, regardless of credentials. They just reveal a stunning lack of maturity. She has been prepared to put her head on the block for what she believes in, risking career and reputation in doing so. For that alone she deserves respect, regardless of whether you or anybody else agree with her science or not.

    If you feel the need to take a stand against some perceived impropriety by WPI et al, then by all means do so but do something constructive, and stick with the provable. What you’re doing here is unprofessional. The irony of course being that you’re accusing others of unprofessionalism.

    Regarding your other allegation that she’s putting lives in danger by not speaking out against retroviral experimentation, Dr John Coffin doesn’t seem to share your concern on that one, or at least has not felt the need to issue any kind of urgent public warning that I’m aware of. In fact, he’s on record as recently as a few weeks ago suggesting trials of retrovirals by CFS patients as the quickest way to resolve the XMRV/CFS association debate. He has more than a rudimentary grasp of things, no? He’s also on record as saying that it’s not yet clear that ANY of the negative studies published to date have been true replication studies (in fact researchers involved in two of the studies at least have publicly admitted they were not), and that the presence of antibodies is “important confirmation” that patients in the original WPI study were actually infected with the virus and that lab contamination was not an issue.

    I’m assuming that you’re not presenting yourself as any kind of authority on either XMRV or retrovirology in these blogs and, by your own admission, you have zero interest in CFS, the question then begs asking, why should anybody really be interested in what you have to say about the WPI’s work in relation to either of these anyway?

    The bottom line is that regardless of your views or those of your supporters who are concerned about drug resistance developing, patients have the absolute right to choose what treatments they embark on, and that’s as it should be. At this stage, with the very small numbers of people in the CFS population who feel desperate enough to do so, the threat of drug resistance is a storm in a teacup. It’s way too soon to get hysterical about that. Drug resistance is not realistically going to reach any kind of crisis point in the six months or so it’s going to take to resolve this debate so it’s really a non-issue at this point. If you consider seriously ill people trying antivirals a “horrifying” situation then I would suggest that you do not really appreciate how horrifying an illness this is. If you think that the long-term seriously ill are going to put the wellbeing of the world at large before a chance of recovery then you must have lived a seriously sheltered life and I’m afraid that this is going to be the first of many disappointments to come for you.

    Also, these people may be desperately ill but they are not stupid. Don’t mistake their gratitude to Judy Mikovits for committing to research their misunderstood and under-researched disease as a blind following. You reveal your contempt for these patients by not crediting them with enough nouse to be able to weigh up the pros and cons of the situation before they make a decision about whether they wish to fork out $450 for an XMRV test, which by the way I doubt any seriously ill patient would consider a fortune. I doubt there are many with CFS who haven’t read every available bit of information negative or positive since that paper was published in October and who aren’t well aware of all the issues surrounding the test. Nobody is twisting anybody’s arm to have one.

    If you want to be taken seriously by anyone that matters drop the integrity assaults and make your posts less about your personal agenda and more about scientific facts that might sway the perhaps less seriously ill patients with time to ride this out from experimenting with toxic drugs (if that is indeed what your concern is). There is nothing is any of your posts to convince me that you’re qualified to comment for anybody else.

  84. #84 Prometheus
    June 18, 2010

    Spending the 24 grand per year on AZT and accompanying support scripts is not a bad idea.

    They should go ahead and buy them.

    Then send them here:

    http://www.pbs.org/wgbh/rxforsurvival/series/video/botswana1.html

    CFS sufferers might be surprised at the energy level you gain when you quit gazing into your own navel all day.

    I read some of those posts and they sound like they were written by Edwina Cutwater:

    http://www.youtube.com/watch?v=W_Sj8UNn0wQ

  85. #85 Kemanorel
    June 18, 2010

    But that forum is chock-full of people who clearly have hypochondria (and all the symptoms it brings along), and fixation/obsessive issues. Im not at all surprised I get the honor of being a fixation point.

    I don’t know if I’d go so far as to say they’re hypochondriacs, but I think there’s definitely a strong psychogenic component to making their CFS symptoms worse. Depression also seems a common theme. Here’s a sample of the ones I’ve seen:

    -I wish we could all be friends again. My life is so empty….I need you guys.

    -I, for one, don’t have the strength any more.

    And depression can cause psychogenic fatigue, which would exacerbate CFS symptoms.

    There is definitely fixation/obsession issues, and I think some mild paranoia. This is the response when the moderator warned them to simply be careful about any actual actions that could hurt ERVs future:

    Just consider carefully. What would you do if you knew that someone was downloading everything you write and then trying to hunt you down to discover your real identity with a view to depriving you – personally – of some future benefit? You would be forgiven for believing this person was stalking you. I really believe you are running very close to a very fine line between heated debate and legally actionable activity and am simply asking you to be careful – for your own sakes.

    Martlet, are you really seriously defending this person???? Are you REALLY serious here?

    OMG this is beyond ridiculous. I cannot believe I am reading these words on what is supposed to be a CFS/ME advocacy and support forum!!!!!!!! Coming from a moderator! ???

    Somebody pinch me.

    If ERV had evolved a view that made any sense and was not being heard, you might have an argument.

    Apparently wanting good scientific proceedures doesn’t make sense.

    They don’t seem to get that you’re not out to get CFS patients, but against poor proceedures. They also tend to be against anyone not 100% with them, even with the few “moderate” CFS sufferers who advocate for good testing where benefit can be demonstrated.

  86. #86 Kemanorel
    June 18, 2010

    Could someone explain the business with using the fact she’s in grad school as a negative? Would she be in better standing if she wasn’t in school and just had her Master’s?

    It’s like you just pay them money for several years and then when you’ve payed enough you download your education instantly and then get to be called “doctor.”

    Makes me wonder why online resume submission things for education level include stuff like “some college” or “some graduate school” because apparently it doesn’t count until you’ve graduated.

  87. #87 ERV
    June 18, 2010

    Kemanorel– *shrug* I just know someone with hypochondria. Recognizes their obsessions are irrational, normally does pretty well, but we are always on the lookout for some symptoms that theyre rearing up to have an episode… *shrug*

    And Im assuming the ‘only a student’ thing comes from having no idea how one gets a PhD.

    Also, I deal with HIV Deniers, Creationists, Anti-Vaxers, radical religionists– While I appreciate the comments of that mod (any and all rationality is appreciated), if CFSers want to add their name to that list of people who complain about me (regularly) they are free to do so. But the fact remains that complaining about ‘civility’ is what stupid and/or bested people do when they dont have a real argument/complaint.

    :-D

  88. #88 Kemanorel
    June 18, 2010

    I just know someone with hypochondria. Recognizes their obsessions are irrational, normally does pretty well, but we are always on the lookout for some symptoms that theyre rearing up to have an episode… *shrug*

    I can definitely see CFS being a good target for hypochondriacs as the main symptoms are fairly general and can have a bunch of other causes.

    And Im assuming the ‘only a student’ thing comes from having no idea how one gets a PhD.

    I postulate “grasping at straws,” but that’s just me. :-)

    But the fact remains that complaining about ‘civility’ is what stupid and/or bested people do when they dont have a real argument/complaint.

    Not to mention the continual misrepresentation of your argument.

  89. #89 dt
    June 18, 2010

    A not uncommon theme os that CFS/ME is caused by mitochondrial failure or dysfunction.
    How would you chose to manage that, if you had a choice?
    By taking a drug that specifically can cause mitochondrial toxicity (lactic acidosis, weakness myopathy, neuropathy, liver disease, lipodystrophy etc)?
    Sound like a good idea? OK – Go ahead. Take AZT. Bound to make you better.

  90. #90 Impish
    June 18, 2010

    It seems that at least one person got a different impression of the Cold Harbour presentations.

    http://webcasts.prous.com/AUA2010/ht…n=7&p=7,11872#

    Are Dr. Silverman and Dr. Coffin both considered non-promiment researchers? I guess finding the 3rd infectous retrovirus in humans is no big deal?

    As to taking or not taking anti-retroviral drugs and the danger of causing drug resistance. Doesn’t the fact that XMRV seems to have a low level of genetic diversity suggest a low rate of mutation and therefore a reduced chance of developing resistance. My understanding with HIV is that it mutates like a MoFo once it gets into a person as it attempts to evade the immune system.

    I suspect that reason doctors are giving the drugs to people with CFS is often they are very familiar with the patients as they have been sick for a LONG time. The doctors know them and feel really crappy that they haven’t been able to do something for them. Also the leading cause of death in CFS patients is suicide. Their disease leaves them isolated, alone and in constant misery. This leads to depression on top of the disease. The forum mentioned in some of the posts here is a way for people with the disease to be able to provide support to each other.

    As a disease it hasn’t received funding for a few reasons. 1) More women get it. 2) Once you get it it is hard to be an activist because you are so sick 3) There is no test for it as yet. 4) The attitudes of some (not all) of the posters here. 5) It is in the best interests of insurance companies to say that you are not sick so they don’t have to pay. That behaviour is not limited to the US.

    In one country (the UK) the main treatment offered to CFS suffers has been shown in peer-reviewed studies to have no effect. (CBT and Exercise). In fact some studies have shown due to the effects of the disease on the body that the exercise might actually be damaging.

    XMRV has been “embraced” be people who have CFS because they haven’t had any hope for a long long time. Even worse they get the offhand comments and constant looks that let them know that there is a huge segment of the population that thinks they are lazy, lying or depressed.

    The primary difference between someone with cancer, hiv or most other diseases is that they don’t have to put up with constant suggestions that they aren’t sick. Those people get insurance benefits, disability and some sort of treatment. They also know that lots of funding is going into researching cures and helping them. People with CFS have none of that.

    When the first drugs came out to fight HIV people would do anything to get their hands on them. Why would you expect different behaviour from suffers of different disease. It is easy to say in a blog to not take something. It is entirely a different thing to look into someone’s eyes who you think is on the verge of killing themselves due to the disease you can do nothing for and say the same thing.

  91. #91 JohnV
    June 18, 2010

    that’s a very happy face.

  92. #92 ERV
    June 18, 2010

    Kemanorel– *shrug* Honestly, crazy people have been bitching about my blog for four years. Adding this rather small group of crazy people to the list isnt really that big of a deal. I guess I have to thank Caseytits for this blasé attitude… :-S

    dt– Yeah, Ive actually talked about AZT-mitochondria here before. At high doses, it causes some embryos to abort due to mitochondrial toxicity. That research was done ages ago in mice, before we would give the drug to pregnant humans. We didnt just randomly give doses of antiretrovirals to pregnant HIV+ women BECAUSE THEY WERE DESPERATE **WAILING GNASHING OF TEETH!!!!**

    impish– That is not how drug resistance works in HIV-1 at all, and XMRVs ‘diversity’ has been a point of discussion among people who study retroviral sequence diversity. Ill hunt down a post/link for you tomorrow, just got back from DC. w00t. Sleep time. And dont give me any more of that “SEXISM!” shit in the mean time.

  93. #93 Smurfette
    June 18, 2010

    Its forums like that that make me feel so sorry for people with CFS. There are several people who have commented here, and several Ive exchanged emails with that clearly arent nuts.

    That is because they choose not to waste what little functionality they have there after being run off by the cult-like illogic. That forum is the craziest of all the CFS forums I’ve been on. It is composed of ~100 active posters out of ~10 million people in the world who have CFS.

    I don’t think they have hypochondria and I don’t think any psychogenic fatigue could compare to the CFS fatigue. They are different types of fatigue. I have known people depressed enough to be hospitalized and that doesn’t prevent them from actually being able to use their muscles.

    Could someone explain the business with using the fact she’s in grad school as a negative? Would she be in better standing if she wasn’t in school and just had her Master’s?

    That is because quacks and pseudoscientists have MDs and PhDs. They may also have prior legitimate careers, publications in Science journals, register as an institute, and a small network of colleagues across the country and world.

    But yeah, like I said before, 99% of CFS patients do not even have a bachelors degree in biology. After doing some rough calculations, that is not an exaggeration. (~28% of the U.S. population has a bachelors degree and ~6% of those majored in biological and agricultural sciences.)

    Based on the level of their science education, they honestly cannot follow your arguments.

  94. #94 ERV
    June 18, 2010

    Smurfette– It is composed of ~100 active posters out of ~10 million people in the world who have CFS.

    Thats a fair comment. I will try to make a conscious effort to remember that.

  95. #95 Hip
    June 18, 2010

    Hi Sue

    I read your symptoms, and their psychological intensity seems very similar to the type of chronic fatigue syndrome I developed from a respiratory virus (probably an enterovirus) several years ago.

    Like you, I was also suddenly plunged from normality into living hell. Unless you have experienced this horror yourself, you can never fully appreciate just how bad it is.

    It took me many years to figure out what was causing this dire mental state. I tried many medications and supplements, including some anti-enteroviral herb, elastase inhibitors, MMP-9 inhibitors, peroxynitrite scavengers, and many of other experiments (all pretty safe, I might add), but they did not improve my unbearable mental state.

    Finally, after years of this hell, I came across a simple treatment strategy that worked remarkably well in eliminating these hellish state of mind. It turns out that the hellish mental states were underpinned by brain inflammation.

    Very often, inflammation (which is the immune system’s response to an infection) can be more disruptive the the infectious microbe itself.

    The supplements that I found were the best at treating the brain inflammation are:

    curcumin 1000 mg
    alpha lipoic acid 500 mg
    propolis 1000 mg
    holy basil 500 mg

    These are all to be taken 3 times a day. You can also add some 15 grams of colostrum to this, as this is another great help. These are all extremely safe supplements.

    Most of the above herbs are anti-inflammatory: they inhibit COX-2 inflammation, and inhibit the NF-kB activity, which can quell inflammation.

    Within a day of taking these, all that pressure in my head, all those extreme constant anxiety states, and the mild psychosis that extreme anxiety can precipitate, more or less completely disappeared. I still of course have CFS: fatigue, memory problems, etc, but this are almost blissful in comparison to the dire mental state caused by this high inflammation of the brain.

    So I hope you read this, and try out these suggestions. There worked miraculously for me.

    More details are on the treatments page of my web site:

    http://chronicsorethroat.wordpress.com/site-map/chronic-fatigue-syndrome-research-chronic-fatigue-syndrome/

    I suspect that the particular virus I caught has a strong propensity to elicit these intense mental symptoms in people. For some reason, this virus provokes a very strong inflammation response.

  96. #96 qetzal
    June 18, 2010

    Impish wrote:

    As a disease [CFS] hasn’t received funding for a few reasons. 1) More women get it.

    I’ve seen a lot of stupid comments, but that’s got to be one of the most moronic of all time.

  97. #97 Kemanorel
    June 19, 2010

    I don’t think they have hypochondria and I don’t think any psychogenic fatigue could compare to the CFS fatigue. They are different types of fatigue.

    I didn’t mean to imply I thought they were the same, or anything like that… merely that one exacerbates the other.

  98. #98 Hip
    June 19, 2010

    Hi Sue

    I read your symptoms, and their psychological intensity seems very similar to the type of chronic fatigue syndrome I developed from a respiratory virus (probably an enterovirus) several years ago.

    Like you, I was also suddenly plunged from normality into living hell. Unless you have experienced this horror yourself, you can never fully appreciate just how bad it is.

    It took me many years to figure out what was causing this dire mental state. I tried many medications and supplements, including some anti-enteroviral herb, elastase inhibitors, MMP-9 inhibitors, peroxynitrite scavengers, and many of other experiments (all pretty safe, I might add), but they did not improve my unbearable mental state.

    Finally, after years of this hell, I came across a simple treatment strategy that worked remarkably well in eliminating these hellish state of mind. It turns out that the hellish mental states were underpinned by brain inflammation.

    Very often, inflammation (which is the immune system’s response to an infection) can be more disruptive the the infectious microbe itself.

    The supplements that I found were the best at treating the brain inflammation are:

    curcumin 1000 mg
    alpha lipoic acid 500 mg
    propolis 1000 mg
    holy basil 500 mg

    These are all to be taken 3 times a day. You can also add some 15 grams of colostrum to this, as this is another great help. These are all extremely safe supplements.

    Most of the above herbs are anti-inflammatory: they inhibit COX-2 inflammation, and inhibit the NF-kB activity, which can quell inflammation.

    Within a day of taking these, all that pressure in my head, all those extreme constant anxiety states, and the mild psychosis that extreme anxiety can precipitate, more or less completely disappeared. I still of course have CFS: fatigue, memory problems, etc, but this are almost blissful in comparison to the dire mental state caused by this high inflammation of the brain.

    So I hope you read this, and try out these suggestions. There worked miraculously for me.

    More details are on the treatments page of my web site:

    http://chronicsorethroat.wordpress.com/site-map/chronic-fatigue-syndrome-research-chronic-fatigue-syndrome/

    I suspect that the particular virus I caught has a strong propensity to elicit these intense mental symptoms in people. For some reason, this virus provokes a very strong inflammation response.

  99. #99 Jayne
    June 19, 2010

    After reading/scanning through most of the above comments (plus the initial blog) I’ve concluded this is one of the most distasteful discussions that I have encountered on the net. The lasting impression I have of this discussion is of opposing sides exchanging insults.

    The advice in the original blog about the risk of developing resistance to antiretroviral drugs from imprudent use of those drugs is enlightening and it is a worthy blog topic. Also, warnings of the toxicity of antiretroviral drugs is in need of wide dissemination, especially now we have a subset of ME/CFS patients that is desperate to believe that XMRV will be found to be the cause of their suffering (so that finally they have an answer; and something on which to hang their hope for a cure/treatment).

    From where things currently stand (i.e. other researchers have failed to replicate the WPI findings*) it seems unlikely that (in the short-term) more than a few ME/CFS patients worldwide will have the opportunity to undertake an n =1 trial of antiretroviral drugs.
    (* Selection of which ME/CFS subjects to test for the presence of XMRV seems to have been abysmal in at least one study, so at least one study hasn’t necessarily added much to current knowledge). http://www.forums.aboutmecfs.org/content.php?88-Scandal-in

    ME/CFS is not a single disease entity. The various diagnostic criteria are so disparate that it is impossible to determine whether one person’s ME/CFS has any resemblance to the next person’s. Self-diagnosis is rife. There surely are imposters and psychiatric cases within the ME/CFS category, but there also are many seriously ill individuals, who suffer from an enigmatic organic disorder.
    In a review of fatigue in neurological disorders (Abhijit Chaudhuri & Peter O Behan, The Lancet 2004; 363: 978-988.) is the conclusion “Many doctors prefer to invoke a psychiatric explanation for fatigue when patients’ symptoms do not fit a typical medical or neurological diagnostic category. …… As in other complex medical disorders, only open minded people – who are willing to consider observations and explanations at many different levels – are likely to succeed in offering the right solutions.”
    http://www.cfids-cab.org/cfs-inform/Fatigue/chaudhuri.behan04.pdf

    Given the few individuals who currently will have an opportunity to undertake a trial of antiretroviral treatment for ME/CFS, I puzzle as to why (and how) these few individuals will add much (if anything) to the development of resistance to these drugs. Won’t this small number of people be insignificant when compared to the rising numbers (especially in Africa and Asia) who should (legitimately) receive antiretroviral treatment for HIV infection? (The fact that many poor people in those countries currently do not have access to these drugs is a matter that is of great concern to the WHO and other care organisations.)
    One of the routes to bacterial resistance to antibiotics is failure to complete a full course of treatment when prescribed. If failure to take antiretroviral drugs as prescribed likewise contributes to development of viral resistance to antiretroviral drugs, then one assumes the widescale provision of antiretroviral drugs through Africa, Asia and other poor communities will be more problematic for development of drug resistance than will a few compliant ME/CFS patients on a trial of the drugs.

    Sue advises that her treatment is under the supervision of an infectious diseases specialist. One hopes that her specialist has prescribed Sue’s trial of antiretroviral treatment after balancing the possible benefits against the known toxicity of the drugs. Too often I observe medicos treat with minimal attention to detail. Medicine seems to have become just another production-line process; churn the patients through as quickly as possible. Recently I heard discussion about how the next stage of the AIDS epidemic has arrived; what to do with all the antiretroviral-treated people who are presenting at around age 55 with age-related disorders that do not develop in the general population until around 20 or more years later. An unexpected outcome of antiretroviral-treated HIV infection and/or antiretroviral drugs is that it ages people more rapidly.
    http://www.abc.net.au/rn/allinthemind/stories/2010/2896016.htm
    Dr Edwina Wright, 
Infectious Diseases Specialist,
 Alfred Hospital 
Chair, Asia-Pacific NeuroAIDS Consortium, 
Burnet Institute,
 Victoria 
Australia, “… there’s some evidence coming out recently suggesting that potentially anti-retrovirals may … be detrimental to brain function.”

    The number of ludicrous “cures” (and explanations posited for how those “cures” work) promoted on ME/CFS discussion sites saddens me. Some of the regular contributors to those sites surely do not have a severely debilitating organic condition (unless they have conned someone else to undertake all the day-to-day activities required just to survive ~ shopping, cooking, cleaning etc.). In spite of their profession of severe disability they seem to spend a remarkable amount of energy undertaking (and promoting online) one daft “cure” after another. Unfortunately, there are many seriously ill individuals who are damaged by this fanatical behaviour because of the hostile reaction it elicits in what should be an open minded and caring medical community.

    These “wannabe famous” fanatics are like the tip of the iceberg. Most genuine ME/CFS sufferers are invisible and are deserving of compassion from a medical community that too easily derides them.

  100. #100 KevinS
    June 19, 2010

    I think one point of confusion here is the fact that you can’t just dabble in HAART. This is not the type of virus you are going to clear (get rid of). It has physically become a part of the infected patient.If you go on the drugs and then go off the virus comes back, sometimes better than ever. ERV is pointing out that long term use of these drugs have major health consequences and are traditionally reserved for people given a death sentence (HIV+ diagnosis). Although CFS is a horrible disease and we can argue about whether death is a more attractive option than life one fact remains, Sue has a dependent, death is not an option. Many CFS sufferers have loved ones to live for. Now, having CFS with drug related complications sounds like a nightmare to me.

    Scientists are trying to figure out what XMRV’s relation to CFS is. I have recently sat through a number of talks about it. The federal government is investing in resources to developing standardized tests so that major studies can go forward. More money has gone to studying this virus. Unfortunately for many of you this is too late/or too slow.

    Looking at all of this positively, at least XMRV is bringing renewed interest into CFS, especially the viral hypothesis. Large trials will standardize diagnoses ect. However, the CFS community should be careful to jump on the XMRV link and the WPI style of science too early. If no link is established many people will be totally crushed or not believe it, some maybe permanently harmed from premature drug use. More importantly it should be the CFS community that calls for restraint and good science. I am only a PhD student like ERV (which seems to discredit me among some here), but I can tell you some of the comments from Judy and the WPI are troubling. When a big name player starts making sensational claims many scientists tend to question their work. Many non-scientists may not realize this, but her bold claims and choices of venues for talks are undermining not only her work but the XMRV-CFS work as a whole (since they have the only positive correlation). It is starting to become poisoned ground where grad students (who do most of the work and really want to be able to graduate one day) will not go. Knowing what I know today vs. the day the science paper came out when I pitched an XMRV side project to my PI, I would not go there right now. If many of you are truly serious about finding a scientific connection between XMRV and CFS (or another pathogen) you should lobby the WPI to do more research, prove their claims 100% and worry less about PR.