Abbie Smith is a graduate student studying the molecular and biochemical evolution of HIV within patients and within populations. She also studies epigenetic control of ERVs.
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.
Medicine & Health
Comments
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.
Posted by: sue | June 14, 2010 2:37 PM
Posted by: ERV | June 14, 2010 2:44 PM
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...
Posted by: curious | June 14, 2010 2:45 PM
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?
Posted by: Joshua | June 14, 2010 2:58 PM
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.
Posted by: Mu | June 14, 2010 3:02 PM
Posted by: Tim | June 14, 2010 3:06 PM
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
Posted by: sue | June 14, 2010 3:07 PM
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.
Posted by: Prometheus | June 14, 2010 3:08 PM
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.
Posted by: curious | June 14, 2010 3:08 PM
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
Posted by: sue | June 14, 2010 3:11 PM
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.
Posted by: curious | June 14, 2010 3:11 PM
Sound like we need to push acupuncture and homoeopathy for CFS, Chronic Lyme and the rest of the made up illnesses.
Posted by: Sili | June 14, 2010 3:16 PM
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.
Posted by: sue | June 14, 2010 3:23 PM
“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.
Posted by: Prometheus | June 14, 2010 4:10 PM
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.
Posted by: Optimus Primate | June 14, 2010 4:57 PM
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.
Posted by: gf1 | June 14, 2010 5:43 PM
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!"
Posted by: KAL | June 14, 2010 7:29 PM
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.
Posted by: munich | June 14, 2010 7:35 PM
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.
Posted by: ERV | June 14, 2010 8:10 PM
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.
Posted by: Munich | June 14, 2010 8:16 PM
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
Posted by: sue | June 14, 2010 9:06 PM
Posted by: ERV | June 14, 2010 9:10 PM
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
Posted by: Wendy | June 14, 2010 9:31 PM
Yes, ERV! Learn how to use PubMed!!! Do you even know what a pipette is?
Posted by: Brian | June 14, 2010 10:18 PM
Name the five amino acids!
Posted by: Brian (a different Brian) | June 15, 2010 12:30 AM
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.
Posted by: ERV | June 15, 2010 7:23 AM
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?
Posted by: Smurfette | June 15, 2010 7:50 AM
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.
Posted by: Andrew | June 15, 2010 8:31 AM
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!
Posted by: Prometheus | June 15, 2010 9:24 AM
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
Posted by: sharon stapleton | June 15, 2010 10:15 AM
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..
Posted by: Prometheus | June 15, 2010 10:26 AM
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!
Posted by: Kemanorel | June 15, 2010 10:48 AM
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.
Posted by: Stephen Wells | June 15, 2010 10:54 AM
Don't mind me, I'm just here for the lulz. Mmmm, lulz.
So sweet
and so cold.
Posted by: stogoe | June 15, 2010 11:13 AM
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.
Posted by: Prometheus | June 15, 2010 11:28 AM
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
Posted by: sue | June 15, 2010 12:05 PM
Nice poem
Posted by: munich | June 15, 2010 12:20 PM
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
Posted by: SomeGuyWanderingBy | June 15, 2010 12:35 PM
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.
Posted by: D. C. Sessions | June 15, 2010 2:09 PM
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.
Posted by: Sleette | June 15, 2010 3:32 PM
Posted by: Rrr | June 15, 2010 4:26 PM
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?
Posted by: D. C. Sessions | June 15, 2010 4:30 PM
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?
Posted by: D. C. Sessions | June 15, 2010 4:55 PM
Posted by: Rrr | June 15, 2010 5:06 PM
"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.
Posted by: Prometheus | June 15, 2010 5:56 PM
Sharon wrote:
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.
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.
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.
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.
Posted by: Jason | June 15, 2010 5:58 PM
Its horrifying.
This is all fucking horrifying.
So is having CFS
Posted by: Ernie | June 15, 2010 6:55 PM
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.
Posted by: Smurfette | June 15, 2010 9:33 PM
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?
Posted by: Kemanorel | June 15, 2010 10:03 PM
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.
Posted by: sue | June 15, 2010 10:52 PM
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
Posted by: Smurfette | June 16, 2010 12:19 AM
@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
Posted by: R2 | June 16, 2010 12:19 AM
Anyone ever hear of something called MRSA (multiply resistant staph aureus)? Developed because of indiscriminate use of antibiotics for things like viral infections.
Posted by: rnb | June 16, 2010 12:46 AM
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.
Posted by: fnxtr | June 16, 2010 3:08 AM
@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.
Posted by: Stephen Wells | June 16, 2010 5:21 AM
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.
Posted by: D | June 16, 2010 7:44 AM
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...
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:
Let's just hope Sue and others of her ilk aren't cultivating another super bug.
Posted by: Kemanorel | June 16, 2010 9:16 AM
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.
Posted by: jaranath | June 16, 2010 10:45 AM
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
Posted by: dt | June 16, 2010 1:11 PM
Nnnnooo, there's nothing going on!
http://www.youtube.com/watch?v=l6tAW7bbnAU&feature=youtube_gdata
Posted by: jaranath | June 16, 2010 2:35 PM
"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?
Posted by: Prometheus | June 16, 2010 5:23 PM
Toxic Avenger III, anyone?
Posted by: fnxtr | June 16, 2010 7:14 PM
"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?
Posted by: Dave | June 16, 2010 9:17 PM
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)
Posted by: Smurfette | June 16, 2010 9:20 PM
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.
Posted by: Smut Clyde | June 16, 2010 9:43 PM
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?
Posted by: EoRaptor | June 16, 2010 10:09 PM
@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.
Posted by: EoRaptor | June 16, 2010 10:24 PM
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
Posted by: qetzal | June 16, 2010 10:25 PM
The smog monster was also called Hedorah.
Posted by: spurge | June 17, 2010 10:11 AM
@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!
Posted by: qetzal | June 17, 2010 1:58 PM
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.
Posted by: spurge | June 17, 2010 2:35 PM
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.
Posted by: Vicki | June 17, 2010 3:03 PM
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
Posted by: sue | June 17, 2010 5:42 PM
Things are getting nasty on PR, with veiled future threats:
http://www.forums.aboutmecfs.org/showthread.php?5644-Anti-XMRV-Blog-New-post&p=93213&viewfull=1#post93213
Posted by: dt | June 17, 2010 6:30 PM
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)
Posted by: Smurfette | June 17, 2010 7:50 PM
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.
Posted by: Kemanorel | June 17, 2010 8:56 PM
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.
Posted by: ERV | June 18, 2010 9:15 AM
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
Posted by: Prometheus | June 18, 2010 10:32 AM
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:
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:
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.
Posted by: Kemanorel | June 18, 2010 10:47 AM
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.
Posted by: Kemanorel | June 18, 2010 10:59 AM
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
Posted by: ERV | June 18, 2010 11:21 AM
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.
I postulate "grasping at straws," but that's just me. :-)
Not to mention the continual misrepresentation of your argument.
Posted by: Kemanorel | June 18, 2010 12:15 PM
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.
Posted by: dt | June 18, 2010 12:25 PM
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.
Posted by: Impish | June 18, 2010 12:57 PM
that's a very happy face.
Posted by: JohnV | June 18, 2010 1:56 PM
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.
Posted by: ERV | June 18, 2010 9:36 PM
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.
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.
Posted by: Smurfette | June 18, 2010 9:38 PM
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.
Posted by: ERV | June 18, 2010 9:47 PM
Impish wrote:
I've seen a lot of stupid comments, but that's got to be one of the most moronic of all time.
Posted by: qetzal | June 18, 2010 10:42 PM
I didn't mean to imply I thought they were the same, or anything like that... merely that one exacerbates the other.
Posted by: Kemanorel | June 19, 2010 12:32 AM
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.
Posted by: Jayne | June 19, 2010 2:23 AM
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.
Posted by: KevinS | June 19, 2010 11:17 AM
Kevin S.
You are absolutely right about the WPI and their PR efforts. They are terrible. They have made a whole series of poor PR moves. Please please study the virus and/or CFS. What people with this condition need and have needed for a LONG time is scientists willing to look into what is causing this. From a career perspective you at least will be going into an area that doesn't have a ton of other people in it rather than following the crowd. Easier to find low hanging fruit in an orchard that doesn't have dozens of others running around looking as well.
Jayne, you are right that people with CFS are looking for a cure where there isn't one. They are desperate.
This is a historically ignored patient population. Millions of people have this disease and the funding for study of it has been lacking. At one point funding for the disease was actually redirected elsewhere.
For those of us who have been dealing or supporting those who have this disease for a long time we have also gone through many rounds of "we know what it is". All of this has made many many people who have CFS and their support system DEEPLY suspicious of doctors and scientists.
WPI is the first organization that seems to be firmly on the side of people with CFS. This has caused patients to rally around it (for better or worse).
While CFS isn't directly a death sentence year after year of being constantly ill takes it out of the patients until the point where they don't want to continue. Imagine having the flu. Now imagine having it continuously for 20 years. Now picture having people (including doctors) relatively frequently tell you its all in your head. Now imagine knowing there is no cure and almost no money going into research for a cure. Sound like fun? The leading cause of death in CFS patients is suicide.
Posted by: Impish | June 19, 2010 6:41 PM
To back up my comments and provide some context for ERV and those who are posting about CFS. How about turning some energy towards how the system could have let a clearly ill fairly large patient group like this down for SO SO long.
The present study found that approximately 20% of the sample had died from cancer, and this is of theoretical interest given the immune abnormalities reported in patients. People with CFS appear to have two basic problems with immune function: immune activitation as demonstrated by elevations
of activated T lymphocytes, including cytotoxic T cells and elevations of circulating cytokines; and poor cellular function, with low natural killer cell cytotoxicity and frequent immunoglobulin deficiencies (most often IgG1
and IgG3; Patarca-Montero, Mark, Fletcher, & Klimas, 2000). For example, Antoni, Fletcher, Weiss, Maher, Siegel, and Klimas, (2003) found that patients with low natural killer cell activity (NKCA) and a state of overactivation of
lymphocyte subsets (e.g., CD2 +CD26+% activation markers) had the greatest fatigue intensity and greatest fatigue-related impairments in emotional and mental functioning. It seems that the Th2 cytokines are dominant over the
Th1 cytokines. In addition, Suhadolnik and colleagues (1997) found a novel low-molecular-weight (37 kDa) binding protein in a subset of individuals with CFS who are severely disabled by their disease. A European team (De Meirleir et al., 2000) has also found increased levels of 80 kDa and 37
kDa RNase L in patients with CFS. The ratio of this 37 kDa protein to the normal 80 kDa protein was high in 72% of patients with CFS but only in 1% of the healthy controls and in none of the depression and fibromyalgia control patients.
Another 20% of patients died of suicide, possibly due to the losses that patients with this illness experience from family, friends, coworkers, and health care workers (Friedberg & Jason, 1998). Anderson and Ferrans
(1997) found that 77% of individuals with CFS reported past negative experiences with health care providers, and 35% indicated that they no longer sought treatment because of minimal benefits. David, Wessely, and Pelosi (1991) found that 57% of respondents were treated badly or very
badly by their doctors. Green, Romei, and Natelson (1999) also found that 95% of individuals seeking medical treatment for CFS reported feelings of estrangement, and 70% believed that others wrongly attributed their CFS symptoms to psychological causes. Asbring and Narvanen (2003) found
that physicians regarded the illness as less serious than the patients. The physicians characterized the patients with CFS and fibromyalgia as illness focused, demanding, and medicalizing. Twemlow, Bradshaw, Coyne, and Lerma (1997) found that 66% of individuals with CFS stated that they were
made worse by their doctors’ care. Clearly, individuals who are extremely sick with an illness will feel even more alienated and demoralized if those 622 L. A. Jason et al.
who are responsible for helping them are insensitive to their needs. Certainly, all of these factors, including demoralization, estrangement from the medical establishment, and unsympathetic responses may cause some individuals to
develop depression as well. A sense of hopelessness concerning the illness and comorbid depression may also increase the risk for developing suicidal
thoughts or behavior. The fact that more women were reported to have died than men was not unexpected, given that there is a higher percentage of women with CFS than men.
Posted by: Impish | June 19, 2010 7:06 PM
hmmm..
I am one of the crazy hypocondriacs from the CFS forum you refer to - but not the crazyiest - some have left as the forum wasnt crazy enough for them (about XMRV)
unfortunately despite being refered to as a crazy hypocondriac I have to concur with most of the blog and comments made by nonCFS'ers here - at least the basic points
XMRV isnt proven to be causative of CFS
the uncontrolled use of ARV's is a bad thing
a lot of crazy (inventive but crazy) things are being tried for CFS based on nothing that I can see apart from suposition - using large amounts of money shotgun fashion
far too many just want a reason, a cause, any cause which means we're not seen as mad malingerers - XMRV seems to be the flavour of the month - any disent seems to be veiwed as treason by large parts of the membership - a crushing disappointment seems likely
of course this desire isnt helped by all the touchy feely stuff quite a few of the membership seem to be into - IMO it just makes pwCFS look a little insane - maybe thats just me
so what am I saying?
as a member of the aforementioned clan of crazy people I suspect I am closer to the OP's position than some in that clan - I may not like it - but nice simple solutions have a tendency not to be correct - and this tendence increases the more they are desired - so no ARV's for me for a while
Posted by: DaveC | June 19, 2010 9:09 PM
but nice simple solutions have a tendency not to be correct
Which also means they are sometimes correct. You cannot dismiss the possibility a priori, just because it may not be true in any particular case, or even in most cases. It is still true sometimes, and will always be so.
Posted by: EliBot | June 19, 2010 11:58 PM
@Impish
The telephone game is in progress.... They didn't die, and whether any and how many had cancer has different answers between what the WPI says and what shows up in certain media articles and presentations.
http://www.google.com/search?q=http://online.wsj.com/article/SB125501227713473525.html
(via Google for subscriber access)
http://www.facebook.com/note.php?note_id=364365805538
http://www.hhs.gov/advcomcfs/meetings/presentations/xmrv_cfs.html (Part 5, Slide 1)
(Check out the choice words in the comments by one-who-cannot-be-named. The name on that FB account has since been changed to her mother.)
http://www.facebook.com/notes/whittemore-peterson-institute/xmrv-testing-facts/377139018025
Posted by: Smurfette | June 20, 2010 1:05 AM
Note: EliBot... this isn't directed at you personally. Far too many people have this idea that creating a new drug or finding a cure for this is easy or will be easy or CAN be easy... its not and it won't be.
Drug discovery is not easy. Not anymore. We are VERY unlikely to find a simple solution to anything. The fact that a cause hasn't been found yet, suggests that CFS isn't just a simple system, so a simple drug probably isn't going to do the trick.
There's also really no simple drugs to be found anymore. There's a reason only about 4 novel drugs get produced each year and about 4 improvements on previous drugs. And this is despite the continuing improvement in medical technology and biological databases.
Drug discovery and development isn't a simple process like it used to be where it was literally serendipity that found the drugs like aspirin, which is simple, occurs in nature, works without seriously harmful side effects, etc. Even creating the simplest new drug would take a substantial investment.
Now the process starts by identifying what proteins actually cause the disease. After that you synthesize a compound that will react with it, then you optimize this for specificity with the protein. That's the prefect world.
Chances are, your protein will be part of a family and your compound will react with others which cause other things to break (which is the cause of side-effects) and these will be too severe and the drug will fail due to toxicity. Or, the only thing that can be synthesized to react with the protein is a molecule too big to get into the cell to do anything. Or, it doesn't have enough specificity. Or, it doesn't have an association constant (chance to bind with the protein) high enough to out react the protein and stop the disease. Or, nothing can by synthesized to keep with the "rule-of-five" which gauges the potential to have poor absorption or permeation...
The (SIMPLIFIED) process now goes like this:
1.) Find a target
2.) Find a compound that reacts with it
3.) Optimize the compound
4.) Clinical trials phase I
5.) Clinical trials phase II
6.) Clinical trials phase III
7.) Market
8.) PROFIT
There's no magic ???? in there. This is a set standard.
CFS and XMRV does even have STEP 1, and they've skipped to step 6 for (very poor) clinical trial with unusable, inconclusive results.
Discovery to market takes 2-12 years, and only ONE in 10,000 ever makes it to market.
If you want simple here's what you do:
1.) Go pray and hope all the symptoms are psychogenic
2.) Hold your breath
3.) Black out
4.) Have a religious experience
5.) ????
6.) Symptoms are gone
7.) PROFIT (become another Peter Popoff)
So you know I'm no talking out of my ass...
References (sorry, I'm not doing an official format):
-Ross Tonkens, MD. An Overview of the Drug Development Process. The Physician Executive. 2005
-Lindsay, Mark. Target discover. Nature Reviews. 2003
-Ratti, Emiliangelo & Trist, David. Continuing evolution of the drug discovery process in the pharmaceutical industry. Pure Appl. Chem. 2001
-Hopkins, Andrew & Groom, Colin. The Druggable Genome. Nature reviews. 2002.
-Kramer, Richard & Cohen, Dalia. Functional Genomics to New Drug Targets. Nature reviews. 2004.
Posted by: Kemanorel | June 20, 2010 2:20 AM
I'm not saying that XMRV isnt the cause of ME/CFS
I'm saying that nothing other than SOME circumstantial evidence links it to ME/CFS
I'm also saying that based on this a significant and vocal proportion of the aforementioned forum have decided that ME/CFS is caused by XMRV (in one way or another) and have further decided that anyone who dares to urge caution in behaviour or treatment on this basis is either a traitor, a stooge or doesnt have ME/CFS
to give an example of the limitations of this way of thinking
everything in my personal experience tells me the earth is flat (with the odd lump) - when I look at it it's flatish - basic cartesian geometry works - so maths backs up the fact it's flat - in toerms of normal measurement that I can do the earth behaves as if it's flat - so ergo it must be flat - the simplest and most self evident solution backed up by as many personal experiments as I can do is correct?
but experiments done by groups of people show that the earth is not flat - its just about as far from flat as you can get - conclusion - if in simple easily tested things the self evident conclusion is often wrong
add to that the effect of years of desperation, of having tried tens of apparently scientific protocols all "designed" to try and fix hypothesised problems with metabolism etc. of furth despair once the placebo effect (and the money) wears off and you end up with what appears from the point of view of an onlooker as a group of radicalised raving nut jobs clutching at straws
THIS DOES NOT HELP US!!! IT DOESNT HELP RESEARCH!!!
I've had ME for a few years now - decades even - I've even tried a lot of the protocols - my experience tells me ME/CFS isnt simple to fix - which leads me to the conclusion that a simple explaination probably wont cut it - like anyone else I could be wrong - I may even hope I am - but it's not just my experience I'm basing this on - it's the experience of pretty much everyone apart from a group of desperate and radicalised pwCFS
I also think it would be a good idea to drop the conspiracy theory culture - for one thing a group of people acting in their own self interests ISNT a conspiracy - it's human nature - it's another thing that makes us look crazy AND IT DOESNT HELP!!!
so please, if you really want ME/CFS sorted out, and you believe XMRV is the cause if not the solution, then stop attacking everyone, stop with the conspiracy theories, just stop behaving like spoilt children
because, believe it or not, I'd quite like to be rid of ME/CFS as well - and those of you who I describe above are HURTING MY CHANCES because no one wants to deal with you
sorry but thats the way I see it
Posted by: DaveC | June 20, 2010 7:27 AM
in simpler terms
if people want to diminish the influence of the psyche lobby, if they want more money spending on an organic cause and treament of ME/CFS, in short if they want acknowledgement and recognition of a devistating organic disease - then maybe they should stop acting like they have major mental health issues - because it literally frightens away the money and the researchers
tho I hesitate to say it this includes our esteamed friends in the research community - not following basic conventions may be fine if your right and you can prove it rapidly - but if you cant get backup more or less immediately it doesnt matter if your right - if you behave in a way that loses you support then there is no followup - your right idea is rejected, you get hurled into obscurity - and, even tho you were right, I DONT GET BETTER because you couldnt manage to behave in an appropriate/accepted fashion and drove away support
and then we have another 20 years in the void - how many more lives have to be ruined - how many more people have to die before people understand that not only do you have to be right, you also need to have a plan, and you also need to keep your damn mouth shut until you can back up what your saying
or we all lose
Posted by: DaveC | June 20, 2010 8:01 AM
My wife has been sick for 3 years with CFS symptoms: Fatigue,Brain fog, weakness...
and while we most likely not go on the current antivirals, we are hoping the FDA approves Ampligen wich HAS shown to be effective treating CFS in Canada and Norway(?).
While I agree with your premise that the medical establishment is not really clued into what is going on I will point out that they have NO problems putting CFS sufferers on one antidepresent after another at often at higher and higher doses. These drug too have side effects including suicidal thoughts. Are you saying that one misdiagnosis and treatment is better than another? My wife KNOWS what she feels and if something is helping or hurting her I would believe her in a heartbeat over some doctor's "objective" test results.
Posted by: Edugreat | June 20, 2010 9:11 PM
Not unless your wife KNOWS that what she's feeling is a real effect and not a placebo.
And WTF is with the scare quotes around "objective?"
YOU HAVE TO HAVE DOUBLE BLIND STUDIES. You also have to have some measure to go by... lower viral load for example. That is how you're objective. Hell, I'd even ignore a measure if there were a double blind where it is universal that those that get the ARV had symptoms reportedly much less than those that just get a placebo.
What don't people get about that?
Posted by: Kemanorel | June 21, 2010 1:45 AM
Kemanorel - You don't have to go through all of those steps if there is a drug that has gone through those steps and can be shown to effect the new condition/virus/whatever. The example I am most aware of is Celcept being now used for Lupus.
DaveC - I agree with what you have to say for the most part. Acting like loons in not going to get anyone to help you. The main reason I responded on here wasn't really to disagree with the idea that Anti-Virals aren't a bad idea but more with the other posters various ignorant comments.
I especially liked Jayne diagnosing people remotedly as having hypercondria which (as shown by the study I posted) is exactly why people with CFS have been forced into pseudo-science. The best outcome for suffers of CFS in the very short term would be some sort of agreed upon biomarker and a test to go with it. At that point the population could be agreed upon, the number of people who have it publically revealed and then maybe the disease would get funding for research related to the number of people who have it rather than receiving a similar funding priority as toe fungus.
The one terrible "replication" paper posted by the BMJ even took blood from samples originally collected for a study in the Journal of Psychosomatic research which gives you an idea of how the research community at large feels about the disease.
Posted by: Impish | June 21, 2010 4:37 PM
One more and then I am going to be quiet...
Since everyone here enjoys a good scientific smack down:
http://www.biomedcentral.com/content/pdf/1741-7015-8-35.pdf
Here are my two fav bits.
Harvey and Wessely [1] outline that even fatigue associated with ‘apparent
medical causes’, such as cancer and HIV infection, is more closely associated
with behavioural and psychological factors than with the severity of the
underlying pathophysiology. However, in patients with autoimmune disorders,
‘fatigue’ can largely be explained by activated IO&NS pathways (for example,
increased interleukin 1 (IL-1) [45]). In cancer patients, there is evidence that
cytokines (for example, IL-6) play a key role in the fatigue [46]. HIV infection is
characterised by fatigue accompanied by clinical signs of inflammation [47],
an impaired quality of life that is related to immune activation [48], and a
dysfunctional carnitine-dependent energy production [49].
This one is great as well. Nice to know that there is no point in looking for the underlying causes of people with fatigue because it is all in their head:
Based on their model, Harvey and Wessely [1] recommend clinicians to avoid
spending too much time chasing ‘rare or unlikely diagnoses’, or in their own
words: ‘not to spend too much time looking for zebras among the horses’, and
they propose to limit the organic investigations to a small set of blood tests.
Posted by: Impish | June 21, 2010 9:37 PM
One more and then I am going to be quiet...
Since everyone here enjoys a good scientific smack down:
http://www.biomedcentral.com/content/pdf/1741-7015-8-35.pdf
Here are my two fav bits.
Harvey and Wessely [1] outline that even fatigue associated with ‘apparent
medical causes’, such as cancer and HIV infection, is more closely associated
with behavioural and psychological factors than with the severity of the
underlying pathophysiology. However, in patients with autoimmune disorders,
‘fatigue’ can largely be explained by activated IO&NS pathways (for example,
increased interleukin 1 (IL-1) [45]). In cancer patients, there is evidence that
cytokines (for example, IL-6) play a key role in the fatigue [46]. HIV infection is
characterised by fatigue accompanied by clinical signs of inflammation [47],
an impaired quality of life that is related to immune activation [48], and a
dysfunctional carnitine-dependent energy production [49].
This one is great as well. Nice to know that there is no point in looking for the underlying causes of people with fatigue because it is all in their head:
Based on their model, Harvey and Wessely [1] recommend clinicians to avoid
spending too much time chasing ‘rare or unlikely diagnoses’, or in their own
words: ‘not to spend too much time looking for zebras among the horses’, and
they propose to limit the organic investigations to a small set of blood tests.
Posted by: Impish | June 21, 2010 9:37 PM
I understand that, but you still need double blind studies. You don't have them.
What I said there was because someone said that the solution might be simple... it's not.
Do one and/or the other: double blind study or the process for the new drug. I don't care which you do, but right now NEITHER is being done for CFS.
Posted by: Kemanorel | June 22, 2010 10:11 AM
I didn’t intend readers of my earlier comment to interpret it as a suggestion that I think some people are hypochondriacs. I think there is a good bit of hypochondriasis in all of us (I gather it is the norm for new medical students to think they have a number of the ailments described in their textbooks when they begin their studies).
I would never criticise people who feel unwell for searching for reason/s why they feel that way. Some disorders induce apathy (e.g. depression) or a state of insouciance (e.g. MS), which limits a person’s ability to try to help themself. The prolific online postings of some ME/CFS people seem to rule out apathy or insouciance; they seem highly motivated &/or focussed on helping themselves. It’s the very public (and potentially damaging) way some go about it that concerns me. There are individuals who post prolifically on several sites and at least one claims to have a primary ailment that varies according to which forum they are on (from ALS to ME/CFS to ….). They claim a particular “cure” has transformed their life and encourage others to copy their method. Worryingly, a number of people blindly follow the “guru”, sometimes counselled by guru + other followers to persist in spite of negative effects. Some of the promoted “cures” seem to be relatively harmless (except perhaps on the hip pocket), while others seem downright dangerous. One could say caveat emptor applies. However, there is collateral damage.
In both the public’s and medical community’s mind ME/CFS is a vague condition (essentially it is a nomenclature for fatiguing conditions of uncertain pathology). If asked whether they knew of a person who has suffered from ME/CFS I suspect most of the public would name various high profile sports people (in Australia, most would probably name former AFL footballer Alastair Lynch). Chaudhuri & Behan* identify “overtrained athlete syndrome” as “sudden and profound chronic fatigue in physically active and highly motivated sportspeople” and suggest that this condition is affected by hypothalamic and related neuroendocrine changes. So the fatiguing condition that some sportspeople come down with ideally shouldn’t be called ME/CFS. (* link to full article is in my earlier comment.)
Unbeknown to the general public and many medicos, the worst ME/CFS cases endure a wretched life (or die). For reasons that I think deserve a psychologist’s post grad attention, in general (I acknowledge there are exceptions) the families of ME/CFS sufferers are less involved in advocating on behalf of their afflicted children than are, for example, parents of autistic children. Combining a vague medical diagnosis with limited public advocacy is a recipe for the hijacking of public/medical perception by a few highly visible cases. When these visible cases recover following a year or so of rest (e.g. many of the overtrained athletes), or promote a simplistic or implausible “cure”, the impression of ME/CFS becomes distorted in the minds of onlookers.
In reference to the need for placebo-controlled trials:
There are times where placebo isn’t involved; e.g. I gather that Viagra started out as an angina medication (in placebo-c. trials) and its effectiveness for erectile dysfunction was discovered from the feedback from VERY satisfied customers who took it to treat angina (only it wasn’t the improvement in their angina that satisfied them!). Perhaps Viagra went on to be trialled (for this new action) in more placebo-c. trials, however, the initial discovery of this action of Viagra didn’t come out of placebo-c. but from feedback.
Posted by: Jayne | June 22, 2010 11:30 AM
Impish (#103):
Posted by: qetzal | June 22, 2010 3:28 PM
http://www.mmdnewswire.com/xmrv-9040.html
Posted by: Smurfette | June 22, 2010 6:56 PM
Ack... Honestly, if this is true I can understand why they are sitting on it. If it wasn't for the oil spill I can easily imagine Fox, CNN or someone else using this to cause a panic. UNKNOWN VIRUS IN BLOOD SUPPLY. PANIC PANIC PANIC...
Posted by: Impish | June 22, 2010 7:14 PM
http://www.mmdnewswire.com/xmrv-9040.html
HA read it and weep you stupid cunt
Posted by: sue | June 22, 2010 9:30 PM
OH THE CIVILITY!!! THE CIVILITY!!
WONT SOMEONE THINK OF THE CHILDREN???
ROFL!!!
*sigh* Sue, would you read my fucking posts? One of them? Any of them on this topic?
Posted by: ERV | June 22, 2010 9:50 PM
It still doesn't mean that it's scientifically appropriate to prescribe anti-retrovirals yet outside of a clinical trial and for someone who is negative for XMRV.
Posted by: Smurfette | June 22, 2010 11:32 PM
First, please tell me that you are not seriously trying to say that the symptoms of CFS can be measure as objectively without a placebo as a medication that can cause an erection to last for 4 hours?
Secondly, it doesn't matter when the other effects are discovered by accident. There was very strong objective evidence that viagra worked for ED. They were then put into trial to prove it objectively, and were subsequently run through the proper double-blind, placebo-controlled trials before being allowed on the market by the FDA for the purpose of ED.
There's no evidence to suggest that ARVs will help CFS like there was evidence that viagra would work for ED (in particular as I've noted before, having a target that the drug will effect. They knew that viagra would effect PDE5, and help with PAH. They just didn't expect the high potency in the PDE5 would effect cGMP as much as it did in the corpus cavernosum in the initial studies, and at low doses it helps with PAH, but doesn't help with erections).
If you had a patient with both HIV and CFS and was taking ARV for the HIV and subsequently reduced CFS symptoms, THEN you might have grounds for a trial for CFS. ARVs for CFS is just shooting blindly in a closed space because you probably aren't going to hit a target and you're likely to get a ricochet and hurt yourself (i.e. ARVs can have serious, permanent side effects).
Posted by: Kemanorel | June 23, 2010 1:51 AM
ROFL.
First, the actual findings haven't been published yet, so I wouldn't go and claim victory yet.
Second, see post #113.
Third, you still have to explain the cause of CFS in people who are XMRV negative. Are you just going to say, "Hey, I'm cured, fuck the 1/3 of you people with CFS and not XMRV. Just go kill yourselves?"
Posted by: Kemanorel | June 23, 2010 2:03 AM
i didnt realize that you are at the U of Oklahoma. LMAO. i guess i shouldnt have taken you seriously to begin with. my apologies.
sue
Posted by: sue | June 23, 2010 5:50 AM
I think I'll wait for the actual findings of the paper that Dr Alter is supposedly writing before I comment about the XMRV/blood issue. Not that I'm doubting the article, but reading a little more about the reporting group ("ORTHO is a Dutch magazine for health professionals focusing on nutrition and dietary supplements.") makes me wonder if there might not be a little CAM bias there.
Posted by: Dawn | June 23, 2010 7:49 AM
Well... according to US News, the University of Oklahoma ranks 100 in Biological Sciences graduate programs. The University of Nevada at Reno which is associated with WPI and where Lombardi got his PhD ranks 181. LMAO? George Washington University where Mikovits got her PhD ranks 92. L92%MAO?
http://grad-schools.usnews.rankingsandreviews.com/best-graduate-schools/top-biological-sciences-programs/rankings
Where did you get your PhD? I'll settle for where did you get your BS in Biological Sciences. Or AP Biology score.
Posted by: Smurfette | June 23, 2010 8:50 AM
Actually, thats just general bio.
In micro/immuno, we are ranked #14 ;) (Reno and George Washington arent on the list)
And The Scientist ranked us #4 in the country as 'Best Places to Work".
Im not offended, though (the Princess Who Cannot Be Named also pulled the "OKLAHOOMAH SUX!" card), I just think its funny that people with "Yuppie Flu" are acting like yuppies.
lulz>offended
Posted by: ERV | June 23, 2010 9:10 AM
I wouldn't bad mouth yuppies like that :-)
Posted by: Impish | June 23, 2010 10:08 AM
Sue@#116
"....didnt realize that you are at the U of Oklahoma. LMAO."
Oh poor sue....stupid crazy sue.
The University of Oklahoma is where they keep the hand corrected Dialogo of Galileo.
It has the finest historical science library on the planet.
But Erv ain't in Norman....
Erv works out of a state-of-the-art facility that resembles a small science city surrounded by mega hospitals that also resemble small cities. It covers 15 blocks next to the state capitol and has a couple dozen satellite facilities scattered around the city.
There are only four of these science cities in the country that house seven different professional colleges. O.U. Health Sciences is by far the largest and best funded.
It is so large it keeps the three principle State Health Agencies on it's campus as pets.
There has been talk of a teaching (small breeder) nuclear reactor to power it like the one for the entire UT Austin campus.
The size and scope of OUHSC is so over the top that there is a proposal for the health sciences center to have its own in-house construction company instead of contractors because it has reached the point where, by the time a new part of the facility has been completed, another part will have reached obsolescence.
The only corollaries for this are the Taj Mahal, which has been under construction since 1632 and the Forbidden City which has been under construction since 1406.
BTW, their combined footprints are considerably less than OUHSC's.
Short Version:
You are a histrionic moron and you don't know what you are talking about.
What is more, you exhibit all three cluster B personality disorders including cluster A paranoia. If you are not just engaging in fabulism (which is probable) and actually have a history of drug seeking/self dosing with hazardous medications you meet the legal definition of someone who should be institutionalized pending a guardianship hearing.
Posted by: Prometheus | June 23, 2010 10:22 AM
ROFL. Even as far as general grading scales go, UO is a tier 1 school. That's the highest rating you can get...
Where would you have ERV going to grad school, Sue, if not at one of the top universities in the country?
What would you think of someone who said one of the following:
-i didnt realize that you are at Harvard.
-i didnt realize that you are at Stanford.
-i didnt realize that you are at Johns Hopkins.
-i didnt realize that you are at Cal Tech.
-i didnt realize that you are at Yale.
-i didnt realize that you are at (university)
You could put ANY university in place of that, and you'd sound like an idiot with the exception of universities like Regent (tier 4) and Liberty (tier 4) and others of that ilk.
Maybe you can answer this question for me: why is it that the ignorant and stupid always regard getting any kind of education as a bad thing? I bet you're the type of person that complains about others being elite like it's a bad thing too...
In a way, I'll thank you for the comment you made. I need someone saying stupid shit like you just did to remind myself how lucky I am to be going to graduate school.
Posted by: Kemanorel | June 23, 2010 10:30 AM
A study showed with MBA students that what school you went to had no effect on your eventual success. The only thing that seemed to matter was what school you could have gone to. If your test scores and experience were such that you could have gone to Harvard but instead went elsewhere you were as likely to succeed as someone who actually went to Harvard.
I seriously don't get the whole your school is better than mine thing. In this modern era knowledge is basically available anywhere. In my experience prof's are generally shit teachers and you end up teaching yourself anyhow. Especially science prof's since they are actually there to do research and regard their teaching as a painful chore best avoided and limited.
Posted by: Impish | June 23, 2010 12:53 PM
I read this post, but have not read all the comments, so forgive me if I am repeating anything someone already said.
First, I think its vitally important to look at all sides of any situation, and review the valid information at hand to make one's final assessment. I have no problem with someone questioning whether it is safe, at this point, to consider anti retrovirals for treatment of XMRV infection. I have a loved one who is XMRV positive, and questions it as well. She is waiting for clinical trials, even though her quality of life at this point is lower than that of an end stage AIDS patient. She is unable to stand, walk, talk or care for herself.
However, while I urge healthy skepticism, a lot of your points regarding ME/CFS don't ring true on a scientific level. Since you are unlikely to consider comments from a stranger as anything worthwhile, I instead urge you to view the following presentation by Harvard's Dr. Anthony Komaroff. It may enlighten you:
http://www.masscfids.org/videofiles/Komaroff/Komaroff.html
I do hope you will take the time to watch and listen to this lecture and truly inform yourself of how complicated this disease really is.
Also, this may seem like a minor point, but you lost all credibility for me when you referred to Dr. Mikovits as a "bartender." This was posted incorrectly somewhere, and people have erroneously assumed it true. Dr. Mikovits has stated herself that this is false. Dr. Mikovits obtained her Ph.D. in Biochemistry and Molecular Biology from George Washington University. Her doctoral research was on HIV-1 latency under the direction of Francis Ruscetti. Dr. Mikovits also did postdoctoral work on the molecular genetics of HTLV-1 at the National Cancer Institute.
People with ME/CFS are gravely ill. I personally agree with Dr. Nancy Klimas -- I'd rather have HIV.
Posted by: Siah | June 23, 2010 1:09 PM
Then I suggest she contact the New York Times to correct this error.
And ya, CFS vs AIDS, Id TOTALLY pick CFS.
Get the fuck off of my blog, asshole.
Posted by: ERV | June 23, 2010 1:47 PM
Do you have a citation for this claim?
I searched quite a bit and couldn't find anything about a study... only a few anecdotes where someone without an MBA did particularly well, or someone with an MBA did particularlly bad.
For now, let's assume that the claim is true. Do you think what is true for an MBA is the same for all degrees? Do you realize that most people here talking about ERVs, drug studies, etc. probably aren't going for an MBA?
The problem with that is two fold:
1.) Not everyone has the facts (look at AiG and evolution)
2.) It's dangerous because it makes laymen think they know as much as the experts.
Posted by: Kemanorel | June 23, 2010 1:49 PM
To reiterate my second point in my previous post:
See Siah at #124.
Posted by: Kemanorel | June 23, 2010 2:42 PM
Kemanorel@#126
"Do you think what is true for an MBA is the same for all degrees?"
Impish is talking about the Ring Knocker delusion.
People believe that you will succeed if you graduate from an Ivy League school, when in fact, since Ivy League schools only accept people with fat abilities, fat connections or fat wallets, their future success is inevitable whether they attend Harvard, Yale or Whackstubble Normal School and Tire Center.
John Jay Osborn and Scott Turow can suck my dick.
Nobody learns law or anything else at Harvard Law and EVERYBODY graduates with honors.
Ivy League graduate schools, in business, law... even medicine and engineering to some extent are under constant threat to their accreditation for grade inflation.
Buuuuut
This does not apply to graduate college research sciences which distanced themselves from the practice around the time of the GI Bill. Your prestige is based on who is willing to work with you, rather than where you are working, it is what keeps IAS and MIT going and sustains the practice of actually teaching graduate students in research sciences.
Posted by: Prometheus | June 23, 2010 4:05 PM
Yes...she was "tending bar" at a social gathering with friends. She stated in an interview that that was misconstrued -- she was never an actual bartender. You may want to do some research and not make erroneous assumptions.
As for cursing at me when I was quite polite and mostly agreed with you in terms of needing to question and look at all angles... Very unprofessional of you. I'll gladly get off your blog.
Posted by: Siah | June 23, 2010 4:16 PM
So the company she was working for went out of business and she just sat at home and watched Judge Judy all day and partied on yachts with her
patronsfriends on the weekends?I respect 'bartender' more...
And I dont care how 'polite' you are while 'envying' the destruction of an entire continent of men, women, children, and infants. You are disgusting.
Get.
Out.
Posted by: ERV | June 23, 2010 4:40 PM
Turns out Mikovits was a "Junior Commodore".
That means that she was put on scut work in rotation as a condition of new membership in a boat club and had her foot on the second rung of the status ladder.
Yea, I kind of like her more as a professional bartender than an unemployed social climbing Ventura Ca. hausfrau who fell backwards into a silver bucket of gravy with the word Whittemore stamped on the side.
Posted by: Prometheus | June 23, 2010 5:43 PM
I suspected that the University of Oklahoma was higher up in the rankings for the specialties but only the top 10 are viewable without a subscription.
As for what Siah was referring to, here is the entire quote:
http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/
Dr. Klimas was comparing having CFS to HIV (not full blown AIDS) with treatment in the U.S. today for an individual.
Based on Wikipedia... I gather that a person with HIV with treatment could live a median of 13-22 years before progressing to AIDS. (Not sure if I'm interpreting this correctly.)
"In the absence of HAART, progression from HIV infection to AIDS occurs at a median of between nine to ten years and the median survival time after developing AIDS is only 9.2 months. HAART is thought to increase survival time by between 4 and 12 years."
13-22 years is long enough to go to school, work, and get married. CFS patients are disabled from the beginning. HIV/AIDS patients eventually get worse and die. It's an individual value judgment whether one would prefer to live a long incapacitated life or a short functional one.
Posted by: Smurfette | June 23, 2010 8:21 PM
Dr. Klimas was comparing having CFS to HIV (not full blown AIDS) with treatment in the U.S. today for an individual.
Huh. A vapid, self-indulgent, culturally/historically/racially illiterate 'Sophies Choice', said with complete sincerity.
The majority of people with HIV-1 have no access to the appropriate medications. We have made HUGE progress in ART coverage, and its still SHIT. And 'oh, you live full normal lives until you get sick'? Tell that to the cohort of 3 month old dead babies I study. Tell that to the HIV-1 positive mothers in Africa who dont have access to meds when they deliver (HI! WE HAVE DRUGS THAT COULD SAVE YOUR BABYS LIFE, BUT YOU DONT GET THEM!).
Shorter Assholes: "If I were filthy rich with access to great medical care, bountiful food, and clean water, Id rather have HIV than CFS. Poor poor CFSers."
And I thought *my* humor was twisted.
Im going to go puke.
Posted by: ERV | June 23, 2010 9:25 PM
The quote Dr.Klimas made about rather having HIV than CFS was (foolishly) taken out of context and misappropriated.
"But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."
http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/
And yes, ERV, you really could do without acting like a ginormous cunt rag and instead act a bit more like the professional one would assume would accompany your age and level of education. At the very least, I guess we can all thank you for confirming that age and intelligence do not necessarily have any affect on maturity.
And at this point, I know my post won't be approved now, but the satisfaction of knowing that you'll have at least gotten the message is all I need.
Have a great day you silly and obnoxious little twat. :)
Posted by: Anonymously Unanonymous | June 23, 2010 9:28 PM
Dohoho, reverse psychology ftw. How did I know wouldn't be able to resist, Abbie?
Posted by: Anonymously Unanonymous | June 23, 2010 9:37 PM
I thank you for your gift of lulz, sir/madame!
I have a twisted super power. You know, "You can fly, but it gives you really bad diarrhea." or "You can run at the speed of light, but you always overshoot your mark by 5 miles."
I can predict the behaviors and actions of people... but only "special people" :(
Posted by: ERV | June 23, 2010 9:50 PM
ERV - I specifically said "with treatment" and in the U.S., and that is what Dr. Klimas was referring to since she was talking about patients she treats in her practice here in the U.S. And she treats adults, not babies.
If you had the choice between being a paraplegic now and having cancer with a 15-20 year prognosis, or even untreated with a 10 year prognosis, which would you choose? Different people would choose different choices.
Posted by: Smurfette | June 23, 2010 10:48 PM
P.S.
However that is the reality for people here on your blog. Compared to people dying of AIDS in Africa, the majority of people in the U.S. are filthy rich with access to great medical care, bountiful food, and clean water. We don't make individual decisions or preferences based on what some poor person in Africa's situation is, but our own.
Posted by: Smurfette | June 23, 2010 11:01 PM
The majority of people with HIV-1 have no access to the appropriate medications. We have made HUGE progress in ART coverage, and its still SHIT. And 'oh, you live full normal lives until you get sick'? Tell that to the cohort of 3 month old dead babies I study.
Oh Plez, Get out the violins, you make me puke. As if my tax dollars go support such a farce. Let them all die, that way they can take their disease with them. Survival of the fittest, I say. You're such jungle bunny. You HIV-1 denier
Posted by: Privilege | June 24, 2010 2:23 AM
P.P.S.
Dr. Klimas said if *she* had to choose between having the two, not if she switched her identity to whatever the demographic of HIV positive people are. So no, not if she were a poor prostitute, IV drug user, with no health insurance, or whatever. I don't know what the demographics are off the top of my head but for her hypothetical choice, it was irrelevant.
I didn't say "full normal lives". I said "short functional" which is not full and normal, but more functional for X number of years than a person with CFS is.
Posted by: Smurfette | June 24, 2010 3:35 AM
I've done research at both levels of schools... "top tier" and at schools much higher on the list.
Once you get past about 20, the game really does change. The selectivity of the schools increases more rapidly as the number of students attending drops, and the number of students applying increases. The SAT scores of say, UF (another top tier school) , don't even compare to Emory or Duke. Despite the fact that its Florida's flag school, it still doesn't hold a candle to Duke and Emory.
I have friends that have gone to a number of different institutions. I'm sorry but there is a huge difference. Many state school students are insecure about this. Granted there are some really good public state school institutions out there... but they are usually running around on an ego trip... because they are so insecure.
At my school, we loved having transfer kids from the state schools in our class... They usually failed out and it improved the curve for everybody. It was rare to find one that could "cut it."
In addition to that, a school like Emory or
Duke raises more more money, from fewer graduates, and usually have financial resources beyond what any state school can imagine.
Having been involved in research at both types of institutions.... I have to say they are nothing alike.
Well, they're both arrogant, its just only justified in some of them. lol.
Posted by: jud | June 24, 2010 8:05 AM
If two schools wanted to produce a copy of Shakespeare, the top level school is going to higher a literature expert and put him in a room with a computer and say 'get to it.' At a state school, the English expert has already been hired somewhere else. So they hire a bunch of monkeys. Eventually they produce Shakespeare. The copy is just as good, they're just producing it from a numbers game, rather than anything deliberate, or demonstrative of any ounce of understanding about literature or English.
If I had to choose which hospital I wanted to do a surgery? Duke over UF any day.
Posted by: jud | June 24, 2010 8:12 AM
Jud @ 141:
Jud @ 142:
Emphasis added.
Yep, seeeeelective school you had there, sport.
Posted by: NJ | June 24, 2010 8:44 AM
Smurfette-- The fact is, there is no magic machine that can 'exchange' CFS for AIDS. There is nothing to be gained by making that comparison, and you just end up looking like an inhuman, self-centered piece of shit.
What do you think it looks like to Average Joes/Janes when they see a woman 15-44 envying HIV/AIDS... the leading cause of death of women 15-44?
*DEATH*
Those poor, poor CFSers with their yoga classes and homeopathic 'physicians' and computers and internet.
Those lucky, lucky AIDS victims, dying before their 30th birthday.
If you really feel that way, I support your right to end your life.
If you dont feel that way, then stop even trying to make that comparison. Its twisted and disgusting.
Posted by: ERV | June 24, 2010 9:02 AM
congratulations, you caught my spelling mistake... maybe you can help me find the mistake i made in approximating the energy levels of this helium atom?.... i'm supposed to reconstruct the states based on an approximation of the from the hydrogen atom... well at least perturbations within it.. but i think something is wrong with the order of the equation i'm using... maybe you could help ?
Posted by: jud | June 24, 2010 9:09 AM
How nice of you to use your superior intelligence rearranging numbers and symbols on a piece of paper, jud, while us barely sentient cave-men bang rocks together trying to cure AIDS.
Just when I get all worked up and pissed off about something stupid in this thread, another CFSer comes along with lulz.
This is not a healthy relationship.
Posted by: ERV | June 24, 2010 9:56 AM
Jud@#145
"... maybe you can help me find the mistake i made in approximating the energy levels of this helium atom?...."
Nya Nya Nya Nya nya.
Maybe Einstein could help....whoops....no....he got his undergraduate and doctoral degrees from a Swiss state polytechnic school.
I've got two graduate degrees, one from a midwestern state school and one from Oxford.
What do you do with me Jud? Kiss my ass while calling me a peasant or what?
Grow up and get over yourself kid.
Posted by: Prometheus | June 24, 2010 10:14 AM
Jud@several
1 - That wasnt a spelling mistake, it was the wrong word.
2 - That wasnt the only mistake you made. (Ex, we are talking about graduate research programs and you are comparing SATs.)
3 - Yawn, Its been a while since I had to do that sort of thing, but I believe Eisberg and Resnick can help you out.*
IOW, get over yourself, youre not as smart as you think you are.
*My sophmore year, if I recall correctly. Apropos** for Jud given the etymology of "sophmore."
**Also apropos: XKCD
Posted by: Dave | June 24, 2010 11:58 AM
HAY GUISE I AM SMRT CUZ I CANT DO UNDERGRAD QM LULZ
Posted by: Dustin | June 24, 2010 1:25 PM
There are few things more pathetic than someone full of themselves because they half understand sophomore-year physics. This all reminds me of Wallaids bragging about being able to solve Maxwell's equations.
Posted by: Tyler DiPietro | June 24, 2010 4:08 PM
No there is no hocus pocus version of the hypothetical question and I wouldn't have posed it myself but I respect it when other people do. I read it simply as she was providing a counterexample to the assumption that CFS is definitely not as bad as HIV. Nobody's envying anybody. (Except maybe I envy CFSers who can do yoga.) There is nothing to be gained from most hypothetical questions or most things people say in general. However, doctors and patients make the longevity vs. quality of life choices all the time. And when CFSers decide whether to participate in a clinical trial of Valcyte or whatever, they are weighing the increased risk of cancer with having CFS.
Prevalence has little to do with the experience of having the illness in individuals. I'd rather have the flu than West Nile, but many many more people die of the flu. I'd rather have malaria than CJD but malaria has been much more decimating to countries racially and historically. Twisted and disgusting comparisons, perhaps.
Posted by: Smurfette | June 24, 2010 8:23 PM
P.S.
Believe it or not, everyone with CFS was an Average Joe/Jane before they became ill. So yeah, we know what it looks like (at least those of us who can remember) because we saw it before too. I would have said or did say what you said (minus insults and swear words). And I thought people with CFS were crazy hypochondriacs.
Average Joe/Jane focuses on *DEATH*. After becoming ill, we didn't lose any understanding of death compared to Average Joe/Jane's understanding of death. We just gained an understanding of disability and suffering/pain. Average Joe/Jane severely underestimates the significance and impact of disability and suffering, and the fact that disability, suffering, and death are all three different things not necessarily moving together.
Anyway, the comparison was first brought up by an Average Joe/Jane NY Times reader.
Posted by: Smurfette | June 25, 2010 2:49 AM
Okay Smurfette, you win. All sympathy to you. Your constant spinning and craw-fishing has won me over.
Damn your general malaise....Why God! Why her!
I hate the fact that you barely have the energy to write hundreds of massive walls of text on your mac book air and choke down a cruelty free soy milk and honey free trade herbe matte before the next flight to Reno.
Why don't people get how terrible your existence is?
If only you were in a wheelchair or had a big sucking war wound or something.
Life would be so much better if you were covered with sarcomas and forced to choose between holding your child or dying of pneumonia.
Maybe then everyone would know how truly terrible....oh look Deux Lux Bucket Backpacks are on sale. You need one for your meds.
No no don't get up. You pick listlessly at your baklava while I buy that for you.
I'll get you some Paul Smith dip dyed trainers too. They'll go great with your ennui.
Happy now?
Posted by: Prometheus | June 25, 2010 11:04 AM
I have no doubt that people (including Smurfette) are actually sick.
I just dont understand the *point* of this comparison.
Its racist, classist, ethnocentric, and mind blowingly cruel. I dont know how anyone even passingly familiar with the HIV/AIDS epidemic could say this with a straight face. It is not an apt comparison, on any level, except for "XMRV and HIV-1 are retroviruses", and XMRV has not been established as the causal role for CFS.
Empathy for HIV/AIDS patients, as in "I never paid attention to HIV/AIDS because I didnt think I was at risk for anything, now I might have a retrovirus, I feel a connection to them." or "I dont know if retrovirals will help me, but I know they are available. I feel a connection to those HIV patients that know drugs exist, but dont have access to them" or any semblance of a connection to another human.
Not "Im a rich white person, so I wish I had AIDS cause thats treatable here."
What is the *point* of that? Other than telling everyone around you you are racist, classist, ethnocentric, and mind blowingly cruel?
The NYT reader who brought up the idiocy of this analogy was spot on, and Klimas is a huge ass.
Posted by: ERV | June 25, 2010 11:48 AM
ERV,
You are so mean.
You just try going to William Sonoma with intermittent phantom nerve pain and a case of the blahs.
You'll start wishing you were being buggered by Satan before you even get to the Le Crueset.
You're only able to be a potty mouthed cow college graduate student because you don't have "THE DISEASE". *spooky fingers*
Posted by: Prometheus | June 25, 2010 12:44 PM
I understand why CFS patients would be going nuts over all the uncertainty that surrounds XMRV at the moment, but what's going on with everyone else here?
Didn't the HIV/CFS comparison start with a doctor who treats both, and commented that the quality of life for her HIV patients was, on average, higher than that of her CFS patients? That's not a racist claim.
It is sad that so many CFS patients feel the need to make these sorts of comparisons in order to encourage others to understand how seriously ill many of them are, and it can come across as self-pitying, but from the replies here it doesn't seem entirely unjustified.
re: The news of NIH/FDA possibly replicating the WPI's work - Has the Huber (sp?) negative study been published yet? If they found contamination in their reagents, is that a good reason to be cautious about any further XMRV findings? Presumably this problem could be controlled for relatively easily?
Maybe that's why there's a delay in any official announcement?
PS: If we're assuming XMRV does cause CFS for this discussion, then whether patients choose to take ARV's is as much down to the individual's personal circumstances, preferences and attitudes to risk as it is our ability to objectively assess their progress. That's not how science works, but that is how people make decisions about how to best live their lives. We could do some fancy econometric modeling to make it look a bit more sciencey?
Posted by: gf1 | June 25, 2010 12:55 PM
We have no cause for CFS, so we have no objective way of assessing progress. Even a double-blind, placebo controlled test couldn't conclude that XMRV was the cause because it might just be some other virus.
That study said that 67% of CFS patients had XMRV (if I remember correctly, the previous link won't open atm). What did the other 33% have?
Are 1/3 of people misdiagnosed? Is XMRV not the cause? Is it a minor cause and there's a larger underlying cause like genetic or something?
There's too many possibilities to just go throwing ARVs at people and get results good or bad because it's all invalid to use in the future anyways.
No. And what does econometrics have to do with running valid clinical trials for FDA approval to be used as a drug for a new use?
Why would you even bother trying to make it "look a bit more sciency?" How about just doing the science?
Posted by: Kemanorel | June 25, 2010 3:37 PM
ERV had said “Actually, Im granting the premise that XMRV causes CFS” which is why I started my comment with “If we're assuming XMRV does cause CFS for this discussion…”
Re ‘Making things look all sciencey’ – I thought it might help some of the people who seem to think Sue believed she was doing science, or taking part in a clinical trial. If we included some abstract formula for calculating which criteria would be needed before someone would chose to take ARV’s maybe it would salve their desire to believe that science alone would determine such a question.
Posted by: gf1 | June 25, 2010 4:49 PM
I've read enough blogs by cancer patients to know that they can still blog and tweet until two weeks before death. But sometimes I catch myself thinking the same thing when I see CFS forums with patients who can type more posts than I can.
ERV - I already explained this was not about comparing epidemics. Yes, the AIDS epidemic is far worse than just about anything else in history.
I see it's not the comparison that disgusts you but the fact that some people would rather have HIV. If it were the comparison that disgusted you, you would be just as disgusted by people who think they would rather have CFS.
The hypothetical choice was not wishing one had AIDS when one has CFS, or vice versa. It was if one had to choose. I might rather have one over the other, but if I already had either one, I wouldn't wish to be or envy the other. I can understand it was a poor method of delivering a quality of life assessment, and I wonder how offended her HIV patients were, but I'm assuming she considered that too. Also one doesn't need to be white nor rich to think this way.
Yes, and she's not the first and only one to do so. Several infectious disease specialists who have both AIDS and CFS patients have said similarly comparing quality of life. I've also had non-CFS related doctors who have cancer patients say they might rather have cancer.
Posted by: Smurfette | June 25, 2010 9:43 PM
I actually agree with his critique question except that the original NY Times article he was critiquing said nothing of the sort! Nobody made such an analogy until he did himself.
http://www.nytimes.com/2009/10/13/health/13fatigue.html?pagewanted=2
H.I.V. was mentioned once to say there are anti-retroviral drugs but that even if XMRV were a problem, it is different. The article also said everything he said he was so angry about it leaving out, that many viruses are benign, etc.
Sounded like he just saw the word CFS and thought "alarmist!" and ignored what the article said.
Posted by: Smurfette | June 26, 2010 1:37 AM
As a non-white person (I'm blue), this actually sounds like a faux-PC trying-too-hard to be racially conscious in a distant abstract impersonal way and inadvertently actually being more racist and classist. If you're concerned about cruelty, please take a hard look at many of the comments on your blog and your own.
Posted by: Smurfette | June 26, 2010 6:00 AM
Yes, using dirty words to critique a scientific study in one's field, or to say that a researcher is behaving inappropriately, is similar to saying that given the choice one would rather have AIDs than CFS. Given one will kill you on its own and the other has a leading cause of death from associated suicide (i.e won't fucking kill you in its own right) I think that's more than a little cruel to anyone with AIDS, access to antiretrovirals or not.
Are you seriously saying that you have some sort of personal experience with racism, which would give you insight into how ERV is being "Faux-PC" and following this by saying that you're blue. Are you a blue human being? Or are you a facetious fucking bag-of-cocks.
How exactly does on become more racist (i.e ERV) by being aware that by saying you would prefer AIDS over CFS you are ignoring the reality of most AIDS patients in comparison to most CFS patients? Please explain this logic as I find it impossible to follow. In one case you die from uncontrollable infections, in one case you die if you kill yourself. The comparison even in jest is stunningly ignorant.
Posted by: ben | June 26, 2010 10:33 AM
It is not racist, classist, nor ethnocentrist to ask a local question, or to apply local conditions to a local question. It is offensive to both sides to apply either a global average condition or a distant condition to a local question. It's also not racist, classist, nor ethnocentrist to state a personal choice.
It's bizarre to hear someone who looks white hold such ideas and fling these accusations when she has no idea what the race, class, nationality, nor country of origin of people on her blog.
You can read my previous posts. If you don't understand them and can't follow, there's nothing more I can explain for you. Do you think the doctors who are stating these opinions are really ignoring the reality of the condition of their patients? They are AIDS/infectious disease specialists and have both patients. They have cancer patients who die. Your difficulty with these statements is probably because you have some false assumptions.
Posted by: Smurfette | June 26, 2010 10:22 PM
Okay, here's my attempt at explanation.
I have no problem with people thinking HIV is worse than CFS for themselves.
I have no problem with people thinking CFS is worse than HIV for themselves.
You have an opinion and you can't stand the fact that other people hold different opinions.
You need to belittle, denigrate, verbally abuse, call them names, think they're an ass, stupid, crazy, etc. because they hold an opinion you don't agree with or can't understand.
Your opinion is right.
They need to think the same way you do to be considered human and get respect.
That is ethno-or-something-centrism.
Posted by: Smurfette | June 27, 2010 12:00 AM
Dt #83, you are exactly right, CFS is caused by not enough mitochondria. That is what causes the inability to exercise, there is no reserve ATP generation capacity by mitochondria. If you try to increase your ATP consumption beyond your maximum ATP production rate you can't, and you get unbelievably fatigued. It is a fatigue that you can't force yourself to overcome because it is due to a lack of ATP.
What causes the body to be in a state where it doesn't have enough mitochondria is low nitric oxide (my hypothesis). NO is what triggers mitochondria biogenesis.
http://www.chronicfatiguetreatments.com/wordpress/treatments/chronic-fatigue-syndrome-nitric-oxide/
Not enough mitochondria can generate enough ATP only by being operated at a higher mitochondria potential, where mitochondria produce more superoxide. This superoxide pulls down the NO level, which is a necessary feature to accelerate mitochondrial ATP production. NO inhibits cytochrome c oxidase, the enzyme which reduces O2 to water. To reduce more O2, cytochrome c oxidase has to be disinhibited by removing NO from it. That is what the superoxide does, with cytochrome c oxidase disinhibited, then O2 is consumed to a low partial pressure, so more O2 can diffuse from the blood down the now steeper O2 concentration gradient.
The “brain fog” of CFS is due to low NO in the brain, most likely due to neuroinflammation. It is very much like the neuroinflammation of neurosyphilis. NO is the major neurotransmitter that regulates functional connectivity. With low NO, your brain can't become fully engaged.
Antiretrovirals inhibit mitochondria biogenesis by inhibiting mitochondrial DNA replication. This is how they cause liver failure, but causing the liver to have not enough mitochondria.
ERV is exactly right. The data implicating XMRV to CFS is at best meager and inconclusive. Antiretrovirals are not benign drugs. With no assay to figure out how well the antiretrovirals are doing, it is impossible to balance the therapeutic effects (if any) with the side effects (which can be severe).
Sue, if you are depressed, you should get treatment for it. Neuroinflammation causes depression too. Depression is also a side effect of antiretrovirals.
Depression is the most serious and worst disease that there is, worse than HIV, worse than CFS. The reason depression is the worst disease is because feeling the most crappy that you possibly can is not a “bug”, it is a “feature”. You see, when your body is under near death metabolic stress, it induces what I call the “euphoric near death state”. This is the state invoked by the “runner's high”, by the stimulant drugs of abuse, by autoerotic asphyxiation, when you are drowning and begin to “see the light”. When you are being chased by a bear, and to be caught is certain death, your body will produce a physiological state where you can run yourself to death.
Being able to run yourself to death while being chased by a bear is a “feature”. To be able to run while your muscles are dying from ATP depletion, while you have broken bones, while your feet are cut to ribbons are all very useful survival abilities that could save your life if the bear gets tired before you drop dead from exhaustion. To be able to do this requires a state of euphoria. If a state of euphoria could be induced at will, organisms would do it, and end up like David Carradine, uselessly dead. There has to be an aversive state between normal and the euphoric near death metabolic state. That aversive state is depression. Feeling totally crappy when you are depressed is a “feature”. It is a sign that your body is working correctly.
Posted by: daedalus2u | July 1, 2010 2:50 PM
Told you so, last October. XMRV and CFS is a bucket full of stool. There are a number of a NAS members that should be embarrassed but won't be. A more interesting question is where did it come from? Is it an exogenized human ERV or is it an zoonotic exogenous infection, or is it sheer and utter bullshit resulting from laboratory contamination? The most interesting thing is that this virus has not been convincingly and reproducibly shown to exist but NIH is working itself up into a petulant frenzy to investigate it. O che sciagura d'essere senza coglioni! Voltaire
Posted by: zootfloggin | July 28, 2010 11:49 PM
Agree with zootfloggin, more BS from JM: http://www.landesbioscience.com/journals/40/article/12486/
Posted by: BT | July 31, 2010 12:00 PM
I don't think any of the scientist going to the international conference believe that this virus is a myth. They are all convinced its real.
Posted by: CAT | August 24, 2010 8:44 PM
"And the fact idiot physicians are happily prescribing these medications..."
I believe that doctors are prescribing these medications to CFS patients because they truly want to help and they are out of other ideas.
Desperate patients + frustrated doctors = Premature use of antiretrovirals for possible XMRV infection
My doctor [PCP] spend countless [unreimbursed] hours researching causes of fatigue and pain. She researched at work and at home. She never found a cause other than CFIDS, which I wasn't happy about and she could tell I wasn't ready to give in and accept a CFIDS diagnosis, so neither was she. She was a great doctor and even she prescribed somethings (not anything as dangerous as antiretrovirals) that were controversial and risky.
I, myself, strongly considered taking an antiretroviral because nothing could be worse than this disease (CFIDS), but I was lucky. I had a wonderful physician whom I felt very open with and was able to have a very open discussion about antiretrovirals. She didn't talk me out of them and I believe that if I would have pushed that she would have eventually prescribed them (or found someone who was more qualified that would). Instead of talking me out of them, she explained them to me (including explaining WHY they are not a good idea) and reminded me that she would be there for me (unfortunately for me, she has since retired) and she would continue to prescribe both opioids and amphetamines for as long as I needed them (As long as I thought I needed them, not the other way around) and she would continue to increase the dose and try new/different medications as needed.
Anyway, my point is that these physicians are well meaning and trying to help patients with no other options (hopefully Ampligen will be approved soon so that insurance companies will cover it)
Posted by: Stephen Matrese | November 22, 2011 5:58 AM
That thread has moved and can now be found here:
http://forums.phoenixrising.me/showthread.php?5270-Antiretroviral-Trial
(It is the same person starting this thread as the old thread)
Warning, the thread contains over 1k5 entries and can induce seizures…
Posted by: Tony Mach | January 14, 2012 11:37 AM
@Smurfette,97
As of the time of writing this, this is what the WPI has to say about the cancer claims:
Were any patients with lymphoma mentioned in the XMRV study? [view answer...]
Blood samples from the WPI repository were chosen at random and there were no patients chosen with lymphoma or mention of lymphoma in this study. Another preliminary study was done at a later date that had nothing to do with the XMRV Science publication.
http://www.wpinstitute.org/research/research_biobank.html
Don't know where the cancer claims came from (Maybe Mikovits the Non-Publisher mentioned it in one of her colorful and fact-packted presentations?), but the WPI denies being the source.
And one can clearly see that the fringe patients don't care were such rumours came from and if there is actually any substance to them. – they just keep repeating them until they become the narrative for ME/CFS…
It will be ages before this factual false shit has been shoveled out…
Posted by: Tony Mach | January 15, 2012 10:53 AM
In October 2009(!) Daniel Peterson reported for the WPI the usage of XMRV qRT-PCR in the context of XMRV treatment. I ask myself, why did the WPI bury this? Where the results simply too unreliable (as in random chance?).
"Methods for addressing the NK cell dysregulation
-PBMCs from XMRV infected patients with low NK cell function were activated with the mitogen PHA and treated with Ampligen
-The effects on NK cell (CD56+) phenotype were determined by flow cytomentry
-Signaling changes due to the treatment were detected via cytokine analysis
-The change in XMRV copy number was detected with qRT-PCR.
…
Preliminary Results Cont.
XMRV copy number is modulated by Ampligen
When treated with Ampligen, qRT-PCR indicates a decrease in some patients and an increase in others."
http://www.hhs.gov/advcomcfs/meetings/presentations/peterson_1009_pt6.pptx
Schedule:
http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html
Video:
http://videocast.nih.gov/summary.asp?live=7908
Peterson's PPT-Slides:
http://www.hhs.gov/advcomcfs/meetings/presentations/xmrv_cfs.html
Posted by: Tony Mach | January 24, 2012 12:58 PM