XMRV and antiretrovirals

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

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

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

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

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

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

Would you take this drug for your ‘tumor’?

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

They are horrifying.

And the fact idiot physicians are happily prescribing these medications…

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

Its horrifying.

This is all fucking horrifying.

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

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

Comments

  1. #1 Impish
    June 19, 2010

    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.

  2. #2 Cid
    June 19, 2010

    It’s funny – Ms.Smith and Ms.Mikovits are near opposites in such interesting ways.

    While Judy lacks proper knowledge and education, she has an overwhelming amount of empathy for those who suffer from ME/CFS and related or similar illnesses.

    Abbie on the hand, knows what she’s talking about regarding erv’s but clearly has no empathy for people with ME/CFS. Or if she does, you would not be able to tell from her blog.

    I don’t know why there is so much aggressiveness toward those who come on here (people like Sue.) They may be ignorant but that makes it all the more tragic. And instead of politely pointing out the negative consequences of their actions and trying to educate them, for some reason ERV and the majority of her fans belittle and ridicule these persons who are so physically and emotionally frail. And they do it knowingly.

    It’s pathetic. It’s disgusting. As an ME/CFS/WTF sufferer, and someone who opposes much of what the the WPI, but more Judy has said and done regarding XMRV, I come to this site for unparalleled insight. Unfortunately, I have to do it begrudgingly because I have to filter through the words of a 27 year old grad student with a PhD who ironically acts practically half her age. (Not to mention, again, a good chunk of her followers who seem to have the same maturity level. “Don’t mind me, I’m just here for the lulz.” Wow, seriously?)

    Yeah, yeah, it’s your blog, freedom of speech, you can say what you want – but it isn’t becoming of any of you.

    I commend KevinS above me (and others alike) who have been able to speak intelligently and rationally without feeling the need to be rude, condescending, or outright malicious to people that they realize are struggling just to get by in a scary, confusing world. It’s sad that such intelligent people can’t be more civil and compassionate toward others.

    Your behavior is an embarrassment and you should feel ashamed.

  3. #3 Impish
    June 19, 2010

    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.

  4. #4 DaveC
    June 19, 2010

    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

  5. #5 Cid
    June 19, 2010

    It’s funny – Ms.Smith and Ms.Mikovits are near opposites in such interesting ways.

    While I believe Judy lacks adequate knowledge and the ettique of a professional scientist, she has an overwhelming amount of empathy for those who suffer from ME/CFS and related or similar illnesses.

    Abbie on the hand, knows what she’s talking about regarding erv’s but clearly has no empathy for people with ME/CFS. Or if she does, you would not be able to tell from her blog posts.

    I don’t know why there is so much aggressiveness toward those who come on here (people like Sue.) They may be ignorant but that makes it all the more tragic. And instead of politely pointing out the negative consequences of their actions and trying to educate them, for some reason ERV and the majority of her fans belittle and ridicule these persons who are so physically and emotionally frail. And they do it knowingly.

    It’s pathetic. It’s disgusting. As an ME/CFS/WTF sufferer, and someone who opposes much of what the the WPI, but mostly what Judy has said and done regarding XMRV, I come to this site for unparalleled insight into the world of retrovirology. Unfortunately, I have to do it begrudgingly because I have to filter through the words of a 27 year old grad student with a PhD who ironically acts practically half her age. (Not to mention, again, a good chunk of her followers who seem to have the same maturity level. “Don’t mind me, I’m just here for the lulz.” …seriously?)

    Yeah, yeah, it’s your blog, freedom of speech, you can say what you want – but it isn’t becoming of any of you.

    I commend KevinS above me (and others alike) who have been able to speak intelligently and rationally without feeling the need to be rude, condescending, or outright malicious to people that they realize are struggling just to get by in a scary, confusing world. It’s sad that such intelligent people can’t be more civil and compassionate toward others.

    Your behavior is an embarrassment and you should feel ashamed.

  6. #6 EliBot
    June 19, 2010

    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.

  7. #7 Smurfette
    June 20, 2010

    @Impish

    The present study found that approximately 20% of the sample had died from cancer

    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)

    At the July workshop, Dr. Mikovits also presented preliminary data showing that 20 patients of the 101 in the study have lymphoma, a rare form of cancer.

    http://www.facebook.com/note.php?note_id=364365805538
    http://www.hhs.gov/advcomcfs/meetings/presentations/xmrv_cfs.html (Part 5, Slide 1)

    Using information from a public presentation at the federal CFS Advisory Committee, four of the 12 CFS subjects (WPI-1118, 1150, 1199 and 1125) included in the Science paper were also reported to have cancer – either lymphoma, mantle cell lymphoma or myelodysplasia. The CFSAC presentation identifies 17 WPI repository patients with CFS who also have cancer diagnoses.

    (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

    Did any of the samples used in the original study come from patients who ultimately developed cancer?

    Yes, one.

  8. #8 Kemanorel
    June 20, 2010

    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.

    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.

  9. #9 John
    June 20, 2010

    The responses to claims of gender bias in CFS research on this blog are pretty interesting. It’s pretty widely accepted that institutionalized gender bias has played a large role in the inadequate study of not only CFS but also other conditions which affect women disproportionally to men such as fibromyalgia, IBS, TMJ, multiple sclerosis(at least before the MRI was invented, if you doubt it feel free to google ‘multiple sclerosis’ + ‘hysteria’), etc.

    However apparently because the researchers involved are not card carrying members of the ‘Fuck Whiney Women Institute’, gender bias is not a legitimate concern, just like how researchers back in the 80′s weren’t ‘organized’ against homosexuals so bias played no part in the early years of AIDS research either, right? It’s especially funny that women such as ERV are so dismissive of the notion of gender bias when a lot of these same researchers who peg CFS as a ‘functional’ syndrome, aka a psychiatric/psychosocial/behavorial disorder, also include PMS in this category as well(1). Here’s my question- is PMS really a ‘functional’ syndrome with all of the psychiatric/behavorial baggage which accompanies such a notion, or is it merely a poorly understood organic biological disorder which has largely been ignored by the historically male dominated research establishment?

    Take the following for instance from a JAMA article from 1900 on hysteria and multiple sclerosis- “Buzzard says: ‘Multiple sclerosis, like hysteria, is common in women at puberty; a history of some moral shock often preceeds both, there are few cases of multiple sclerosis in which there are not hysterical symptoms added; and many symptoms of the former have long been looked on as hysterical’.”(2)

    Compare the above to a 2007 interview with Bill Reeves, former head of CDC’s CFS research program(Dr. Reeves was ‘transferred’ to a different post shortly after the XMRV findings came out) in which he states that CFS is a result of a ‘disordered stress response’ which predominately affects the ‘female gender’, with the ‘female gender’ arising as a result of ‘women being treated differently than men in society’. There are numerous examples of senior CDC staff explicitly differentiating ‘illness vs. disease’ and ‘sex vs. gender’ in the area of CFS research, with illness being a behavior and disease being a disease, and sex being XX vs. XY and gender being classic Victorian gender ‘roles’, for lack of a better term. Here’s a stellar quote indeed from ol’ doctor Reeves taken from 2007- “It’s gender. What was different in metropolitan and rural is 5 times as many women than men in metropolitan areas have it, twice as many men as women have it in the rural areas…And that is beginning to get us to look at is there something different in the stress patterns of men and women in those areas that account for that difference. Rather than it’s women sex; (it’s) women or men’s roles and how they’re functioning in their different parts of society.”(3)

    What is also noteworthy is that in the study being referred to, the CDC is using a new definition of CFS called the ‘Emperical’ definition which uses the SF-36 ‘Role Emotional’ subscale to define their ‘CFS’ cases, with the ‘Role Emotional’ subscale specifically pertaining to reduced functioning as a result of emotional disturbances. Despite the ‘Empirical definition’ being published 5 years ago, no other CFS research group in the world has used it and what’s more, the Role Emotional subscale has already been shown in previous research to have the least correlation with CFS out of any of the SF-36 subscales. No gender bias there!

    (sorry for the non-htmlness of this post)

    1. http://www.unumprovident.co.uk/Home/AccessiblePDF/CMOReport2002.htm#3

    2. http://books.google.com/books?id=5k_lAAAAMAAJ&pg=PA583&lpg=PA583&dq=multiple+sclerosis+hysteria&source=bl&ots=-EFaIo_CvP&sig=ZW8N-AP74VZ34HWVW4iwwcwBd_8&hl=en&ei=zsEdTKbFCsXsnQem6q2QDg&sa=X&oi=book_result&ct=result&resnum=10&ved=0CEoQ6AEwCQ#v=onepage&q=multiple%20sclerosis%20hysteria&f=false

    3. http://www.sacfs.asn.au/news/2009/09/09_26_transcript_dr_reeves.htm

  10. #10 DaveC
    June 20, 2010

    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

  11. #11 DaveC
    June 20, 2010

    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

  12. #12 Lisa Simpson
    June 20, 2010

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

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

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

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

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

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

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

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

  13. #13 lucas
    June 20, 2010

    I have been living with a-bacteriological prostatitis for more than 20 years
    After many years of taking loads of antibiotics, and NSAID’s medication,all without any result or change in my illness, I had a remarkabel almost 100% recovery with hiv medication of my infected prostate.This was in july 2009 last year.
    All my symptoms where gone!!! in 2 to 3 days after I started taking the hiv medication cocktail !! (symptoms I had for years and years and wich became worse and worse over the years) The medication was a cocktail of Isentress,Norvir,prezista and Intellence.
    The reason of this treatment was an unsafe sexual contact, so I went to the University Clinic where they gave me this treatment for 1 month as a precaution/prevention of a possible hiv infection.
    After this one month treatment was finished ,all of my symptoms came back.I was back in hell.
    I had some pills left, so I tried again, but in 4 times lesser dose, and yes, again my symptoms disappeared.
    I told my dokters there was a connection between the medication and my so called a-bacterial prostatitis.
    Not having this medication anymore, turned my life back to a living hell !!
    April the 1 th 2010 I read on the internet the article of Ila Singh, M.D. Ph.D. That they probably found connection between retro virus infection in prostate and possible treatment with hiv medication.
    The medication worked for my horrible illness that destroys my life on all levels, and i realy hope there will be a solution very soon. I would rather live my life with the medication, that make me symptom free and gave me back my life , than live in hell 24/7
    Those who who are against the hiv medication path for my and other illnesses, swap with me and my disease, we will talk then …. be my guest !!! Lucas Belgium

  14. #14 Edugreat
    June 20, 2010

    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.

  15. #15 Kemanorel
    June 21, 2010

    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.

    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?

  16. #16 Edugreat
    June 21, 2010

    Hi again –
    PLEASE give me a referance to one or more research based scientific studies that you approve of which shows that giving CDC diagnosed CFS sufferers anti-depression drugs does anything more than help with sleep issues. And since you don’t have CFS let me tell you that sleep does NOT equal rest and rejuvination – All people want is to be taken seriously that it IS a biological / physical ailment and thus needs a medical not psycological treatment plan which takes into account the fact that there ARE numerous biological markers which point to an infectious agent/s – Until THAT is widely accepted sufferers HAVE to circumvent the traditional doctor patient protocals and do what needs to be done to treat themselves (and yes most ARE aware of the possible side effects – but no one else is doing the “double blind” studies since the CDC and many european health agencies don’t acknowledge the biological markers –
    the only reason this is in the news is that someone with $ got CFS and paid to dothe research – our government and drug companies didn’t think the sufferers were worth it to spend time or money on.

  17. #17 edugrreat
    June 21, 2010

    HERE is why people have to resort to other “approved” anti virals, because the FDA/CDC burocracy hasn’t approved Ampligen – a treatment SHOWN to work.
    WHY – it isn’t about the science – its the money
    ——————
    In 2004 HEB completed the phase III clinical trial for use of Ampligen in the treatment of CFS. Clinical data on the primary endpoint exercise treadmill duration showed that patients receiving Ampligen for 40 weeks improved exercise treadmill performance by a medically and statistically significant amount compared to the placebo group. New data was presented on increases in exercise capacity with Ampligen and placebo which were correlated with an improved ability to utilize oxygen, so called, maximum oxygen consumption (or VO2max).

    VO2max has been previously shown by others to be decreased with individuals with CFS. An abnormal exercise stress test, including a low VO2max, could help qualify CFS patients for disability under Social Security Administration rules. Additional data on subset analyses showed that both stratification cohorts (those with baseline exercise treadmill duration greater than or less than nine minutes) improved exercise capacity by over 6.5%, an amount considered medically significant in other chronic diseases.

    Ampligen has received orphan drug product designation [FDA] (at a time when the real number of CFS patients was underestimated), emergency (compassionate) cost Recovery sales authorization [FDA] and “promising” clinical outcome recognition based on the evaluation of certain summary clinical reports (AHRQ, or the Agency Health Research Quality)

  18. #18 Impish
    June 21, 2010

    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.

  19. #19 Impish
    June 21, 2010

    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.

  20. #20 Kemanorel
    June 22, 2010

    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.

    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.

  21. #21 Jayne
    June 22, 2010

    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.

  22. #22 qetzal
    June 22, 2010

    Impish (#103):

    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.

    True, but the only way to show that the drug really does have a positive effect on the new condition is through controlled, double blind trials. That’s especially true for a condition like CFS, where clinical benefit can only be determined based on subjective variables.

    Please note: this is not meant to imply that people with CFS don’t really have fatigue, for example. It ONLY means that we can’t objectively measure fatigue, so double blind, placebo controlled trials become almost essential to determine if a drug really works.

    Of course, I’m aware there are a variety of more objective markers that may be significant in CFS. Pro-inflammatory cytokine levels, for example. But it’s not enough to just measure those. It’s essential to show that the patient’s symptoms improve. It doesn’t do any good if you “improve” their cytokine levels but they still feel terrible.

    In other words, you can’t get around the importance of controlled, blinded trials.

  23. #23 Smurfette
    June 22, 2010

    http://www.mmdnewswire.com/xmrv-9040.html

    Original Press Release from the Netherlands: FDA and NIH confirm ‘XMRV findings’

    Gendringen, NL (MMD Newswire) June 22, 2010 — The FDA and the NIH have independently confirmed the XMRV findings as published in Science, October last. This confirmation was issued by Dr. Harvey Alter of the NIH during a closed workshop on blood transfusion held on May 26-27 in Zagreb.

  24. #24 Impish
    June 22, 2010

    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…

  25. #25 sue
    June 22, 2010

    http://www.mmdnewswire.com/xmrv-9040.html

    HA read it and weep you stupid cunt

  26. #26 ERV
    June 22, 2010

    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?

  27. #27 Smurfette
    June 22, 2010

    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.

  28. #28 Kemanorel
    June 23, 2010

    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.

    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).

  29. #29 Kemanorel
    June 23, 2010

    http://www.mmdnewswire.com/xmrv-9040.html

    HA read it and weep you stupid cunt

    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?”

  30. #30 sue
    June 23, 2010

    could you please delete my last post? i dont feel good about the language i used.

    sue

  31. #31 sue
    June 23, 2010

    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

  32. #32 Dawn
    June 23, 2010

    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.

  33. #33 Smurfette
    June 23, 2010

    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.

  34. #34 ERV
    June 23, 2010

    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

  35. #35 Impish
    June 23, 2010

    I wouldn’t bad mouth yuppies like that :-)

  36. #36 Prometheus
    June 23, 2010

    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.

  37. #37 Kemanorel
    June 23, 2010

    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

    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.

  38. #38 JLHank
    June 23, 2010

    Eat your words, Mr. Know-it-all. NIH and FDA have found XMRV.

    By the way, do you even know anyone with CFS/ME? Try to look at both sides of the story and be OBJECTIVE instead of making your decision before you read all of the evidence. God help us if you get in any position that jeopardizes the health of people who are truly sick. Although I highly doubt you will make it because of your foolish behaviors.

  39. #39 Impish
    June 23, 2010

    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.

  40. #40 Siah
    June 23, 2010

    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.

  41. #41 ERV
    June 23, 2010

    Then I suggest she contact the New York Times to correct this error.

    In the spring of 2006, they met Dr. Judy A. Mikovits, a virus expert who had spent 22 years working at the National Cancer Institute. She had left the institute in 2001 to get married and move to California, where she went to work for a drug development company that failed. She was tending bar at a yacht club when a patron said her constant talk about viruses reminded him of someone he knew in Nevada. That person was a friend of Annette Whittemore’s. Dr. Mikovits soon found herself at a conference on chronic fatigue syndrome.

    And ya, CFS vs AIDS, Id TOTALLY pick CFS.

    Get the fuck off of my blog, asshole.

  42. #42 Kemanorel
    June 23, 2010

    A study showed with MBA students that what school you went to had no effect on your eventual success.

    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?

    I seriously don’t get the whole your school is better than mine thing. In this modern era knowledge is basically available anywhere.

    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.

  43. #43 Kemanorel
    June 23, 2010

    To reiterate my second point in my previous post:

    It’s dangerous because it makes laymen think they know as much as the experts.

    See Siah at #124.

  44. #44 Prometheus
    June 23, 2010

    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.

  45. #45 Siah
    June 23, 2010

    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.

  46. #46 ERV
    June 23, 2010

    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 patrons friends 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.

  47. #47 Justin Reilly, esq.
    June 23, 2010

    ERV- now that the truth is coming out, I expect you to repent for your small part in the persecution of ME/XAND patients. Let’s advance science. The case is closed beyond a reasonable doubt now and all competent scientists must now support WPI, XMRV in ME research, research into the DeFreitas retrovirus and biomedical research into ME in general! Our NIH funding is $3M per year. It needs to be $3B- what HIV gets!

  48. #48 Prometheus
    June 23, 2010

    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.

  49. #49 Smurfette
    June 23, 2010

    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/

    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.

    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.

  50. #50 ERV
    June 23, 2010

    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.

  51. #51 Hip
    June 23, 2010

    Is there any significant reason that you do not publish my comment of a few days back, addressed to Sue, who appears to be having a severe case of chronic fatigue syndrome displaying very nasty mental state torments?

    I suggested that Sue try the anti-inflammatory approach (rather than dabble in potentially toxic anti-retrovirals).

    If you want some scientific background on inflammatory processes in a variety of disease, Google “sickness syndrome”. Anti-inflammatory approaches are beginning to be uses with a lot of success on diseases from CFS to cancer, to fix the dysfunctional brain chemistry that often found in these conditions, that cause suffering like chronic generalized anxiety disorder.

    The interesting thing about viruses (and other classes of microbe) that I have discovered since learning various interesting things about them is that it is probably their virulence factors that cause more harm and disruption to the metabolism that the microorganism itself. For example: inflammatory processes in many diseases may be caused by the interaction of virulence factors manufactured by the microbe, such as superantigens or “fake” cytokines, which will modulate the immune system, causing immune dysregulation.

    Of course, you do not want to over-inhibit inflammation, with potent anti-inflammatories like prednisone, as this would be harmful in the long term. But mild inhibition of brain inflammation (using herbs) can bring tranquility back to a mind in biochemical disarray from this immunopathology.

    Incidentally, if you ever want to treat premenstrual tension, which can be underpinned by brain inflammation, then this same herbal anti-inflammatory protocol can work wonders. It might even change your often invidious writing style – perhaps fueled by a touch of PMT – into something more relaxed… ;-)

  52. #52 Anonymously Unanonymous
    June 23, 2010

    Dohoho, reverse psychology ftw. How did I know wouldn’t be able to resist, Abbie?

  53. #53 ERV
    June 23, 2010

    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” :(

  54. #54 Smurfette
    June 23, 2010

    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.

  55. #55 Smurfette
    June 23, 2010

    P.S.

    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.”

    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.

  56. #56 Privilege
    June 24, 2010

    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

  57. #57 Smurfette
    June 24, 2010

    P.P.S.

    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’?

    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.

  58. #58 Chris
    June 24, 2010

    ERV started out with good point. ARVs aren’t a simple solution. U.S. AIDS patients are semi-privileged to consider a new behind and silicone cheeks a fair tradeoff.
    Is it premature to start prescribing ARVs for XMRV? Yes, but quackery, to rate this kind of tirade? There’s a lot more “MD’s” out there doing a lot worse, and many more willing to remain simply ignorant, no matter what school they came from. Likewise, as alluded to here, the fight against ARV resistance has far bigger challenges than a few tinkering patients; it’s a war without a forseeable end.

    Partly, we can thank Big Pharma for being hardly closer to an end than 25 years ago. The defense here has stated the way things should be done, that only a few novel drugs of real benefit are approved yearly; that’s true. Far, far more is spent on marketing and developing also-rans short-circuited to the shelves with a wink from Uncle Sam. Targets? Hey, patent’s running out; let’s think of some.
    There’s plenty of money at the top, just very misdirected. ME/CFS patients are mindful of this. It’s nice to see drug companies interested, but we know they care about us as much as BP does about the 11 rig workers they blew up – let alone the HIV patients who’ve paid the price for progress. Just bodies for profits.

    WPI took an gamble bringing XMRV to the spotlight. Up against the likes, just for starters, of Eleanor Hannah at NIH, who doesn’t want a “scare,” and doesn’t want patients asking unapproved questions of their government in public after this meaningless virus emerged. Up against McClure in the U.K. with her credentials and Wessleyan allies, and those Dutch now sprung by a leak in their own dike. True, nobody’s proven XMRV causes or contributes to anything – publicly. Call all the donation bans politically safe paranoia. Still, why were the Germans studying this supposed nothing in respiratory tracts three years ago? WPI, press on – the truth may be just starting to emerge.

    As for the rest, for all the talk here of babies wasting away, etc., I’m not seeing anything near a level-headed passion for science or love of humanity here; quite the sick polar opposite. I’m glad you’re stuffed away in the Taj’ at Oklahoma, or wherever, and not my doctors, and I’ll happily get off your blog.

  59. #59 jud
    June 24, 2010

    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.

  60. #60 jud
    June 24, 2010

    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.

  61. #61 NJ
    June 24, 2010

    Jud @ 141:

    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.

    Jud @ 142:

    If two schools wanted to produce a copy of Shakespeare, the top level school is going to higher a literature expert

    Emphasis added.

    Yep, seeeeelective school you had there, sport.

  62. #62 ERV
    June 24, 2010

    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.

  63. #63 jud
    June 24, 2010

    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 ?

  64. #64 jud
    June 24, 2010

    Ill be honest… I can’t spell for shit. I went to school for science. I can’t spell, but I can handle a lot of math equations that most people would balk at. Frankly I went to school for science, and perhaps, if you did the same (and not English), you would have understood the missteps in logic this board keeps making with regard to evidence surrounding CFS. It is regrettable… but who really cares at this point.

  65. #65 ERV
    June 24, 2010

    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.

  66. #66 Prometheus
    June 24, 2010

    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.

  67. #67 Dave
    June 24, 2010

    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

  68. #68 Dustin
    June 24, 2010

    HAY GUISE I AM SMRT CUZ I CANT DO UNDERGRAD QM LULZ

  69. #69 Tyler DiPietro
    June 24, 2010

    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.

  70. #70 Smurfette
    June 24, 2010

    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.

    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.

  71. #71 wms
    June 25, 2010

    @ ERV…”And ya, CFS vs AIDS, Id TOTALLY pick CFS.”

    Cheer up. Maybe you’ll get it.

  72. #72 SG
    June 25, 2010

    Guess y’all are too busy insulting sick people to notice the newest news:

    FDA and NIH confirm WPI XMRV findings

    http://www.virology.ws/2010/06/22/fda-and-nih-confirm-wpi-xmrv-findings/

  73. #73 Smurfette
    June 25, 2010

    P.S.

    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*

    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.

  74. #74 Prometheus
    June 25, 2010

    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?

  75. #75 ERV
    June 25, 2010

    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.

  76. #76 Prometheus
    June 25, 2010

    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*

  77. #77 gf1
    June 25, 2010

    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?

  78. #78 Kemanorel
    June 25, 2010

    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.

    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.

    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?

    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?

  79. #79 gf1
    June 25, 2010

    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.

  80. #80 Smurfette
    June 25, 2010

    I hate the fact that you barely have the energy to write hundreds of massive walls of text

    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.

    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.

    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.

  81. #81 Smurfette
    June 26, 2010

    The NYT reader who brought up the idiocy of this analogy was spot on, and Klimas is a huge ass.

    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.

  82. #82 Smurfette
    June 26, 2010

    Its racist, classist, ethnocentric, and mind blowingly cruel.

    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.

  83. #83 ben
    June 26, 2010

    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.

  84. #84 Smurfette
    June 26, 2010

    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.

  85. #85 Smurfette
    June 27, 2010

    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.

  86. #86 Viralload
    June 27, 2010

    Here is another idiot ass who leaving his practice to research XMRV in New York. Geez, why don’t they just get it that there’s nothing but poor science behind this as Erv has pointed out.

    “Dr. Marcus Conant, the first to identify Kaposi’s sarcoma in HIV/AIDS patients back in 1981, is trading his San Francisco practice for consulting work with XMRV researchers in New York”

  87. #87 daedalus2u
    July 1, 2010

    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.

  88. #88 Lala
    July 8, 2010

    If you have a special interest in this topic, or in autism, check out this article – serious but very amusing too – Review/summary of Osler’s Web on AgeOfAutism.com

    The book is a fascinating read for medical sleuths and/or anyone interested in the history of CFS. The book might become a bestseller if this XMRV relationship pans out.

  89. #89 zootfloggin
    July 28, 2010

    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

  90. #90 BT
    July 31, 2010

    Agree with zootfloggin, more BS from JM: http://www.landesbioscience.com/journals/40/article/12486/

  91. #91 CAT
    August 24, 2010

    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.

  92. #92 caia
    August 27, 2010

    Imagine you arent feeling well.

    Replace this phrase with, “Imagine you’ve been totally disabled for years or even decades.” Then continue with your scenario.

    I’m not saying it’s a good idea to take anti-retrovirals for CFS outside of a clinical trial, but that change would help you understand why some patients — who’ve had no hope on the horizon for a damn long time, and are damn sick — would consider it.

  93. #93 Stephen Matrese
    November 22, 2011

    “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)

  94. #94 Tony Mach
    January 14, 2012

    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…

  95. #95 Tony Mach
    January 15, 2012

    @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…

  96. #96 Tony Mach
    January 24, 2012

    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

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