A cure for ME/CFS? Don’t rejoice just yet…

We now know the cause for ME/CFS http://www.dailymail.co.uk/health/article-1219207/Chronic-fatigue-caused-retrovirus-say-scientists.html Well, maybe, but let’s not get carried away.

While this discovery looks promising, a treatment/cure for ME/CFS is probably a long way off – the first step is to review and independently verify the research. If it pans out then – if Big Pharma is willing to invest the time and money – the search for a cure can begin. Maybe.

The trouble is that people pop up with causes for ME almost as often as they do with “cures” (a few months ago it was fluoride in the water supply), which naturally makes drug companies look at claims with a jaundiced eye, but at least this one looks like a viable line of research. What bothers me is that people in the ME/CFS community are seizing on this report uncritically, and that’s never good.

Despite the absurdly optimistic comments in the Mail (and my lone note of caution – a short version of this), I don’t think anyone should realistically look for a genuine cure in less than 10 years (and in the meantime there’ll be loads more quackery to fend off). And, of course, as with the common cold, and with most cancers, knowing the cause doesn’t guarantee a cure, I’m afraid.

But – do we genuinely have a cause? The research showed that a little under 68% of ME/CFS patients tested had the active XMRV virus. However, 95% had antibodies to the virus, showing that they had at some time been infected by it, but were no longer infected (hence the antibodies).

A cure can treat those patients who are still affected by the virus, but that remedy – designed to kill an active virus – is likely to have zero effect on those whose immune systems have already dealt with the virus, i.e. those with antibodies.

There the body has dealt with the virus, yet the people are still sick with ME/CFS, which to my mind poses a very serious question – is XMRV the real culprit? It’s presence suggests it is, but what about its absence in the 95% with antibodies? The virus has been and gone. Why are they ill?

So on the one hand, maybe the minority with an active viral infection can be treated,  but with the majority we’re pretty much back to square one, with Post Viral Fatigue Syndrome. And we still can’t fix that!

See More Thoughts on XMRV

The following is taken from my reply to the most recent comment (at the time). because of it’s nature, I thought I’d move it to here. The comment, and my reply, can be found in the usual place:-

This is a snippet from the WPI article:-

“We now have evidence that a retrovirus named XMRV is frequently present in the blood of patients with CFS. This discovery could be a
major step in the discovery of vital treatment options for millions of patients,” said Judy Mikovits, Ph.D., director of research for WPI
and leader of the team that discovered this association. Researchers cautioned however, that this finding shows there is an association
between XMRV and CFS but does not prove that XMRV causes CFS.

Even the damned researchers are urging caution. XMRV has been found in prostate cancer and now ME/CFS. With further research this thing may prove to be so common in proves nothing. The point is WE JUST DON’T KNOW YET.

This is a promising line of enquiry which needs pursuing rigorously – assuming the funding is available. But, as things stand, that’s ALL it is. What follows is the text of the WPI article in Science magazine (and researchers going straight to a magazine, and hence to the press, rather than through the peer-review system always worries me). As it’s in the public domain already, I don’t believe there are any copyright issues. Note, throughout, their careful choice of words,- these people know EXACTLY what they’ve got – it’s a nugget, not the mother-lode:-

WPI RESEARCHERS DISCOVER RETROVIRAL LINK TO CHRONIC FATIGUE SYNDROME

Scientists have discovered a potential retroviral link to chronic fatigue syndrome, known as CFS or ME, a debilitating disease that affects
millions of people in the United States. Researchers from the Whittemore Peterson Institute (WPI), located at the University of
Nevada, Reno, the National Cancer Institute (NCI), part of the National Institutes of Health, and the Cleveland Clinic, report this
finding online Oct. 8, 2009, issue of Science.

“We now have evidence that a retrovirus named XMRV is frequently present in the blood of patients with CFS. This discovery could be a
major step in the discovery of vital treatment options for millions of patients,” said Judy Mikovits, Ph.D., director of research for WPI
and leader of the team that discovered this association. Researchers cautioned however, that this finding shows there is an association
between XMRV and CFS but does not prove that XMRV causes CFS.

The scientists provide a new hypothesis for a retrovirus link with CFS. The virus, XMRV, was first identified by Robert H. Silverman,
Ph.D., professor in the Department of Cancer Biology at the Cleveland Clinic Lerner Research Institute, in men who had a specific immune
system defect that reduced their ability to fight viral infections.

“The discovery of XMRV in two major diseases, prostate cancer and now chronic fatigue syndrome, is very exciting. If cause-and-effect is
established, there would be a new opportunity for prevention and treatment of these diseases,” said Silverman, a co-author on the CFS paper.

Commonality of an immune system defect in patients with CFS and prostate cancer led researchers to look for the virus in their blood
samples. In this study, WPI scientists identified XMRV in the blood of 68 of 101 (67 percent) CFS patients. In contrast, they found that
eight of 218 healthy people (3.7 percent) contained XMRV DNA. The research team not only found that blood cells contained XMRV but also
expressed XMRV proteins at high levels and produced infectious viral particles. A clinically validated test to detect XMRV antibodies in
patients’ plasma is currently under development.

These results were also supported by the observation of retrovirus particles in patient samples when examined using transmission
electron microscopy. The data demonstrate the first direct isolation of infectious XMRV from humans.

“These compelling data allow the development of a hypothesis concerning a cause of this complex and misunderstood disease, since
retroviruses are a known cause of neurodegenerative diseases and cancer in man,” said Francis Ruscetti, Ph.D., Laboratory of
Experimental Immunology, NCI.

Retroviruses like XMRV have also been shown to activate a number of other latent viruses. This could explain why so many different
viruses, such as Epstein-Barr virus, which was causally linked to Burkitt’s and other lymphomas in the 1970s, have been associated with
CFS. It is important to note that retroviruses, like XMRV, are not airborne.

“The scientific evidence that a retrovirus is implicated in CFS opens a new world of possibilities for so many people,” said Annette
Whittemore, founder and president of WPI and mother of a CFS patient. “Scientists can now begin the important work of translating
this discovery into medical care for individuals with XMRV related diseases.”

Dan Peterson, M.D., medical director of WPI added, “Patients with CFS deal with a myriad of health issues as their quality of life
declines. I’m excited about the possibility of providing patients, who are positive for XMRV, a definitive diagnosis, and hopefully very
soon, a range of effective treatments options.”

The Whittemore Peterson Institute for Neuro Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with
illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in lifelong
disease and disability. http://www.wpinstitute.org.

From U.S. Department of Health and Human Services
NATIONAL INSTITUTES OF HEALTH NIH News
National Cancer Institute (NCI)

And let’s not lose sight of the previous “causes” of ME/CFS that have failed to pan out. At this stage we just don’t know if this will prove to be another. And we really need to know what the XMRV vector is – how is it caught? They’ve said it’s not airborne, so how? In the UK alone, there are a quarter of a million people with ME/CFS – what common factor is there with them, never mind world-wide, which brought about infection? That seems not even to have been discussed. Of all the people with ME/CFS that I’ve known, none of us had anything at all in common – except ME/CFS, so what’s the link?

We really must have more research, and on a much larger scale – several thousand ME/CFS sufferers from around the world, to give as wide a spread as possible (to make sure this isn’t a localised phenomenon), and by a different team (independent verification is vital) – then we will have cause for optimism. At the moment we most certainly do not, not on the scale I’m seeing it, anyway.

People have only recently started poking XMRV with a sharp stick – we don’t know yet what hoops it’s going to jump through, where else it’s going to be found and by what vector(s) it’s transmitted. Wikipedia says “It has been suggested that XMRV could be sexually transmitted”. Might I suggest, with the same supporting evidence – i.e. bugger all – that this is bollocks. At least, that’s what I was going to say, and then I thought about my personal life.

I’ve been disabled all my life (serious respiratory illness), long before ME/CFS came along to screw things up even more, and as a result my sexual activity was way below average, and unprotected sex not at all. Not through any shortcomings on my part, but there was a dearth of partners who didn’t mind me wheezing down their ear during sex! And I’m massively allergic to most perfumes and make-up products, too, and not being able to breathe tends to cramp one’s style just a tad.

However, in 1984 I got married, and unprotected sexual activity went through the roof (which is probably more than you wanted to know, but bear with me). In  October 1985 I began to show the first symptoms of ME/CFS, and by the end of 1986 I was in a wheelchair, and by 1989 my marriage was over, my wife preferring to believe the doctors who refused to acknowledge that I was ill, rather than the evidence of her own eyes (bitter? oh yeah!). So maybe sex is a vector. That can be demonstrated, with a fair degree of accuracy, by measuring the occurrence of MC/CFS in celibate communities, compared to the world at large. It’s not infallible, as many people bonk their brains out before taking their vows, but it’s at least as good an indicator as XMRV is right now.

However, we can’t even say for sure, at the moment, that XMRV is a even marker for ME/CFS, never mind the cause of it. Much more research is needed before the end of the road is in sight for even a diagnostic test. So please, let’s keep a sense of perspective, people, and not go off half-cocked – let’s just wait and see what happens. And let’s put all talk of a cure on the back-burner, because in the current state of play, it’s absurd.

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9 thoughts on “A cure for ME/CFS? Don’t rejoice just yet…

  1. insightful Ron: the real culprit is an immune system in humoral dominance, so viruses flourish. i suspect drug trials will fail. why? mainstream antiretrovirals are dangerous and the root problem will remain. can immunity be shifted to cell mediated dominance? yes, with no-longer patented drugs, herbs, and diet. see the problem.

  2. Hi Ron

    I would love to see the complete report of the research on the link between the xmrv virus and m.e. I find its hard to make judgements on just the snippets of research as the variables and method can be important factors in making suggestions from the research.

    The press seem to have reported it as if its a major breakthrough in finding the cause of m.e. However, I felt a bit disappointed when I read the articles as they are far from suggesting a definite cause as yet.

    These recent articles provoked a discussion amongst some of my friends. One thought that there is lots of research into m.e. as drug companies always invest money into research so that they can produce and sell new drugs. That got me thinking about what happens when the cause of a chronic illness will be unrelated to drugs to solve the problem? Who would invest in research then? For example my illness began after using a pet flea spray for carpets which contained organophosphates (this was removed from the product Acclaim 2000 3 months after I became ill). A drug company may not be interested in looking further into this link (m.e. and pesticides) as there may be no profit in it further down the line.

    Is our failure to prove causes of our ever increasing long-term chronic illness, especially environmental factors, due to the fact that we are too reliant on drug companies to research health matters? Where a health matter will not result in profits for the drug companies there is very little research done.

    One thing the research may give hope is for a vaccine against m.e. for those that may have a genetic predisposition. For example it is some type of virus that puts females at risk from cervical cancer . They are now giving girls a vaccine against the virus before they get exposed to it.

    Fingers crossed
    Gergy
    I am disappointed in the daily mail article on their website about m.e. I think it is important to use the term m.e. if that is what they are talking about not cfs. Their discription of m.e. as tiredness and achey leaves alot to be desired. It makes m.e. sound relatively bearable! When alot of us that suffer from chronic exhaustion and severe pains, along with the many other symptoms that effect the whole of the body and the brain would prefer it if journalist wouldn’t be so lazy and give a more accurate description of this chronic illness.

    • Hi Gergy,

      What worries me is that ME charities seem have embraced this without question, and that’s a bit scary. OK, I did the same thing initially, but a little thought showed up the holes in the idea. It’s certainly a promising line of research, but a lot more is needed. And I’m always wary of researchers who go straight to the press, as these guys seem to have done. I’d view it with a less jaundiced eye if they’d gone through the proper channels and submitted it to the normal peer-review process. That they appear not to have done (I can’t find it), suggests they’re not confident it holds water. Which, for me, it doesn’t – not as it stands.

      To address your last point – ME doesn’t exist in the UK, it’s always CFS. I agree that it’s wrong but the Mail – for a wonder – is actually correct.

      The problem is that in the late 80s – early 90s the medical community in the UK latched onto the US definition of CFS, which was exactly the same as our definition of ME at that time, but they cherry-picked the symptomology, focusing mainly on fatigue to the exclusion of almost everything else (especially pain), thus we have UK CFS which most people with ME are saddled with, but it’s NOT ME!

      I eventually got my ME properly diagnosed after a decade of purgatory, and in discussions with the doctors, and in the follow-up research questionnaires, it was always referred to as ME, but my official diagnosis, according to their letter to my GP, is CFS!

      I’m not convinced, either, that Big Pharma will plough money into a cure. Yes, there are a lot of people, worldwide, with ME, but once they’re cured – if a cure ever comes – I don’t think there are enough new cases coming along to make a drug profitable in the long term.

      A vaccine might be nice, but would do nothing for the millions already affected. And, of course, there’ll be a new cause along very soon – there always is! As I said, it’s not too long ago that the cause was claimed to be fluoride in the water supply.

      Ron.

  3. I think you make an excellent point that retrovirals won’t work for those of us who only have the antibodies. However, let’s look at the bigger picture. A possible diagnostic test. Acceptance, acknowledgement by friends, family, and the medical community.
    There will be an explosion of physiological research into the disease, and research into treatments for ME/CFS.
    It is already being hailed as the early days of HIV. Yes, some of us may be casualties of it being too late for us, but in the big picture, there will be generations who come after us who won’t have to hide this disease, who will have a test, and treatment.
    The overall picture matters here more than any one of individual.

    • Thing is, Andrea, all we have is some promising research – not the Holy Grail of ME/CFS. Let’s not make more of it than it actually is. Apologies, btw, for any typos I’ve missed – it’s a bad day.

      It is already being hailed as the early days of HIV.

      And that was precisely my point. It’s way to early for claims like that. If this research, which was based on an absurdly tiny test population (given the huge number of available ME/CFS sufferers), can be replicated on a much larger scale – several thousand ME/CFS sufferers from around the world, to give as wide a spread as possible (to make sure this isn’t a localised phenomenon), and by a different team (independent verification is vital) – then we will have cause for optimism. At the moment we most certainly do not, not on the scale I’m seeing it, anyway.

      This is a snippet from the WPI article:-

      “We now have evidence that a retrovirus named XMRV is frequently present in the blood of patients with CFS. This discovery could be a
      major step in the discovery of vital treatment options for millions of patients,” said Judy Mikovits, Ph.D., director of research for WPI
      and leader of the team that discovered this association. Researchers cautioned however, that this finding shows there is an association
      between XMRV and CFS but does not prove that XMRV causes CFS.

      Even the damned researchers are urging caution. XMRV has been found in prostate cancer and now ME/CFS. With further research this thing may prove to be so common in proves nothing. The point is WE JUST DON’T KNOW YET.

      This is a promising line of enquiry which needs pursuing rigorously – assuming the funding is available. But, as things stand, that’s ALL it is. What follows is the text of the WPI article in Science magazine (and researchers going straight to a magazine, and hence to the press, rather than through the peer-review system always worries me). As it’s in the public domain already, I don’t believe there are any copyright issues. Note, throughout, their careful choice of words,- these people know EXACTLY what they’ve got – it’s a nugget, not the mother-lode:-

      WPI RESEARCHERS DISCOVER RETROVIRAL LINK TO CHRONIC FATIGUE SYNDROME

      Scientists have discovered a potential retroviral link to chronic fatigue syndrome, known as CFS or ME, a debilitating disease that affects
      millions of people in the United States. Researchers from the Whittemore Peterson Institute (WPI), located at the University of
      Nevada, Reno, the National Cancer Institute (NCI), part of the National Institutes of Health, and the Cleveland Clinic, report this
      finding online Oct. 8, 2009, issue of Science.

      “We now have evidence that a retrovirus named XMRV is frequently present in the blood of patients with CFS. This discovery could be a
      major step in the discovery of vital treatment options for millions of patients,” said Judy Mikovits, Ph.D., director of research for WPI
      and leader of the team that discovered this association. Researchers cautioned however, that this finding shows there is an association
      between XMRV and CFS but does not prove that XMRV causes CFS.

      The scientists provide a new hypothesis for a retrovirus link with CFS. The virus, XMRV, was first identified by Robert H. Silverman,
      Ph.D., professor in the Department of Cancer Biology at the Cleveland Clinic Lerner Research Institute, in men who had a specific immune
      system defect that reduced their ability to fight viral infections.

      “The discovery of XMRV in two major diseases, prostate cancer and now chronic fatigue syndrome, is very exciting. If cause-and-effect is
      established, there would be a new opportunity for prevention and treatment of these diseases,” said Silverman, a co-author on the CFS paper.

      Commonality of an immune system defect in patients with CFS and prostate cancer led researchers to look for the virus in their blood
      samples. In this study, WPI scientists identified XMRV in the blood of 68 of 101 (67 percent) CFS patients. In contrast, they found that
      eight of 218 healthy people (3.7 percent) contained XMRV DNA. The research team not only found that blood cells contained XMRV but also
      expressed XMRV proteins at high levels and produced infectious viral particles. A clinically validated test to detect XMRV antibodies in
      patients’ plasma is currently under development.

      These results were also supported by the observation of retrovirus particles in patient samples when examined using transmission
      electron microscopy. The data demonstrate the first direct isolation of infectious XMRV from humans.

      “These compelling data allow the development of a hypothesis concerning a cause of this complex and misunderstood disease, since
      retroviruses are a known cause of neurodegenerative diseases and cancer in man,” said Francis Ruscetti, Ph.D., Laboratory of
      Experimental Immunology, NCI.

      Retroviruses like XMRV have also been shown to activate a number of other latent viruses. This could explain why so many different
      viruses, such as Epstein-Barr virus, which was causally linked to Burkitt’s and other lymphomas in the 1970s, have been associated with
      CFS. It is important to note that retroviruses, like XMRV, are not airborne.

      “The scientific evidence that a retrovirus is implicated in CFS opens a new world of possibilities for so many people,” said Annette
      Whittemore, founder and president of WPI and mother of a CFS patient. “Scientists can now begin the important work of translating
      this discovery into medical care for individuals with XMRV related diseases.”

      Dan Peterson, M.D., medical director of WPI added, “Patients with CFS deal with a myriad of health issues as their quality of life
      declines. I’m excited about the possibility of providing patients, who are positive for XMRV, a definitive diagnosis, and hopefully very
      soon, a range of effective treatments options.”

      The Whittemore Peterson Institute for Neuro Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with
      illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in lifelong
      disease and disability. http://www.wpinstitute.org.

      From U.S. Department of Health and Human Services
      NATIONAL INSTITUTES OF HEALTH NIH News
      National Cancer Institute (NCI)

      And let’s not lose sight of the previous “causes” of ME/CFS that have failed to pan out. At this stage we just don’t know if this will prove to be another. And we really need to know what the XMRV vector is – how is it caught? They’ve said it’s not airborne, so how? In the UK alone, there are a quarter of a million people with ME/CFS – what common factor is there with them, never mind world-wide, which brought about infection? That seems not even to have been discussed. Of all the people with ME/CFS that I’ve known, none of us had anything at all in common – except ME/CFS, so what’s the link?

      People have only recently started poking XMRV with a sharp stick – we don’t know yet what hoops it’s going to jump through, where else it’s going to be found and by what vectors it’s transmitted. Wikipedia says “It has been suggested that XMRV could be sexually transmitted”. Might I suggest, with the same supporting evidence – i.e. bugger all – that this is bollocks. At least, that’s what I was going to say, and then I thought about my personal life.

      I’ve been disabled all my life (serious respiratory illness), long before ME/CFS came along to screw things up even more, and as a result my sexual activity was way below average, and unprotected sex not at all. Not through any shortcomings on my part, but there was a dearth of partners who didn’t mind me wheezing down their ear during sex! And I’m massively allergic to most perfumes and make-up products.

      However, in 1984 I got married, and sexual activity went through the roof. In 1985 I began to show the first symptoms of ME/CFS, and by the end of 1986 I was in a wheelchair, and by 1989 my marriage was over, my wife preferring to believe the doctors who refused to acknowledge that I was ill, rather than the evidence of her own eyes (bitter? oh yeah!). So maybe sex is a vector. That can be demonstrated, with a fair degree of accuracy, by measuring the occurrence of MC/CFS in celibate communities, compared to the world at large. It’s not infallible, as many people bonk their brains out before taking their vows, but it’s at least as good an indicator as XMRV is right now.

      However, we can’t even say for sure, at the moment, that XMRV is a marker for ME/CFS, never mind the cause of it. Much more research is needed before the end of the road is in sight for even a diagnostic test. So please, let’s keep a sense of perspective, people, and not go off half-cocked – let’s just wait and see what happens. And let’s put all talk of a cure on the back-burner, because in the current state of play, it’s absurd.

  4. You guys are striking the right note – caution – but perhaps a little too gloomily. And I have to immediately point out that “Science” is indeed a peer-reviewed journal and not a “magazine”. Although it’s called “Science Magazine” it is probably viewed as the most prestigious peer-reviewed journal, not exlusively devoted to medicine, in the world.
    This study was based on a very well-defined set of patients and is confined to the US. We urgently need replication ( or otherwise ) in a different country, and other studies using patients not associated with “outbreaks”. Having said all that, we’ve never had scientists of this calibre using the most up to date techniques looking at the illness. There’s a lot to be positive about. AZT has shown efficacy in the laboratory against XMRV, but as far as I know hasn’t been tested in humans. A paper from Robert Silverman ( I think ) from a few years ago had identified a novel compound which was specifically effective against XMRV – presumably that’s under development. Anti-retrovirals have side-effects, particularly over the long term, but would you rather have nothing? The fact that XMRV is classed as a “simple” retrovirus, unlike HIV, is cause for optimism on the treatment front. This is assuming that XMRV plays a causative role – direct or otherwise – in the illness. Time will tell, but at last we have scientists of the highest calibre doing objective biological research and achieving promising early results. Smile…cautiously!

    • Gloomy? Not at all – just realistic (those of us who have had ME/CFS for a long time have been here before – extremely promising research that comes to nothing).

      What we have is a retrovirus which MIGHT turn out to be a marker for ME/CFS, which would be an invaluable diagnostic aid, but so far even that isn’t certain – even the WPI people repeatedly urge caution – there’s a long way yet to go. And even if the WPI findings are verified, and we DO have a marker, that’s a universe away from a cure.

      The problem with this initial research – and that’s all it is so far – is that the test population was tiny. The results are interesting, and they merit far more in-depth research with – as I said -a very much larger test population which will return statistically signficant results. Also, testing needs to take into account the fact that not everyone diagnosed with ME/CFS actually has it https://ronsrants.wordpress.com/2009/10/17/more-thoughts-on-xmrv/ as that will distort any findings.

  5. Hi Ron. Thanks for that speedy response.
    I’ve been here before too, as I’ve been ill for 15 years next month. You’re absolutely right to be cautious for exactly the reasons you state. If you want to be even more worried, take a look at this http://www.retrovirology.com/content/6/1/92. There is something problematic about XMRV. Two reputable studies from the USA have found evidence ( differing evidence too ) for XMRV involvement in prostate cancer, yet the Germans have found zero – absolutely nothing. Is there a geographic issue with XMRV? Could be. I understand samples may be being tested in London ( for CFS ) and we must hope that those results give us some indication as to the scientific truth of the matter. Another oddity is that the recent prostate study in the US and Mikovits’ CFS paper both found no association with the RNaseL gene – the very supposed “link” which got the WPI looking at XMRV in the first place. Perhaps this only proves that XMRV is an elusive beast. There are suggestions from sources who should know that the WPI have found a way to release XMRV from its “dormant” state in order to detect it properly.
    I think the word “cure” should be banned at present. The word “treatment” is very much on the cards, however. At the simplest level – and this is quite possible – we would be required to take a cocktail of anti-retrovirals for the rest of our lives. XMRV, if it is behaving in a similar manner to HIV, would remain in our bodies for life, and you would simply be suppressing it to an extent where you would be virtually “healthy” in all other respects.
    I can’t help wondering if something else isn’t going on. XMRV may well be behaving in a very unusual manner in CFS, and this might make it either easier or harder to treat. Genetic predisposition will almost certainly play a role. Judy Mikovits has already said some interesting things on various subjects http://www.youtube.com/watch?v=b3OZdvSDdoA and http://www.youtube.com/watch?v=GCKtoOcM_IM The virus is “stress-responsive”. If that stands up to scrutiny – wow.
    And the point about diagnosis is a major one indeed. Many people have been given a “CFS” diagnosis – particulalry if doctors have been unwise enough to use CDC criteria – who have other illnesses. They will not be XMRV positive in any scenario.
    Interesting times…..

    • Hi Kevin,

      Is there a geographic issue with XMRV?

      That’s the point I made in my first post – we need to establish whether WPI are finding a local effect by drawing the next test population form a very wide area. Shoulkd be easy enough – all they need is the blood, not the actual people.

      And the point about diagnosis is a major one indeed. Many people have been given a “CFS” diagnosis – particulalry if doctors have been unwise enough to use CDC criteria – who have other illnesses. They will not be XMRV positive in any scenario.

      20-odd years ago, the CDC definition was the gold standard for ME/CFS – until the British medical profession cherry-picked the bits they liked, ignored most of it, and invented a completely bollocks version of CFS.

      Now, though, the CDC is busy revising it’s CFS material, mostly in favour of a psychological basis, from what I’ve heard, probably in the light of the WHO changing their mind about it – which most of the ME/CFS community ignored for years https://ronsrants.wordpress.com/2009/03/18/mecfs-the-who-what-has-gone-wrong/ and https://ronsrants.wordpress.com/2009/05/02/the-me-who-snafu-continues-unabated/

      Ron.

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