Where next for chronic fatigue after XMRV a bust

Nature News has an excellent piece reviewing the state of play after the first reports of the XMRV virus in people with chronic fatigue syndrome (CFS) have been put in doubt both by a string of failed replications and evidence of contamination in the original research samples.

Chronic fatigue syndrome or CFS is associated with diffuse body pain, persistent tiredness and loss of concentration and is controversial owing to the fact that some patient groups are determined to identify a ‘physical cause’ while many professionals understand and successfully treat it as having a significant ‘psychological’ component.

We covered the details of the intense debate last year, but the argument was heated further recently when first reports of a virus in some CFS patients have been shown to be extremely unlikely.

The hypothesis that the retrovirus has a role in chronic fatigue syndrome (CFS) has been dealt a serious blow by the publication of two damning papers in Science and an “expression of concern” from the journal’s editor over the original report that identified signs of XMRV infection in two-thirds of people with the condition but fewer than 4% of healthy people. The authors of that paper, led by Judy Mikovits at the Whittemore-Peterson Institute for Neuro-Immune Disease in Reno, Nevada, declined a request from Science to retract it, calling it “premature” in a statement.

“It’s a bust,” says Jonathan Stoye, a retrovirologist at the National Institute for Medical Research in London, part of the UK Medical Research Council (MRC), who was one of the fiercest critics of the association between XMRV and CFS. “People who are interested in this condition will have to move on.”

Yet scientists are not yet sure what the fallout will be for the future of research into CFS, also known as myalgic encephalomyelitis (ME)

The Nature News piece discusses where CFS research can go next now “XMRV’s 15 minutes of fame seem to be up” and whether this will reduce scientific interest in what is genuinely a debilitating condition.

Definitely worth a read.
 

Link to Nature news on ‘CFS: life after XMRV’ (via @edyong209).
Link to previous Mind Hacks post on roots of CFS controversy.

10 Comments

  1. ed
    Posted June 3, 2011 at 8:04 pm | Permalink

    what should happen is science, what is happening is politics. What does happen will say it all.

  2. Emmy
    Posted June 4, 2011 at 1:15 am | Permalink

    You have to wonder how many people can actually “have” an illness that is so poorly understood. It’s like fibromyalgia; the name has lost all its meaning. All those people most likey have *something*, but the label is too vague. Maybe they have a debilitating condition, others diagnosed with it (I’m one of them) actually just had a magnesium deficiency. I saw 4 doctors before I figured that out (on my own).

    The link to mitral valve prolapse, neurological issues and low fluid volume are, I think, compelling. I’d guess that many CFS sufferers probably have something more serious, but if someone has low blood pressure or low fluid volume, that could certainly cause exhaustion.

    http://www.mvprolapse.com/article_fatigue.html

    • Kelly Latta
      Posted June 6, 2011 at 5:43 pm | Permalink

      Kati,

      The reason the Nature News article is an excellent piece of journalism is because the journalist, Ewen Callaway, didn’t just run a press release and call it good as many do. He took the time to get comments from a number of points of view. You may remember his equally excellent profile of Dr. Mikovits some months ago.

      With the exception of Dr. Wessely’s incessant whining and victim posturing, the sources all said this is most likely an infectious disease; there needs to be more biomedical research and a focus on somatic biomarkers; and good scientists will not be deterred from studying ME/CFS because a minority of patients/non scientists lash out in frustration and disappointment.

      His point was XMRV is not the only issue with ME/CFS and he asked researchers where things need to go next.

      Are you truly opposed to researchers continuing to do biomedical research on the disease you have?

  3. Kati
    Posted June 4, 2011 at 4:10 am | Permalink

    this is one of the worst article for patients with ME/CFS. imagine being an HIV gay man in 1982, with kaposi sarcoma lesion all over?

    This is how stigmatized patients with Me/CFS are in 2011. Dr Mikovits and her team focused on looking for a pathogen because patents with MECFS have multiple viral reactivatons, just like AIDS, they have dysfunction of the natural killer cells which protect against pathogens and cancer cells in the body, they have a defect in RNASEL which is an antiviral pathway, amongst other things.

    We are labelled as lazy, overweight middle age women but men and children and skinny people get it too, and can be passed within family members. you could e next. No one is immune to it.

    we have been underfunded due to the stigma of the name chronic fatigue syndrome, and the UK treats it as a mental illness, so it is not surprising to us that Simon Wessley, Jonathan Stoye, the Wellcome Trust, and others have conflicts of interest for XMRV not to pan out. it is sall about greed and money and good science is left way behind. For those that were alive and old enough to understand the politics of science in the early 1980’s, the same thing happened to AIDS, delays and greed for honor.

    Please get educated on the hidtory of MECFS, read Osler’s Web, the book, by Hillary Johnson http://www.oslersweb.com.

    Kati, sick for 2.5 years

  4. Kelly Latta
    Posted June 4, 2011 at 8:32 pm | Permalink

    Ummm guys, I’m sure you are aware that there are psychosocial overlays on an individual basis in any organic disease – but it doesn’t make the disease a psychological one – regardless of what patients think.

    Many professionals also thought at one time that ulcers were caused by stress not bacteria; that MS was “hysterical paralysis” not demyelination of myelin sheaths; and the shaking in Parkinson’s Disease was caused by a frustrated wish to masturbate.

    If you check PubMed, you know that official library type place where they keep all the scientific literature, you will find around 4,000 peer-reviewed papers on the biomedical aspects of CFS according to Dr. Anthony Komaroff.

    This is the same Dr. Komaroff who was interviewed in Mr. Callaway’s recent article “Chronic Fatigue Syndrome: Life After XMRV and who said, “…beyond XMRV there’s evidence of an underlying biological process and infectious triggers that we need to understand better.”

    And just for the record, he’s a professional.

    Just so you are clear, like any other disease, patients are generally the ones studied and the biomedical and/or behavioral professionals are usually the ones doing the studying.

    While scientists are the professionals studying both the biomedical basis of CFS and possible psychosocial overlays, patients are the experts on their own experience.

    Just sayin’. This doesn’t mean there aren’t psychosocial overlays, but they are no different than any other organic diseases.

    Emmy – mitral valve prolapse may cause undifferentiated fatigue, but CFS has the unique symptom of post exertional exhaustion lasting 24-hours or longer; unrelieved by rest; and upon minimal exertion. Without that you don’t have CFS. Persistent tiredness isn’t listed in any diagnostic definition for CFS, but post exertional malaise is.

    • Emmy
      Posted June 6, 2011 at 8:12 pm | Permalink

      Kelly, thanks for the information, maybe I wasn’t clear but my point was that short of knowing what causes CFS (and short of knowing what it is), the general public and / or unexperienced doctors may look at someone with MVP and lump in the symptoms as part of chronic fatigue syndrome.

      I don’t know that you could say for sure that MVP or any cluster of illnesses does **not** have the post-exertional exhaustion to which you refer, though.

  5. Owen
    Posted June 7, 2011 at 5:49 pm | Permalink

    Excellent comments by Kelly Latta, making. Would that the authors of the original post showed evidence of the same real interest in their subject.

  6. Joss
    Posted June 14, 2011 at 11:27 pm | Permalink

    In non of the exisiting clinical criteria for ME/CFS does it list ‘diffuse muscle pain’ and ‘persistent tiredness’ as symptoms.

    It is really trivialising to try to sum up the symptomology of the disorder in that way and it is that kind of misrepresentation that continues to hold back funding for bio-medical research and better public understanding of the illness.

    I notice you have a piece about patients suffering from the delusion of being shrinks – what about psychiatrists that suffer from a narcissitic need to take over areas of medicine that would be better left to physiologists – the addition of Complex Somatic Symptom Disorder to the new DSM is a case in point and could be potentially disastorous for those with ME/CFS.

    There was once a very specific idea of what ME was – it is not the fault of patients if the definition has been watered down so that it does now include those who are tired all the time or a bit achy.

    You need to check out the original sources and learn from the history. When McEverdy et al redefined the Royal Free outbreak of ME as ‘mass hysteria’ they did everyone a disservice.

    Also, you need to read the PACE trail results properly – despite the SMC press release and following news articles the results do not show that GET and CBT sure people – if after a year of such intensive help you call being able to walk a couple of extra meters a cure then god help us all.

    They also mislead people in their results and failed to provide information on the outcome measures they initially listed in the protocol.

  7. Rosa
    Posted June 20, 2011 at 9:28 pm | Permalink

    I am glad to see that people have jumped on this post before I came across it; I was diagnosed with ME/CFS about 13 years ago and have hardly been able to leave the house since. I am 24.

    I want to make two points:

    First of all, “chronic fatigue” is not at all the same as chronic fatigue syndrome. It is like saying achy joints is the same as arthritis or forgetfulness is the same as dementia. You can have chronic fatigue for a variety of reasons, including because of depression or other mental health issues. But chronic fatigue is not CFS, something I think is worth pointing out after your strikingly dismissive description of it.

    (I respect that you have to keep the description short, but here is a better one if your or any of your readers are interested:

    http://www.meresearch.org.uk/information/whatisme.html)

    Secondly, ME and CFS both have different definitions and diagnostic criteria. Not everyone who meets the criteria for CFS will do so for ME because the definition for CFS is much looser and has a slightly different focus. By definition ME is a “disease of the nervous system” and by definition CFS is “an ill-defined condition.” One emphasises fatigue, the other a range of symptoms and neurological aspects. Given the different categories the illness jumps in and out of, not to mention the lack well informed doctors, it is not surprising that someone with low blood pressure or a B12 deficiency could be diagnosed with ME or CFS.

    (The terms ME/CFS and CFS/ME are a compromise while better definitions and a better understanding is reached:

    http://mecfslegal.110mb.com/index.php?p=1_14_What-is-ME-CFS-)

    With that in mind, it is supremely arrogant and ignorant to dismiss this debate and flatly state that CFS/ME “is controversial owing to the fact that some patient groups are determined to identify a ‘physical cause’ while many professionals understand and successfully treat it as having a significant ‘psychological’ component.”

    Where to start!

    “Determined to identify a ‘physical cause'” as if what? As if there isn’t any evidence for a physical cause?

    If you want to know about the evidence for viruses you should look at the work Stanford University is doing: http://chronicfatigue.stanford.edu/overview/

    I recommend the lecture of Dr. Jose Montoya has posted to the Stanford YouTube page.

    What concerns me most about what you said though were the phrases “understand and successfully treat.” Here in the UK we have ME/CFS clinics, one of which I have attended for years. If ME/CFS is “understood” and can be “successfully treated” then why don’t ME/CFS clinics broach the treatment or this understanding with me? They never have. If I talk to ANY of the professionals working there they make it clear that they believe ME is physical. Not mental. Physical.

    If you are right that ME is “understood” as psychological then why haven’t ANY of my clinicians shared this “understanding” or treatment with me? Is it a secret? Why do they tell me it is physical if they understand it is mental? Why would they lie? Or is humouring me in my delusion part of the treatment…?

    If it is, it’s not working.

    Finally, I hope people continue to speak up. This is a well written article of the stigma people with a diagnosis of ME/CFS face, and I hope you will not add to that burden in future posts:

    http://www.psychologytoday.com/blog/turning-straw-gold/201104/the-stigma-chronic-fatigue-syndrome

    • Posted June 28, 2011 at 1:58 am | Permalink

      excellent comment! I have had a CFS/ME since 1989, after a bout of mononeucleosis that seemingly never went away; FM diagnosis followed about 2 years later. My internist did everything possible to rule out all other probable causes – at least, those that could be found via testing and consults with specialists.

      My viral symptoms – of which I had a ton – seemed to resolve (well, go away) after about 7-8 years. (I’m a bit foggy on the exact timeline; it’s been a while.) but it also seems that there has been a low-level “lurking” CFS component to my FM and FM flares.

      No doubt these problems are caused by discrete – and as yet unidentified – conditions, and I sincerely hope that current and future medical research leads to an understanding of causes as well as means to cure – or at least alleviate – symptoms for those of us who suffer with these diseases.

      In the meantime, it really <i.does help to clarify terms – CFS/ME is *not* the same thing as feeling chronically fatigued.

      for anyone who does feel persistent fatigue and/or other symptoms that might be due to CFS/ME: please see your doctor, get a 2nd opinion – do what you have to do to get help! It can be an intensely frustrating process at times (especially when you’re feeling awful most-all of the time), but it is worth the effort.

      Ditto for those with FM symptoms.


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