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XMRV Chronic Fatigue Syndrome Update

Sometimes science works the way it’s supposed to. Scientists make hypotheses, test them by gathering preliminary evidence, and then argue about the inevitable conflicting results. Eventually better and better evidence is gathered until a consensus is achieved. Actually, I think that is how science usually works, it’s just that most questions in science are narrow and technical and don’t command media or public attention. Those that do tend to be the more enduring controversies or where a particular special interest (ideological, social, corporate, etc,) is involved.

In medicine scientific controversies may take on a life of their own, or become manufactured controversies (manufactroversies) that endure long past any genuine scientific debate. Such false controversies are often driven by patient groups who feel they are not being treated fairly or honestly, or by practitioners who do not want to give up on their favorite (lucrative) modality. This leads to a disconnect between the scientific controversy and the public controversy – a frequent theme on SBM.

I am happy to report that one such controversy has taken a turn for the good – a recent study has provided fairly definitive evidence that chronic fatigue syndrome (CFS) is not associated with either the XMRV or the pMLV viruses. The study was a consensus trial with both sides in the controversy collaborating to address all the criticisms of the earlier conflicting studies.

Background on XMRV

Chronic fatigue syndrome (CFS) is an enigmatic disorder. The primary symptom is debilitating fatigue that does not resolve with rest. Fatigue, however, is a very non-specific symptom, meaning that it can potentially result from many underlying causes. Anything that saps the energy our body uses to function will cause fatigue. In part CFS is a diagnosis of exclusion – it is based upon the presence of fatigue in the absence of any identifiable underlying cause. Therefore not everyone with chronic fatigue has CFS.

The non-specific nature of the clinical syndrome also frustrates our attempts to find the underlying cause or causes (it may, in fact, be many diseases all with a similar clinical presentation). So many things can potentially cause chronic fatigue – where do we begin. However, a chronic viral infection has long been suspected as a likely cause, at least in some cases.

An initial study (Lombardi et al published in Science in 2009) found a potential association between CFS and a retrovirus called XMRV (xenotropic murine leukemia virus-related virus). This has led some desperate patients with CFS to take anti-retroviral drugs (used mostly to treat HIV – another retrovirus) off label in order to treat their CFS. But this study, while intriguing, was considered preliminary. A second study of a related virus published in the Proceedings of the National Academy of Sciences (PNAS) in 2010 supported the association between CFS and retroviral infection.

Many patients with CFS were delighted by these findings. They seemed to confirm that their mysterious ailment was legitimate and also held out the promise of treatment.

Subsequent studies, however, failed to reproduce the findings. A larger, more rigorous and comprehensive study published in 2011 found no association at all between XMRV and CFS.

They report:

We collected blood samples from 100 CFS patients and 200 self-reported healthy volunteers from the same geographical area. We analyzed these in a blinded manner using molecular, serological and viral replication assays. We also analyzed samples from patients in the original study that reported XMRV in CFS. We did not find XMRV or related MLVs, either as viral sequences or infectious virus, nor did we find antibodies to these viruses in any of the patient samples, including those from the original study. We show that at least some of the discrepancy with previous studies is due to the presence of trace amounts of mouse DNA in the Taq polymerase enzymes used in these previous studies.

Other negative studies also were published.  They further identified possible evidence of contamination that could have caused the prior study to be a false positive.

Proponents of the XMRV hypothesis, however, were not impressed. They essentially dismissed the findings of this later study by saying that the wrong technique was used to identify XMRV.

To complicate matters further, the lead researcher in the original study, Dr. Judy Mikovits, was briefly arrested in November 2011, after she was fired from her institute, on the charge that she stole computer data and lab notebooks.  The charges were later dismissed, but the episode solidified Mikovits as a martyr in the eyes of hopeful patients who did not want to give up on XMRV.

Eventually the weight of negative replications reached a critical point and both Science and PNAS retracted the original two positive studies within a week of each other. In the PNAS retraction the authors wrote:

“It is our current view that the association of murine gamma retroviruses with C.F.S. has not withstood the test of time or of independent verification and that this association is now tenuous.”

Prior to the retraction, however, the current consensus trial was already underway. That study, as was suspected, provides the final nail in the XMRV CFS hypothesis. The researchers report:

 Here we report blinded analysis of peripheral blood from a rigorously characterized, geographically diverse population of 147 patients with CFS/ME and 146 healthy subjects by the investigators describing the original association. This analysis reveals no evidence of either XMRV or pMLV infection.

The authors of this study include Mikovitz and Alter (an author on the PNAS study), as well as researchers who did not confirm the association. Mikovitz hoped to replicate her original findings, but like a good researcher she let the scientific chips fall where they may. The study found zero incidence of XMRV or pMLV in the CFS patients studied.

Conclusion

The XMRV hypothesis is now scientifically dead and buried, the latest study really serving as a memorial service for an already-dead hypothesis. Because researchers from both sides of the controversy were involved in designing a truly rigorous study that everyone could agree upon, there really is no wiggle room left for those who wish to support the XMRV hypothesis.

There are, of course, multiple lessons we can take from this episode. The first (and a very common theme on SBM) is that preliminary evidence is preliminary. Most of it will not pan out. This controversy resolved itself more quickly than most, but it still took several years. In medicine this means (as difficult as it may be) that patients and practitioners need to be cautious before they jump on preliminary findings.

Second – it is possible for scientists on opposite sides of a controversy to come together and resolve their differences with better evidence.

When this happens, then it is absolutely critical that the scientists on the “losing” side accept the results and make very clear and definitive statements to the public about their acceptance. Those who are invested in the failed hypothesis will be looking for any sign of dissent, any indication that there is a cover up or conspiracy. They will cling to any hint that there is something fishy going on, and they shouldn’t be encouraged by careless scientists.

Sometimes the scientists on the disproved side don’t give up, they allow proponents of their failed hypothesis to rally around them and choose to continue their career as a fringe crank championing a lost cause, rather than the honest author of a failed hypothesis.

I am glad to report that this does not appear to be the case with the XMRV story. It remains to be seen how the CFS community will respond.

Posted in: Science and Medicine

Leave a Comment (175) ↓

175 thoughts on “XMRV Chronic Fatigue Syndrome Update

  1. WilliamLawrenceUtridge says:

    The delightfully profane/profoundly foul-mouthed virologist ERV over at ScienceBlogs has a whole series of posts on the XMRV hypothesis. All her posts are very enjoyable IMO, except for the ones about her dog. I’m more of a cat person.

  2. CarolM says:

    Speaking of HIV, did anyone ever discover the cause of the the AIDS-without-HIV cases reported 20 years ago?
    I don’t hear much at all about HIV anymore except in the context of Africa.
    http://tinyurl.com/95nad9x

  3. Janet says:

    What a nice post–some good news for a change.

  4. Ok, so this virus that supposedly causes CFS does not exist. Correct?

  5. Harriet Hall says:

    I’m intrigued by the concept of a trial where researchers who initially got different results work together to reach a mutually agreeable consensus. This is science at its finest. Do you know of any other examples of this approach? Do you think CAM researchers could ever be persuaded to cooperate in similar efforts?

  6. windriven says:

    @SkepticalHealth

    I believe it would be more accurate to say that the virus exists but does not cause CFS.

  7. Kat says:

    I have been diagnosed with CFS and Fibromyalgia for years now and I am happy to see that the virus cause has been layed to rest. I know these are exclusionary diagnosis but I came to terms with the fact i may never have and answer so i have learned to take care of myself and eat well and live my life and not buy into the alternative treatments and i hope the ending of this controversy will encourage others in the CFS community to do the same.

  8. ZenMonkey says:

    “The primary symptom is debilitating fatigue that does not resolve with rest.”

    This is a common misconception. The defining symptom of ME/CFS is post-exertional malaise. This is a far more specific symptom than “fatigue,” and far more useful criteria for diagnosis have been developed on that basis. For example, the International Consensus Criteria for myalgic encephalomyelitis (ME), which may or may not be the same thing as CFS: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

    (As best as I understand the current thinking, people who meet the ICC have ME, while people who don’t retain the somewhat broader — though closely related — CFS, but this is very hotly debated.)

    And here is a link from the CFIDS Association of America, the country’s largest advocacy and research organization for the disease: http://www.research1st.com/2012/07/21/pem-webinar/

    On a personal note, I’m glad to see you framing these results as positive. There is some doom and gloom in the patient community — and some really unneeded piling-on by the media — that XMRV turned out to be unrelated to ME/CFS. The truth is, many if not most patients, and definitely most researchers, had long since moved on from XMRV to focus on more promising biomedical and pharmaceutical possibilities. It’s a relief, not a blow, to close the door on this very ugly chapter, which involved heartlessly scamming vulnerable patients with utterly useless XMRV tests not covered by insurance (including one lab affiliated with WPI, the organization where Mikovits originally worked), as well as patients being treated with dangerous retroviral medication on practically no evidence.

    Though Dr. Ian Lipkin saw fit to applaud Mikovits during the press conference announcing these results, she has proven herself to be a shady opportunist and a poor scientist. Before any reliable replication studies had been done, she was already presenting, among other places, at AUTISMONE alongside Andrew Wakefield, positing that XMRV might be implicated in the (nonexistent) link between vaccines and autism. I understand Dr. Hall’s admiration of Mikovits’s involvement in this study, but I for one will never trust that woman again.

    Joey Haban

  9. WilliamLawrenceUtridge says:

    CFS is a wastebasket diagnosis of exclusion that will, unarguably, be filled with the following:

    * patients whose true diagnoses were missed
    * patients with fatigue-causing pathologies that are not currently recognized
    * patients with psychogenic fatigue
    * patients who are faking

    Right now our ability to distinguish between these is essentially zero. Until we can, CFS will continue to be contested and patients will be unsatisfied.

  10. Harriet Hall says:

    @Zen Monkey,

    “I understand Dr. Hall’s admiration of Mikovits’s involvement in this study, but I for one will never trust that woman again.”

    I hope “that woman” refers to Mikovits rather than to me! :-)
    Whether you trust Mikovits or not is irrelevant: she didn’t affect the outcome of this new study and there is both scientific and PR value in having her reach a consensus with her opponents.

  11. Linda says:

    @WilliamLawrenceUtridge

    “CFS is a wastebasket diagnosis of exclusion that will, unarguably, be filled with the following:
    * patients whose true diagnoses were missed
    * patients with fatigue-causing pathologies that are not currently recognized
    * patients with psychogenic fatigue
    * patients who are faking”

    Correct. CFS will remain a wastebasket diagnosis until further biomarker/subgrouping studies are done (several underway).
    (I have some doubts about the last category of ‘fakers’, because there are not exactly many advantages attached to being diagnosed with a condition as controversial as ‘CFS’, on the contrary)

    Also, the categorization strongly depends on which CFS definition you’re using:

    This study was done in a well-defined *CFS – ME/CFS* patient group. All subjects met both the 1994 Fukuda criteria and 2003 Canadian consensus criteria (the most used definitions in biomedical research internationally), they had a viral prodrome prior to the onset of CFS, and other medical and psychiatric conditions that might cause fatigue were carefully excluded. .

    Psychiatrists on the other hand use their own overly broad definitions, like e.g. the Oxford criteria. Most studies showing (minor) benefits for CBT/GET therapy use these definitions. These are ‘chronic fatigue’ rather than CFS definitions, and are known to include more people with psychogenic fatigue.

    To give you an idea how wide these biomedical and psychiatric definitions of CFS are apart:
    * the prevalence of Fukuda CFS is about 0.2-0.4% of the population
    * the prevalence of Oxford ‘CFS’ is about 2.6% of the population.

    http://www.ncf-net.org/patents/pdf/Fukuda_Definition.pdf
    http://informahealthcare.com/doi/abs/10.1300/J092v11n01_02
    More definitions: http://en.wikipedia.org/wiki/Clinical_descriptions_of_chronic_fatigue_syndrome

  12. ZenMonkey says:

    @Harriet Hall, I realized after I wrote that comment that I had phrased it poorly! Of course I meant Mikovits. And I agree with you entirely, especially about the PR. I meant that in the future, I’ll automatically be extra-skeptical (which I guess amounts to “suspicious”) of any work she does.

    @WilliamLawrenceUtridge, there is very little currently “unarguable” about ME/CFS, except perhaps that the majority of patients who have been diagnosed and treated by competent doctors with a knowledge of the disease have true biomedical illness. You’ve left out possibly the largest controversy: the relationship between myalgic encephalomyelitis and chronic fatigue syndrome. The former has been much better defined in terms of identifying patients, and it is “unarguable” that such patients don’t fit into categories 1, 3, and 4. Two, if you noticed re: the XMRV thing, is still being researched, and there is plenty of argument there.

  13. I often wonder about these wastebasket diagnoses. People with them are often obese and/or on at least 1 psych med. Makes you wonder.

  14. geo says:

    @WilliamLawrenceUtridge

    While I agree with a lot of what you say (although as with Linda, do not thikn many would have much to gain by faking it), I’m not sure it need necessarily lead to this:

    “CFS will continue to be contested and patients will be unsatisfied.”

    So long as we’re honest about our current ignorance, and reasonable about it’s implications I think that much of the animosity and dissatisfaction which too often surrounds CFS can be avoided. What is dangerous is when people allow our lack of knowledge to be a reason for lower standards of care, quackery and prejudices. Explaining how little we know about this condition to a patient may not be terribly satisfying (and requires considerable time), but in the case of CFS, may be the best we can do. I think that many of the problems which surround CFS are currently best approached in moral and political terms, rather than medical. While so little in known about it, doctors have very little valuable expertise to contribute.

    @skepticalhealth:

    “I often wonder about these wastebasket diagnoses. People with them are often obese and/or on at least 1 psych med. Makes you wonder.”

    It makes me wonder about your wondering – as I said, the ignorance that surrounds this diagnosis can lead to a greater tolerance for one’s prejudices. Generally, it seems that uncertainty and disability are likely to lead to increases in anxiety,depression and related mental health problems – these sorts of confounding factors would need to be accounted for before much meaningful speculation could occur with regards to any relationship between CFS and emotional problems.

    There is very little research around CFS that I have much confidence in, but it seems that studies which have looked have fairly consistently found marginally lower BMIs and level of obesity in CFS patients than the general population (I think there was one that found otherwise, but from a long time ago). eg: This prospective study seemed to indicate that those who went on to suffer from CFS had lower BMIs prior to illness, and after diagnosis http://www.psychosomaticmedicine.org/content/70/4/488/T5.expansion.html

    Again, there are potential confounding factors, and different people seem to diagnose ‘CFS’ in different ways, so I wouldn’t assume that this work is accurate and meaningful, but it is perhaps a reminder of how one’s emotional associations with laziness, obesity, fatigue, suffering, mental illness and so on can lead one astray.

  15. Ignorance? How about evidence?

  16. ZenMonkey says:

    @SkepticalHealth: Perhaps if you did your homework on the current research into ME/CFS, you wouldn’t have to wonder. I was a competitive fencer and training three times a week to look fabulous in my wedding dress when I was diagnosed. I was finishing my master’s, just beginning my career as a college instructor, and taking zero psych meds. This is such a common type of story among ME/CFS patients that there has in fact been research into why so many people disabled by CFS were the “action-oriented” type before we became ill.

    Now consider such a patient after a decade of illness (I haven’t hit that awful milestone yet) that by definition makes it difficult or impossible to exercise, and the secondary depression that accompanies having lost almost everything in your life after becoming house- or bedbound. There’s your obese person on psych meds.

    Kindly stop perpetuating a 20th-century myth with your “wonderings.”

  17. Yeah, I always kind of doubt these people who claim to be so incredibly fatigued, and yet spend all day trolling the internet, writing ridiculously long posts about how difficult their life is. Just come to work with me one day :)

  18. If anyone ever feels exceedingly morbid, take a look at the ADHD forums. It’s a bunch of people on Adderall that hyperfocus on these ridiculously long, novel-length posts about their experiences.

  19. ZenMonkey says:

    Okay, so you’re not “SkepticalHealth,” you’re “I’veAlreadyMadeMyMindUpHealth.” Fine. I see you asking for evidence up above. Have you even bothered to read ANY of the links in the post or the comments? If you didn’t, then you are willfully ignorant. If you did, you’re a troll hiding behind anonymity. Either way, your contribution to this discussion is useless.

  20. elburto says:

    There are CFS patients insisting that it is XMRV ( some are saying they have “HIV-negative AIDS induced by it), and that the retractions are a part of a larger conspiracy.

    It doesn’t help that at least two of them are practising physicians who are endorsing the use of ARVs as treatment.

    I wouldn’t be surprised if a handful of parents have been persuaded that the nonexistent (in humans) virus is to blame for their child’s autism.

    Judy Mikovits should stick to hawking vitamins.

    WRT the “rewards” of faking illness, there are a few. Attention and sympathy from friends and relatives, and money (from welfare benefits) are the obvious ones.

    Some people have reward circuits that treat attention as if it were heroin. Just look at people with disorders like Munchausen’s and Munchausen’s by proxy. Medical attention especially, seems intoxicating to some individuals.

    Any disorder that cannot be ruled out through medical testing will attract a cohort of fakers.

    The “bad back” used to be a refuge for the workshy in my particular geographic area. It’s a diagnosis used by the drugseekers too. When I worked in rehab there were several users who’d successfully used claims of severe back pain, in order to get a regular supply of prescription opiates. Often the rehab was court-ordered due to a conviction for claiming fraudulent welfare payments associated with the “back pain”.

  21. ZenMonkey says:

    @elburto:

    “There are CFS patients insisting that it is XMRV ( some are saying they have “HIV-negative AIDS induced by it), and that the retractions are a part of a larger conspiracy.
    It doesn’t help that at least two of them are practising physicians who are endorsing the use of ARVs as treatment.”

    Yes. A lunatic fringe definitely developed during all this, mostly connected to hero worship of Mikovits not unlike the Wakefieldites. The special problem of dealing with them is that there *was*, in fact, a “conspiracy” in the past. (Not an unbiased source, but the info can be verified with a better search: http://phoenixrising.me/cdc-cfs-resource-center) The funds were indeed misappropriated, a fact that can’t be argued with, and many long-term patients remain permanently suspicious of the CDC. When you’re building one fake conspiracy theory on the back of another real one, it poses a real challenge — or hopeless situation.

    The difficulty during the saga is that, as usual, the extremists were the loudest, even going as far as to harass and threaten scientists doing work that contradicted Mikovits’s. This is what made news, and the rest of us living in rational land often got lumped together with them and the nutball reputation they were acquiring.

    “Any disorder that cannot be ruled out through medical testing will attract a cohort of fakers.”

    In only my personal experience, I haven’t heard of anyone who pulled off obtaining disability by claiming CFS, at least since 2006. When less was known about it earlier on, that seems more likely. I’m not at all saying it doesn’t happen; it’s just that the community doesn’t seem that concerned. But there’s also this: in the U.S., people who are legitimately disabled and unable to work due to ME/CFS often have to wait up to three or four years to go through the process, which almost invariably requires at least one appeal. It would be exhausting even for a healthy person to do. And given that more and more agencies are acknowledging the serious physical illness for what it is, such as the FDA declaring CFS to be a “disabling, life-threatening condition” (http://www.research1st.com/2012/09/13/fda-opens-dialogue/), it will only become more and more difficult for someone to successfully scam the system.

    (I have not yet attempted to get government disability assistance, because I dread experiencing what I’ve heard from quite a few very sick patients.)

  22. elburto says:

    I’ve heard that the US process is brutal and often costly.

    Here in the UK the waits are a lot shorter, and in the past people were able to play the system.

    The current fraud rate is only 0.3% now, but we also have our first right-wing government since 1997. They’ve decided that 20% of claimants need to be removed from the disability benefit rolls, and they’ve scrapped a number ed important schemes that were. actually helping disabled people to stay in work.

    So we currently have a system where people are found “fit for work” (not that there are any jobs) despite having heart failure or stage IV cancer. 37 people per week are dying while waiting for their appeal.

    As you can probably tell, our current Prime Minister is a big fan of the American welfare and health services.

    I’m just glad my conditions are well documented, easily verifiable, and severe.

    Oh, and Mikovits. and Wakefield in the same sentence? Nightmare fuel. I bumped into someone online who was a rabid fan of both of them. The respective retractions only deepened her support and admiration of the “medical martyrs”. I laughed it off, until I realised that she had kids. Oh, and she’s a nurse. I’m glad she’s not on my continent!

  23. In Vitro Infidelium says:

    I’m afraid Steve Novella is a little too sanguine about the wholesomeness of the Lipkin process and the circumstance that drove its necessity.

    To identify the sources of concern one can start with a very SBM issue – Priority Plausibility. M.E/CFS (or whatever nomenclature one chooses) has at least one significant epidemiological characteristic, that is, whatever diagnostic criteria have been applied to date, all produce a patient population that has a notable gender imbalance heavily weighted toward women. Studies range from a male to female ratio of 1:2 to 1:5. Nowhere in the foundational hypothesis of the Lombardi et al 2009 paper that served as the only source of relationship between M.E/CFS and XMRV, was there any attempt to apply prior plausibility to the question of the role of a single, apparently rare, retrovirus as causally involved in a condition which is characterised by a substantive gender differential.

    Of course such a gender differential may be explicable, even where an infective pathogen is involved, but if the pathogen is rare, and the patient population large and widely spread, either there must be a process of preferential exposure or (remarkably) preferential infection of one gender, or otherwise the pathogen must be ubiquitous or near ubiquitous. The results of Lombardi et al, clearly militated against ubiquity and demanded either preferential exposure or preferential infection if XMRV was truly to have a causal role in M.E/CFS. This preferentiality needed to be addressed – and patently was not addressed either by the authors, nor (and this should be of even more concern) by the peer reviewers of Science magazine. Fundamentally no one seems to have made any effort to match the research to what was already known about the medical condition that was supposedly under investigation.

    From there things only went downhill – a near panic ensued in the face of the XMRV/CFS mirage, over blood supply in turn leading to research costing millions of dollars being deemed necessary to ensure blood supply integrity. At the same time, the Institute where Mikovits was based, set about licensing tests for XMRV which were then sold to M.E/CFS patients who feared they may have a condition comparable to HIV. Then as the results multiple negative studies rolled in bringing the original research into question (but still without anyone questioning the plausibility of the original results or the relationship between M.E/CFS and XMRV) Mikovits and her co authors engaged in the most unconscionable defence of their work that at times bordered on the petulant.

    Lipkin undoubtedly achieved a great diplomatic outcome, allowing Mikovits and her co-authors an exit from a scientifically untenable position without losing face, but it would be very unfortunate if every time an intractably minded scientist holds onto an inadequate piece of research, $3 million were to have to be spent just to achieve a consensus that by all reason, should have been there from the outset. Such an outcome has been especially galling in the context of M.E/CFS which commands only a tiny fraction of the research funding and effort that should appropriately be committed to it, given the level of incapacity, disablement and economic loss the condition entails. The Lipkin study may be a cause for self congratulation with science – but M.E/CFS remains a serious illness and patients are no nearer getting meaningful help from science or medicine.

  24. bluedevilRA says:

    I’ve seen a few CFS patients and in my experience (dangerous words, I know) they are younger, healthy appearing and active. At least prior to the onset of their symptoms. I’m a big mental health advocate so I am not a fan of saying these patients are faking. Malingering should always be considered, but it is far down the differential. One of my mentors in neurology likes to say that anything the brain can do, the mind can do also. This is often the case with psych disorders like somatization and conversion. Perhaps CFS is somewhere on that spectrum of psych disorders that manifest with physical symptoms? I know antidepressants have been unsuccessfully tried in the past for CFS but I wonder if the newer SNRIs might be of some utility in these patients.

  25. Linda says:

    Really weird, some of the comments here.

    @Skepticalhealth should change his/her nickname, until he/she’s made him/herself familiar with the literature, which clearly refutes his/her bias.

    @In Vitro Infidelium is uncomfortable with the time and money spent on this research. But why? It is the ‘priority plausibility’ argument exactly which caused this never-seen effort in the scientific world.

    Therefore also, I think it is naive to blame it all on Mikovits. She stuck to her results far too long, like many researchers do, but eventually admitted she was wrong.

    We now have a patient community backing up and grateful about these definitive results. This should be applauded. This scenario is very different from the Wakefield/autism scenario.

    It also proves how not just the science in itself is important, but also how the science is communicated to the public. These researchers did an excellent job: superb science, and efficient communication of the results.

  26. WilliamLawrenceUtridge says:

    Correct. CFS will remain a wastebasket diagnosis until further biomarker/subgrouping studies are done (several underway).
    (I have some doubts about the last category of ‘fakers’, because there are not exactly many advantages attached to being diagnosed with a condition as controversial as ‘CFS’, on the contrary)

    In some cases it can get you on permanent disability. If you don’t want to work but don’t need much money to live – this is a solution. I’m not saying most, or even a lot of CFS diagnoses are due to this. It’s probably about as common as voter fraud. But there are certainly a couple.

    So long as we’re honest about our current ignorance, and reasonable about it’s implications I think that much of the animosity and dissatisfaction which too often surrounds CFS can be avoided.

    Meh, it’ll always bear some stigma – no visible sign of its occurence, with a wiff of mental illness and faking curling around it. Not to mention most patients are probably more than a little hostile and defensive about it (because there is no visible sign, and people think they’re lazy or faking). One of the most obnoxious people I’ve ever had to deal with on wikipedia was a CFS patient who never seemed too fatigued to write lengthy screeds. On the other hand, one of my friend’s mother has CFS and is absolutely delightful. Like everything, generalization breaks down when it comes to individuals.

  27. Harriet Hall says:

    Few if any people carrying the CFS label are malingerers.

    At least some of them are misdiagnosed and really have somatization disorder. That doesn’t mean their symptoms are imaginary. Somatization is a real disorder with several possible mechanisms: it may be the body’s defense against stress, or it may occur in people with heightened sensitivity to internal physical sensations, or it may be a physical concomitant of negative thoughts and overemphasized fears. See http://en.wikipedia.org/wiki/Somatization_disorder

    Throughout history we have always had a “wastebasket” diagnosis for people with unexplained symptoms: the name changes as fads change. A patient diagnosed with CFS today might have been diagnosed with hysteria or neurasthenia in the 19th or early 20th century, with lipotimia in Latin cultures, or in China with shenjingshuairuo – the depletion of qi and reduction of functioning in the wuzang. Neurasthenia was more prevalent in females and higher social classes.

    Medical fads come and go, and the spectrum of symptoms responds to cultural expectations. Women don’t faint as often today, and young girls don’t develop chlorosis.

    It remains to be seen if CFS falls on this historical spectrum of unexplained symptoms or if we will eventually find a more precise diagnosis and an identifiable cause for a subset of patients.

  28. daedalus2u says:

    I am surprised there was no mention of the forced (and I think heavy handed with insufficient discussion) retraction of the paper reporting the discovery of XMRV, not by the authors, but by the editors of the journal.

    http://www.plospathogens.org/article/info:doi/10.1371/journal.ppat.0020025

    There were no allegations or hints of fraud in this paper, it was the same researchers (plus some more) who went back, looked at all the archived samples and conclusively showed where XMRV actually came from.

    http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0044954

    I think that this retraction by the editors is a terrible idea and sets a terrible precedent. There was error in the first paper, but XMRV is a real virus, that can infect things. The way to correct errors in the scientific literature is to point the errors out and show new data that is correct. That is exactly what the authors did in their follow-up paper.

    If finding errors in a previous paper can get that paper retracted against your will, this editorial policy produces a tremendous incentive to not look for errors after a paper has been published.

    The editors are saying their new policy is to retract papers if the conclusion is wrong.

    “If a paper’s major conclusions are shown to be wrong we will retract the paper.”

    http://blogs.plos.org/speakingofmedicine/2012/09/25/the-role-of-retractions-in-correcting-the-scientific-literature/

    This is an absolutely terrible policy for a scientific journal. The conclusions of a scientific paper are the least important part of it. What is most important is the data and how the data was obtained (so the reliability of the data can be assessed). Anyone who understands the data can (and should) come to their own conclusions.

    The most important part of a scientific paper is the data, and if the data is wrong, then the paper should be retracted.

    If you don’t understand the data in a scientific paper sufficiently so as to be able to make your own conclusions, then you have no business reading the paper in the first place. You should be reading background material until you do have the background to understand it.

  29. mousethatroared says:

    WLU – “One of the most obnoxious people I’ve ever had to deal with on wikipedia was a CFS patient who never seemed too fatigued to write lengthy screeds.”

    Three names – Jean-Dominique Bauby, Christopher Hitchens and Dudley Clendinen. Apparently they won’t too fatigued to write at length either.

  30. Janet says:

    @zen monkey

    You sign one of your posts as Joey, but you refer in another to your wedding dress. Is Joey one of those unisex names?

    Don’t be so hard on Skeptical Health. He’s an MD and mostly makes excellent contributions to this blog. Sometimes he uses overly-“colorful” language or says something that can sound crass to the newer reader. He really, really, hates woo (as do I) and his haste may have made his comments here appear in a context that doesn’t reflect his overall view. I don’t mean to speak for him (I think he’s a him), just trying to get you to not overreact to him.

    I, for one, will read your links, because now that I’ve come back to this thread, I have become pretty confused about CFS and realize that I am guilty of forming my impressions of it from the few people I know who say they have it although they appear to carry on normal and even active lives. The three people I know happen to be overweight, take psych meds (off and on anyway), and dabble in all sorts of woo because “the doctors don’t help me”. But three is a lousy sample size, so I will do my homework henceforth.

  31. mousethatroared says:

    @Janet – I’m sorry to be disagreeable, but personally I would rates SH’s comments around 25% worthwhile and around 75% infantile trolling.

    Really trolling CFS patients? Give me a break.

    But I’ll give it a rest, now.

  32. ZenMonkey says:

    @elburto — Yes, I’ve heard of what’s been going on in the U.K. with Atos et al, and it’s horrendous. I’d say at the moment you guys have it worse than we do, since at least patients who are denied benefits aren’t then forced to work (and die a week later).

    @bluedevilRA — Many CFS patients are on different types of psych meds used off-label for pain and sleep issues. I recommend that Research 1st link I posted for current information on treatment.

    @Harriet Hall and others — No one has yet pointed out that there isn’t one level of disability for all ME/CFS patients. Some patients are in fact well enough to work. I was for a while. If you’ve seen “active” CFS patients, consider someone with stage 1 cancer versus stage 4. Therefore it’s better to assume the patient has a milder version of the illness than to assume they’re faking. (It’s also unfortunate to bring up the spectre of “medical fads” considering this one has been around for decades and today there is plenty of solid biomedical research about it, not just “qi” and so forth.)

    If you see me at the grocery store, if I’m not using my cane, you’d never know I was sick. I make a point of looking like everyone else doing their shopping, no matter how I’m feeling. You’d probably sneer when I went back to my car parked in a handicapped space. And then I drive home, fall asleep for four hours, and am sick for the rest of the night and possibly the next day. “Invisible illness” means you can make no assumptions based solely on what you’re looking at.

    It would be so nice to see an article/thread on SBM regarding ME/CFS that didn’t mostly focus on whether it exists at all. There are several “CFS communities”; one of the online ones comprises many patients who are rational, follow the research, work with their doctors, and have long histories of unquestionable physical illness perhaps even aside from ME/CFS. In terms of mental illness, while misdiagnosis absolutely does occur in both directions (CFS can mimic bipolar disorder, and vice versa), these truly ill patients are being done a misservice by constantly ignoring them and focusing on the exceptions.

    And I’ll quit leaving these novella-length (ha ha) comments now, but if I may, I’d like to share with you some thoughts about people with chronic illnesses who leave critical thinking behind: http://newly-nerfed.net/2010/06/22/bitten-and-shy/

    (And regarding “these people who are so fatigued yet are able to write etc. etc.” — seriously?? We are not 100% debilitated 100% of the time, and we also take medications to ease our symptoms as much as possible. That is really the most ridiculous “evidence” of someone’s fakery.)

    @Janet — If Skeptical Health is an MD, I pray for his patients. And I’m an atheist. (And also, yes, female; Joey is the nickname I’ve gone by since college.) His very first comment in this thread showed that he either didn’t read the post, was unable to comprehend the post, or was trolling, none of which command my respect of his opinion. I do really thank you, however, for being open to reading more about ME/CFS and possibly changing your views based on the evidence. Those people you describe *absolutely* exist — in fact I had a very similar conversation with another very good skeptic who had (quite reasonably given his experience) formed a prejudicial view based on those types, and subsequently changed it. There is spurious self-diagnosis based precisely on the misconceptions about ME/CFS, that it’s just a name for when you don’t feel good and the doctors don’t know why. This is why I am passionate about changing those views.

  33. @ZenMonkey, thank you for passing judgement on me solely because I am skeptical about the supposed disease process that you are so obsessed with having that you have created an entire blog for it. I appreciate that you were able to muster up the energy to sit at a keyboard and write a paragraph about me. I hope you can do something productive for the rest of the night instead of telling a bunch of strangers how “sick” you are.

  34. mousethatroared says:

    Oh – is someone trip trapping over your bridge SH?

  35. KAL says:

    Just for the factual record the correct spelling is Judy Mikovits. Don’t feel bad, the Lancet got it wrong as well.

    I apologize for not remembering who in the thread addressed the cost of Alter et al 2012, but as Dr. Lipkin stated, the bulk of the funding was tied up in recruiting a rigorously defined patient cohort and sample collection. In an interview with Dr. Vincent Racaniello, Dr. Lipkin stated that an additional 50 studies could be done using the samples collected.

    It probably wouldn’t hurt to restate the information that people with psychiatric disorders considered fatiguing were excluded from this study which may make it difficult to study these patients as having mental illness. Not sure how anti-depressants would help them other than if it were for pain control.

    @Skeptical health – I don’t have a horse in this race other than preferring facts over speculation, but you don’t seem to be very well informed regarding this disease, the research and appear to be more interested in defending your ignorance at all costs than being intellectually open to new factual information. And science is all about being open to new information – on all sides not just the one you disagree with.

    Bad mouthing someone else always reflects more on you than them. And deliberate ignorance/close mindedness and skepticism are not the same thing. Your mother should have taught you the first and your science professors (I assume you had some) should have taught you the second.

  36. In Vitro Infidelium says:

    @Linda.

    I certainly get the prize for weirdest typo: “Priority Plausibility”, should of course have been ‘prior plausibility’. But if you consider the notion of prior plausibity to be a problem, I wonder why you would consider SBM to anyway be a useful point of reference for medical research, maybe a more thorough reading of this site would help your understanding.

    Mikovits is by no means solely at fault – but she was the PI on a study that many researchers at the time questioned, but which still led to huge and unnecessary expense to ensure security of the blood supply. It is one thing to run into a crowded space and shout ‘fire’ if you have a genuine belief people are in danger, but when everyone around you is pointing out there’s not even any smoke, to keep shouting ‘fire’ might be considered irresponsible. The fact that those cleaning up the mess included someone who contribute to it, shouldn’t allow us to lose sight of the fact the mess could have been avoided if only a more rigorous approach to the science had been ensured at the outset.

    @bluedevilRA and (minor point) Janet

    Your charactisations of M.E/CFS sufferers seem to bear little resemblence to published research or to diagnostic criteria. Although diagnosis is made across all age ranges, there is a preponderance in the 45 -65 age range with a substantial gender differential in adults (less certain in children). Obesity would be an exclusionary condition in most diagnostic criteria sets. To shift M.E/CFS to a mental health default seems unjustified in the context of an SBM based discussion – what is the science that allows such a default ? The fact of onset later in life in the majority of cases, and the notable gender differential leads far more logically to suspicion of auto-immmune processes, at least in a large subset of patients.

    IVI

  37. bluedevilRA says:

    From UpToDate:

    “It is primarily a disorder of young to middle aged adults. CFS is about twice as common in women.” I don’t doubt that there are patients in the 45-65 range, but I don’t think that’s where peak incidence is.

    “Depression is a theme that has pervaded the CFS literature for years. It is a charged issue that patients prefer to dismiss because of the personal and societal stigma attached to psychiatric diagnoses. Two-thirds or more of patients with CFS meet existing psychiatric criteria for anxiety disorders, dysthymia, or depression. Even if this is not the underlying cause but rather a consequence of CFS, it should be aggressively treated so that the patient can better manage CFS.” Autoimmune diseases are more common in women, but so are many psychiatric illnesses. Mental illness is not a default. But when patients have a history of psychiatric problems (heck, even when they don’t) mental illness should always be a consideration. Is it neoplastic, vascular, infectious, autoimmune, degenerative, psychiatric? That’s how docs come up with a differential diagnosis.

    I just want to be clear. I said that I strongly believe CFS patients are NOT faking. I think malingering should always be considered for any disease process (particularly for patients presenting with unusual symptoms and no clear etiologies) but in most cases it is way down your differential. at the very bottom.

  38. @IVF,

    What is the science that precludes CFS from being a mental health disease? We can’t do a blood test for depression, and we certainly don’t blame depression on a virus, or on some other disease process. Why would you think CFS would be any different?

  39. pharmavixen says:

    In 26 years as a pharmacist I’ve seen many folks with CFS, and I’m surprised nobody has mentioned the connection between CFS and the other prominent functional disorders like irritable bowel syndrome and fibromyalgia. The research into possible somatic causes of these disorders is salient, but I’ve wondered for many years if we aren’t doing these patients a disservice by neglecting a link to possible psychiatric causes. Stress has enormous effects on our health that we haven’t fully elucidated, and in my experience (sorry about that) patients with functional disorders are obsessive, neurotic, frequently workaholic folks who set unrealistically high standards for themselves and worry about everything all the time.

    People with functional disorders aren’t faking; their distress is real. But IMV more research is needed on the physical effects of years and years and years of constant stress that these people inflict upon themselves.

  40. Harriet Hall says:

    Many patients diagnosed with CFS could just as well be diagnosed with somatization disorder. See my comment of 28 Sep 2012 at 1:07 pm.

  41. daedalus2u says:

    IVI is right, the post-exertional malaise is characteristic and diagnostic and is instrumentally measurable.

    http://www.ncbi.nlm.nih.gov/pubmed/10209352

    There are mental health aspects to CFS, as there are mental health aspects to all disorders and as there is physiology associated with all mental health.

    The problem with characterizing CFS as a “mental health” problem is that people have the false notion of a mind-body dichotomy. There is no “mind”, there is only the brain which is only run by physiology which is only chemistry which is only physics. When the physiology of the brain is messed up, then the properties of the brain are messed up, and the thinking/feeling/doing of the brain will be messed up too.

    CFS isn’t something that you can “snap yourself out of”, the way people try to “snap people out of” other mental health disorders. The idea of “snapping yourself out of” a mental health disorder is a pre-SBM treatment modality when people thought there really was a mind-body duality and before they had any other treatment modalities, other than blood letting.

    Blood letting actually might be a treatment modality that would help with CFS by temporarily reducing hemoglobin levels. Unfortunately because of the wrong “XMRV causes CFS” idea, people with CFS are not allowed to donate blood. If they were, I think donating a double unit of red cells would be better than donating a pint of whole blood.

    Dr Hall is correct, the somatization disorders are the end stage consequences of chronic stress. It is what happens when the stress pathways are activated and then not deactivated for a long enough period. During “stress”, the resources of physiology are allocated to cope with the stressor, and diverted away from healing and repair. Unless the resources of physiology get diverted back to healing and repair, healing and repair isn’t going to happen. The longer a period of stress goes on, the more difficult it is to switch physiology out of it.

  42. ZenMonkey says:

    Pharmavixen, patients diagnosed with ME/CFS MUST first have psychiatric and psychological causes eliminated. If they haven’t been, the doctor has possibly misdiagnosed. There is MORE than sufficient research into psychiatry and ME/CFS. It hasn’t been neglected at all. Patients with serious physical illnesses, with physical etiologies, frequently are, however. The canard that “you worked yourself into illness” does not apply here.

    I am usually such a fan of this site, its authors, and its commenters. I refer people here frequently. It’s a shame that on the subject of ME/CFS, commenters feel free to bring in their anecdotal evidence that supports their own decisions about what this illness is, and they are listened to more than patients who follow the science of their disease that they live with. I see constant requests from “SkepticalHealth” for research when there are plenty of links he isn’t bothering to read. I see no help whatsoever from Dr. Novella, and Dr. Hall continues to focus on somatization. The skeptical community is so backward when it comes to this illness, and SBM does nothing but reinforce old, damaging stereotypes. I’m both disappointed as a skeptic and disgusted as a patient.

  43. mousethatroared says:

    @PharmaVixon – I have an anxiety disorder. As a medical person, how do you suggest I stop “inflicting myself” with years and years of stress?

  44. Harriet Hall says:

    Do you deny that many patients who carry the CFS label could just as well carry the somatization label? I don’t deny that a subset of patients could have a physical disease with an as-yet unidentified cause. I’m waiting for better evidence. Dr. Crislip has proposed two patient populations, one with a post-infectious pattern and the other not. Lumping them together only impedes meaningful research. http://www.sciencebasedmedicine.org/index.php/chronic-fatigue-lots-of-speculation/

    I can remember when patients with ulcers were classified as having a psychosomatic disorder characterized by attitudes like “that really burns me” and “he makes me sick to my stomach.” Then we found Helicobacter.

    Skeptics and scientists are always ready to acknowledge convincing data. So far, the data for CFS continue to be controversial, the diagnosis remains poorly defined, and there is no reliable test for it. The skeptical community isn’t “backwards” – it’s just trying not to rush in and go beyond the evidence.

    I know about the research, but I’m also bothered by the historical parallels with now-obsolete “fashionable” diseases whose symptoms were largely culturally determined. The truth is out there, and time will tell. Meanwhile I’m doing my best to keep an open mind.

  45. geo says:

    @ Skepticalhealth: There’s nothing wrong with being sceptical about any particular proposed disease process for CFS (although I cannot see exactly where you have done this). However, given the ignorance, stigma and prejudice which surrounds this condition, it might be helpful if you were also sceptical about your own views. You decided to write publicly of your musings: “People with them are often obese and/or on at least 1 psych med. Makes you wonder.” Maybe it would have been better for you to have looked in to some of the research in this area first? (I posted a link to one set of results above). If someone was to say: “There’s a lot of talk of racial prejudice holding people back, but all the unemployed black people I meet just seem to be drug addicts. Makes you wonder” when the evidence showed that unemployed African-Americans were less likely to be drug users than unemployed white Americans, then a degree of criticism may be expected.

    Equally, before writing something like this: “Yeah, I always kind of doubt these people who claim to be so incredibly fatigued, and yet spend all day trolling the internet, writing ridiculously long posts about how difficult their life is. Just come to work with me one day :)”

    It could be worth you taking the time to think about how much energy writing a 200 word internet comment is likely to take, what sort of activities those who do suffer from debilitating fatigue are likely to be able to pursue, whether there are legitimate complaints to be made about the way in which CFS has been treated, and so on.

    Although, it is possible that actually your comment is a subtle and nuanced satire of the sort of thoughtless comment which is so often targeted towards those with health problems which are not well understood – I’ve never been very good at interpreting smilies, so I cannot tell.

  46. BillyJoe says:

    geo,

    Nope. SH is serious. He has a track record of depicting people with what he calls self inflicted disease as fat and lazy. And he is neither subtle nor nuanced about it.

  47. @geo, Oh wow, my skepticism about CFS is now being likened to racism. This is a horrible tactic that people use by trying to associate something that they don’t like hearing with something they know that most people don’t like hearing. Grow up.

    I’m perfectly fine with diagnosing someone with CFS as long as we accept the seemingly likely possibility that it is a mental health disorder. It surely isn’t any disease that people are “catching”, as if transmitted by a virus. A lot of research has looked into this and it’s empty. Given the strong association of CFS with depression, it surely seems likely that it is more of a somaticized mental disorder.

    Of course, people who either have been diagnosed or self-diagnosed with CFS will not be happy to hear this. They will want to find some cause of their CFS, because they’ll be “skeptical” that they have a mental disorder. They’ll continue to write novel length blog posts, liken peoples opinions to racism, and completely blow things out of proportion in an attempt to make people accept them as having “caught” CFS.

    @BJ:

    Yes. People who go to the store, buy liters of sugary soda, and eat horrible fattening food all day long are to blame for their obesity. To blame “society”, or “advertising” or anything of the sort is to baby and coddle a lazy person. People are responsible for their own actions.

  48. @myself

    It surely isn’t any disease that people are “catching”, as if transmitted by a virus.

    As evidenced by:

    PROPOSED ETIOLOGIES — Considerable effort has gone into investigating possible causes of CFS. Among the many possible precipitants, the ones that have been most thoroughly studied are viruses, immune dysfunction, endocrine-metabolic dysfunction, and neuropsychiatric factors.

    Infection — There has been intense interest in whether certain viruses could be responsible for causing CFS, including Epstein-Barr virus (EBV), xenotropic murine leukemia virus-related virus (XMRV), and others. None has been proven to cause CFS.

    Epstein-Barr virus — EBV received a great deal of attention in the mid-1980s as a possible etiologic agent for CFS. This hypothesis was based upon three observations. First, EBV persists for life and reactivates frequently, thereby affording the virus the biologic potential for chronic illness. Second, patients with CFS were often found to possess higher than expected titers of antibodies to EBV capsid and early antigens, or to lack antibodies to EBV nuclear antigens (EBNA), each suggestive of recent or active infection. Third, some patients clearly attributed the onset of their illness to a mononucleosis-like infection.

    However, later observations suggest that the proposed relation between EBV infection and CFS is not correct. The serologic profiles of patients with CFS are nonspecific [7,32]. One study, for example, found that EBV serologies were unable to distinguish between 15 patients with severe fatigue of unknown etiology for two months, and over 100 patients with less severe fatigue or completely healthy controls. In addition, most cases of CFS either evolve insidiously or follow influenza-like or gastroenteric-type illnesses rather than mononucleosis.

    Other viruses — In addition to EBV, a number of other viruses have been proposed as the cause of CFS. These include retroviruses, human herpesvirus type 6 (HHV-6), enteroviruses, coxsackie B virus, Ross river virus, and Borna disease virus [12].

    Some observations regarding these viruses have included the following:

    Antibodies to these and other viruses were initially found to be more prevalent in patients with CFS than in controls. Subsequent studies, however, revealed only higher titers or irreproducible results in these patients [32,33].
    Investigators in the United Kingdom reported detection of enteroviral RNA and proteins in the muscle tissue of patients with CFS who had pronounced myalgias [34].
    Another group reported detection of retroviral sequences of a virus related to human T-lymphotropic virus (HTLV) in patients with CFS using the polymerase chain reaction [35].
    However, neither of the last two reports could be confirmed in other laboratories [36]. In addition, a seroepidemiologic study from the CDC for over 40 different infectious agents failed to reveal an association with any particular organism [37]. Neither of two interferon-induced antiviral pathways was activated in patients with CFS [38].

    XMRV and MLV — DNA from the retrovirus xenotropic murine leukemia virus-related virus (XMRV) and related retroviruses, such as murine leukemia virus (MLV), was detected in the blood of some patients with CFS in two studies [10,11]. However, XMRV was not detected in the blood of patients with CFS in several other studies [39-42], including studies that used the same blood samples as the earlier studies in which XMRV was detected [43], or blood drawn from the same individuals who previously had positive results [44]. One of the original studies that reported the detection of XMRV in the blood of patients with CFS [10] was later partially retracted by the authors [45], and subsequently fully retracted by the editor of the journal in which it was published due to concerns about the validity of the results [46]. Soon after this full retraction occurred, the authors of the other original study [11] retracted their results as well [47].

    The most comprehensive investigation to date was a multilaboratory study in which blood was collected from 15 individuals previously reported to be XMRV- or MLV-positive, 14 of whom had CFS, and from 15 healthy donors previously determined to be negative for the viruses [44]. These samples were sent in a blinded fashion to nine laboratories that performed assays to detect XMRV and MLV nucleic acids, virus replication, and antibodies. Only two laboratories reported evidence of XMRV or MLV; both of these laboratories had detected XMRV or MLV DNA in earlier studies. However, replicate sample results in these laboratories showed disagreement and the rates of positivity were similar among CFS subjects and negative controls. The authors concluded that the available assays cannot reproducibly detect evidence of XMRV or MLV (by nucleic acid testing, serology, or culture) from blood samples of patients with CFS or healthy controls.

    Importantly, multiple studies have demonstrated that contamination of patient samples (with mouse genomic DNA), laboratory reagents (with MLV-encoding nucleic acids), and human tumor cell lines (with XMRV or related viruses) can lead to the detection of these retroviruses, suggesting that the earlier findings that showed an association between CFS and XMRV or MLV were caused by contamination [43,48-53]. One study demonstrated that XMRV was generated by the recombination of two proviruses during passaging of a human prostate cancer xenograft in mice [53]. In addition, a phylogenetic analysis of MLV sequences from samples that were collected longitudinally from CFS patients suggested that the MLV sequences were consistent with contamination rather than viral evolution [54].

    XMRV was not found in the blood of individuals with certain other conditions, such as HIV, hepatitis C, rheumatoid arthritis, or among solid organ or hematopoietic cell transplant recipients or in patients presenting for routine medical care [39,55]. There are conflicting reports about a possible association between XMRV and prostate cancer. (See “Risk factors for prostate cancer”, section on ‘XMRV virus’.)

    Immune dysfunction — There is evidence of immune differences in patients with CFS relative to healthy control subjects, but the pathogenetic importance of these changes is not thought to be significant [56-60]. These findings have led some to call CFS the chronic fatigue and immune dysfunction syndrome (CFIDS). Among the differences in immune markers seen in CFS are lower than normal levels of circulating immune complexes, reduced numbers of natural killer (NK) cells, depressed NK cell function, altered levels of immunoglobulins, elevated titers of antiviral antibodies (directed against measles, HHV-6, EBV, and cytomegalovirus), lower levels of autoantibodies, increased cell surface adhesion molecules, enhanced interferon activity, increased levels of interleukin-2, and altered CD4/CD8 ratios.

    These observations raise the possibility that some cases of CFS are associated with a chronic inflammatory process. In one report of 147 individuals with CFS, for example, a reduced CD8 suppressor cell population and increased activation markers (CD38, HLA-DR) on CD8 cells were found [56]. These immunologic indices were not found in 80 healthy controls or 43 patients with other diseases. Another study of 259 patients with CFS found higher CD4/CD8 T cell ratios compared with matched controls [58].

    It is important to appreciate, however, that the abnormalities noted in various studies have been diverse, modest, and in some cases conflicting. A true immune deficiency is not a feature of this syndrome, although there may be a mild immune dysregulation of uncertain pathogenetic importance. Furthermore, case-control studies have found no differences in white blood cell counts, immune complexes, complement, immunoglobulins, delayed hypersensitivity, allergic responses, natural killer cell function, cytokine levels, or proliferative responses to mitogens and antigens in patients with CFS compared with controls [61-63].

    Endocrine-metabolic dysfunction — Several metabolic abnormalities have been described in CFS, but their causal role is unclear. Low serum cortisol levels have been found in patients with CFS who met the CDC criteria; other data suggested chronic undersecretion of corticotropin-releasing hormone, perhaps as a reflection of an underlying neuroendocrine disorder [64]. There is also evidence suggesting that patients with CFS have increased serotoninergic activity in the central nervous system [65], and enhanced serum levels of insulin-like growth factor I [66].

    However, some of these changes are not specific for CFS since similar neuroendocrine abnormalities are seen in patients with fibromyalgia [67], other syndromes with atypical depressive features [68], and after an alteration in sleep pattern in otherwise healthy subjects [69]. Furthermore, some studies have not confirmed a defect in the pituitary-adrenal axis in patients with CFS [70].

    Neurally-mediated hypotension — One study suggested that neurally mediated hypotension might play an important role in CFS symptoms. In this report, 23 subjects with CFS underwent tilt table testing: 22 were found to have an abnormal test (compared with 4 of 14 unmatched controls) [71]. Those CFS patients with a positive test were treated with escalating doses of fludrocortisone, atenolol, and disopyramide; almost all reported complete or partial resolution of symptoms. In a subsequent study of 600 patients with CFS from the same investigators, 77 percent of patients were found to have an abnormal tilt table test [72]; however, no control group was mentioned.

    A group from Israel developed a hemodynamic instability score in association with tilt testing and found that patients with CFS had positive scores or were unable to complete the test due to changes in blood pressure or heart rate, while patients with other conditions, such as chronic fatigue that did not meet CFS definitions, fibromyalgia, neurally mediated syncope, familial hypertension and otherwise healthy subjects had negative scores [73]. The study was not blinded and control patients were not matched with CFS subjects.

    Although these results appear intriguing, these early studies were not placebo-controlled, blinded, or randomized. A study in 21 pairs of monozygotic twins, in which one of the set had CFS and one did not, found abnormal tilt tests in 19 percent of those with CFS and 19 percent of those without [74]. In addition, a preliminary blinded study of 20 individuals with CFS who had not undergone tilt table testing found that low dose fludrocortisone (0.1 to 0.2 mg) did not provide any benefit compared with placebo after six weeks of therapy [75]. Thus, the role of neurally-mediated hypotension in CFS is unclear.

    Depression — Depression is a theme that has pervaded the CFS literature for years. It is a charged issue that patients prefer to dismiss because of the personal and societal stigma attached to psychiatric diagnoses. Three studies verified that two-thirds or more of patients with CFS meet existing psychiatric criteria for anxiety disorders, dysthymia, or depression [76-78]. Among patients who develop viral illnesses, a subsequent mood disorder is predicted better by the psychiatric history preceding the infection, whereas fatigue correlates better with EBV infection and inversely with the patient’s premorbid level of physical fitness [79].

    Some interpret these findings as implying that the fatigue results from a psychiatric disorder; others argue that the psychiatric problems arise from the chronic fatigue and disability. It is reasonable to expect that a functioning, highly productive person who suddenly becomes an invalid might become depressed.

    A prospective study of patients with an acute viral type of illness found that a history of psychiatric morbidity, the patient’s belief about viruses as the cause of their complaints, and how the clinician reinforced those beliefs could conspire to predict chronic fatigue [80]. The infective symptoms predicted fatigue initially but not six months later, suggesting that CFS may be more related to premorbid characteristics of the patient and clinician behavior than to features of a precipitating viral illness.

    Even if depression is not the underlying cause but rather a consequence of CFS, it should be aggressively treated so that the patient can better manage CFS.

    Sleep disruption — Sleep disruption has been proposed as a possible cause of CFS. A small study showed that CFS patients had significant differences in polysomnographic findings and felt sleepier than controls after a night’s sleep [81]. CFS patients had less total sleep time, lower sleep efficiency, and less rapid eye movement sleep than controls. The findings in the CFS group could neither be attributed to diagnosable sleep disorders nor to fibromyalgia.

    Genetic studies — Data generated from 227 patients with CFS who underwent detailed clinical evaluations, measurements of sleep physiology, cognitive function, autonomic nervous system function, and blood analyses of the sequence and expression of 20,000 genes have linked CFS to certain genes involved in immune and stress responses [82,83]. The following findings were noted in CFS patients compared with controls:

    Different levels of expression of genes with roles in the hypothalamic-pituitary-adrenal axis and the sympathetic nervous system; functionally these led to differences in how the body responds to hormones and other chemical messengers that are released in response to challenges and stressors such as trauma, injury, and other adverse events [82].
    DNA sequence changes in three genes associated with brain function, stress reactions, and emotional responses [83].
    The findings suggest that difficulty managing stress may be linked to the development of CFS. They also suggest that there is not a single cause of CFS, but that there may be a number of stress-related triggers in those with a genetic predisposition. These studies are the strongest evidence for a biologic basis for CFS and may help to more effectively diagnose and develop effective treatments for this disease.

  49. Interestingly, probably the best help “CFS” patients can get is from a psychiatrist.

  50. geo says:

    @ skepticalhealth

    “Oh wow, my skepticism about CFS is now being likened to racism. This is a horrible tactic that people use by trying to associate something that they don’t like hearing with something they know that most people don’t like hearing. Grow up.”

    No skepticalhealth. Seeing as it was you who started by casually associating CFS with the obese, I am surprised that you take such offence by my pointing out how a willingness to make such associations with minority groups often leads to criticism. It seems that you do not like hear this. I will not tell you to grow up, as I do not think your problems are any less common in the old than the young.

    “I’m perfectly fine with diagnosing someone with CFS as long as we accept the seemingly likely possibility that it is a mental health disorder. ”

    The seemingly likely possibility? Maybe if when? I cannot imagine why patients would be sceptical of such an approach to diagnosing mental health problems.

    “Of course, people who either have been diagnosed or self-diagnosed with CFS will not be happy to hear this. They will want to find some cause of their CFS, because they’ll be “skeptical” that they have a mental disorder. They’ll continue to write novel length blog posts, liken peoples opinions to racism, and completely blow things out of proportion in an attempt to make people accept them as having “caught” CFS.”

    Of course. That’s what they all do isn’t it? You know the sort. I’m sick of the political correctness that stops it being said. They all look the same to me – obese. And then they dare think that it’s acceptable to imply any degree of prejudice on my part. How childish they are.

    “It surely isn’t any disease that people are “catching”, as if transmitted by a virus.”

    Pretty good evidence from prospective studies of glandular fever/mono and other viruses as significant risk factors for going on to be diagnosed with CFS, with the severity of the initial immunological response seeming to be the best predicting factor for this. Who knows through – maybe these findings will turn out to be wrong, and we’ll identify some cognitive or emotional problem instead. There’s still an awful lot that isn’t known, and some like to use this ignorance to legitimise their own pursuit of a sense of superiority of those patients who suffer from this condition. It’s a bit sad really.

  51. The “pretty good evidence” is only convincing to people who want to believe it.

  52. geo says:

    Oh, I see. You’re that sort of ‘skeptic’. I feel sorry for you and your patients.

    There are lots of studies on this. This one looks at three different viruses, and one of the authors was Bill Reeves, who was pushing psychological work on CFS at the CDC when this was published:

    http://www.ncbi.nlm.nih.gov/pubmed/16950834

    I wouldn’t put much faith in to any one study, particularly when it comes to CFS, but the association with glandular fever has been found a number of different times, so it would be rather surprising if it turned out to be completely wrong.

  53. Yes, I’m one of *those* skeptics, who doesn’t believe in unproven and disproven things like magical viruses or post-viral syndromes causing debilitating fatigue primarily in middle-aged white women who more often than not have psychiatric disorders. As rough as that may be to write, or to read, it’s mostly true and backed by the majority of the evidence.

    What we know:
    - No reasonable evidence that CFS is in any way related to any virus currently known to man.
    - CFS is much, much, much more prevalent in certain ethnic and socioeconomic groups and sexes.
    - CFS “victims” are more likely than not to have a psychiatric issue, possibly undiagnosed
    - CFS essentially does not exist in certain groups of people (are there any African Maasai who still live in the bush that complain of CFS?)
    - There are no objective findings whatsoever in patients with CFS, which is a characteristic shared with most (all?) mental disorders, and is not shared with any communicable or non-psychiatric disorders.

    So yeah, call me one of “those” skeptics, simply because I’m siding on the side of evidence. To anyone talking about fakers: I never called anyone a faker. I am simply siding on the side that seems to be the most likely, that it’s probably a psychiatric illness.

  54. mousethatroared says:

    Folks – You’ll have the excuse SH his dog ate all his citations.

  55. @MIM,

    Which of my “what we know” points do you disagree with? I’m sure that in your vast experience and vast knowledge of medical pathologies, you would be able to drum up some high quality data to combat some of those points? Or were you just being a troll?

  56. geo says:

    @SkepticalHealth:

    “Which of my “what we know” points do you disagree with? I’m sure that in your vast experience and vast knowledge of medical pathologies, you would be able to drum up some high quality data to combat some of those points? Or were you just being a troll?”

    You’re so masterful.

    “CFS is much, much, much more prevalent in certain ethnic and socio-economic groups and sexes.”

    Oh dear. Even as lazy prejudices, those are out of date. This is early 90s stuff. Look at population based studies in to different ethnic and socioeconomic groups, there have been a few now of varying quality. Given the difficult of diagnosing CFS, we cannot be confident in any of these findings, but it seems that different groups have broadly similar levels of prevalence, with it perhaps being higher in lower income and minority ethnicity groups.

    eg: http://www.ncbi.nlm.nih.gov/sites/entrez/10527290?dopt=Abstract&holding=f1000,f1000m,isrctn

    There have also been a couple of recent studies comparing rates of CFS in the population of the UK and US with Nigeria and Brazil, and again finding little difference (slightly higher in Nigeria I think):
    http://www.ncbi.nlm.nih.gov/pubmed/17439996
    http://www.ncbi.nlm.nih.gov/pubmed/19182171

    re the evidence that certain viruses seem to lead on to a diagnosis of CFS – this is not controversial. Those most keen to build their careers upon the medicalisation of the cognitions and behaviours of CFS patients will still recognise that the evidence shows an association between suffering from certain viral infections, and then going on to be diagnosed with CFS. You don’t seem to have been interested in the study I posted above, so there’s probably no need for more.

    As for no objective findings, like mental health disorders, and the potential for undiagnosed mental health disorders – if mental health disorders have no objective findings, why do you find these diagnoses any more respectable than post-viral fatigue? Given the difficulty of accounting for confounding factors in the diagnosis of many mental health disorder, an appropriate control would be need here. Those with CFS and MS have both similarly reported higher levels of personality disorders than healthy controls, but when these things are judged on pragmatic functional grounds, this is entirely unsurprising. Our understanding of exactly what some mental health problems are and how they should be diagnosed is often no better than our understanding of CFS.

    For evidence of distorted cognitions, we should look back at your claims about CFS – An illness of obese middle-aged, wealthy white women in western countries, and without viral infections being a risk factor: it’s just not what the evidence shows, is it? The trouble with quackery is that it’s a very stigmatised condition. This can lead to sufferers not wanting to accept the true nature of their problem, and thus they reject the effective treatments which we have available for them. We only want to help you SkepticalHealth, but to do that, you need to take a big step and accept that you need our help.

  57. @MIM, for as much you seem to enjoy browsing sites like SBM, you may actually benefit from paying for a subscription to a service that compiles and organizes primary literature, and does a decent job of weeding out the “noise.” Most of us here probably pay for UpToDate, which is a mind-boggling collection of medical data, all organized, and easy to access. Most doctors use UpToDate, or a similar service, for treatment advice when they aren’t quite sure about something. There’s been very few times I couldn’t find something that helped me there, and when it has been lacking, it’s on those things that are just so rare that there’s not much data available.

    My longer post above, the copy/paste, is from UTD. Furthermore, my other points up above are backed up by available data, again most/all of which is encompassed in the article on UTD. So, you can make troll-ish posts like the one you just made, or, you could consult an expert database and read up on it yourself. And I don’t mean that in an offensive way, but for some of the questions you ask, you could actually get first hand, high quality information. I’m not saying everything in these databases is flawless, but it’s a pretty damn good start.

  58. mousethatroared says:

    SH well my vast experience in high school term paper writing suggested that if we include references to studies we should inform the reader how to find those studies.

    i thought this was still standard. Since most of the writers and commenters here included links when they talk about a study.

    So when you say “Antibodies to these and other viruses were initially found to be more prevalent in patients with CFS than in controls. Subsequent studies, however, revealed only higher titers or irreproducible results in these patients [32,33].”

    What is the 32-33? what subsequent studies? What patients with CFS what controls were used?

    Perhaps a link to where ever you cut a pasted this lengthy except from would be helpful, since it may include the citations that seems relevant to the piece.

  59. mousethatroared says:

    SH – So you plagiarized UTD and when someone calls you on a link for an obviously cut and paste piece you think they’re a troll.

    Well you would know about trolling, wouldn’t you?

  60. geo says:

    My post with links seems to be stuck in moderation for some reason.

  61. geo says:

    @SkepticalHealth:

    “Which of my “what we know” points do you disagree with? I’m sure that in your vast experience and vast knowledge of medical pathologies, you would be able to drum up some high quality data to combat some of those points? Or were you just being a troll?”

    You’re so masterful.

    “CFS is much, much, much more prevalent in certain ethnic and socio-economic groups and sexes.”

    Oh dear. Even as lazy prejudices, those are out of date. This is early 90s stuff. Look at population based studies in to different ethnic and socioeconomic groups, there have been a few now of varying quality. Given the difficult of diagnosing CFS, we cannot be confident in any of these findings, but it seems that different groups have broadly similar levels of prevalence, with it perhaps being higher in lower income and minority ethnicity groups.

    eg: [link removed]

    There have also been a couple of recent studies comparing rates of CFS in the population of the UK and US with Nigeria and Brazil, and again finding little difference (slightly higher in Nigeria I think):

    [2 links removed]

    re the evidence that certain viruses seem to lead on to a diagnosis of CFS – this is not controversial. Those most keen to build their careers upon the medicalisation of the cognitions and behaviours of CFS patients will still recognise that the evidence shows an association between suffering from certain viral infections, and then going on to be diagnosed with CFS. You don’t seem to have been interested in the study I posted above, so there’s probably no need for more.

    As for no objective findings, like mental health disorders, and the potential for undiagnosed mental health disorders – if mental health disorders have no objective findings, why do you find these diagnoses any more respectable than post-viral fatigue? Given the difficulty of accounting for confounding factors in the diagnosis of many mental health disorder, an appropriate control would be need here. Those with CFS and MS have both similarly reported higher levels of personality disorders than healthy controls, but when these things are judged on pragmatic functional grounds, this is entirely unsurprising. Our understanding of exactly what some mental health problems are and how they should be diagnosed is often no better than our understanding of CFS.

    For evidence of distorted cognitions, we should look back at your claims about CFS – An illness of obese middle-aged, wealthy white women in western countries, and without viral infections being a risk factor: it’s just not what the evidence shows, is it? The trouble with quackery is that it’s a very stigmatised condition. This can lead to sufferers not wanting to accept the true nature of their problem, and thus they reject the effective treatments which we have available for them. We only want to help you SkepticalHealth, but to do that, you need to take a big step and accept that you need our help.

  62. We only want to help you SkepticalHealth, but to do that, you need to take a big step and accept that you need our help.

    The only help I would like from you is to stop spreading your rampant quackery nonsense around the internet. There is zero evidence that CFS is a “post-viral fatigue” (you need a DISEASE MECHANISM), and the suggestion of such is just nonsense. The only “reality distortion” here is by you quacks trying to convince people that they have a legitimate acquired pathology, instead of a likely psychiatric disease. In truth, you’re likely delaying their treatment. Because if you falsely convince them it’s some mythical post-viral syndrome, they’ll waste time pursuing quack treatments and waste time being convinced by quacks such as yourself that they have this issue, when in reality it may merely be an undiagnosed depression, or otherwise somewhat treatable condition.

    I wonder if there are groups of people out there with depression, bipolar, schizophrenia, etc, that have created these mythical disease processes to convince themselves that they “caught” it from a previous viral illness, or a vaccination, or from a bad jar of peanut butter. Post-peanut butter syndrome.

  63. It should be renamed “Chronic Fatigue Syndrome with Maladaptive Denial”

  64. mousethatroared says:

    Geo – the spam filter on the SBM site often holds comments including three links or more in moderation.

  65. Kat says:

    @SkepticalHealth
    Just because little is known about CFS does not make the symptoms people feel any less real. Im not obease or depressed and what i feel is real and painful and it is hard to lead a fully active life. Granted i think this diagnoses is a diagnoses of exclusion and i am looking for an answer but that doesnt change the symptoms. I also think there are people out there with this diagnoses who are full of it but not all of us are. Respect these people have pain and fatigue and it is a struggle and more needs to be learned about it.

  66. @kat,

    Nobody said what you feel isn’t real. But, what *kind* of answer would satisfy you? Why would you be unhappy to know that CFS is a psychosomatic/psychiatric disorder, as opposed to it being a “post-viral syndrome”? Don’t you think, that with all the money put into researching it, when absolutely *nothing* can be found wrong with the body, that it likely *is* a psychiatric condition?

    It’s interesting. It seems that the only people who are so obsessed with it being a non-psychiatric issue are those that likely in denial about having a psychiatric issue – a true conundrum.

  67. Kat says:

    @SkepticalHealth
    Im many cases it could be psychiatric. I know in my case it is not caused by a psychiatric condition and its an option i have explored. I have no depression or anything else and i have no reason to make myself feel this way. I never bought into the post-viral thing either. There is something wrong with my body, its not like all the blood work and MRIs and test are always 100% normal, so to say nothing can be found wrong with the body is not accurate. Im also pretty sure constant pain and fatigue isnt nothing. I think your just making too many generalizations and putting these people and the symptoms they have down for no reason but im not disagreeing that some cases are psychosomatic.

  68. How do you know that in your case it is not psychiatric? The mere absence of depression is meaningless. Furthermore, no scientific data has revealed any reproducible metabolic or physiologic abnormality in patients with CFS, so yes, I was accurate.

    I’d love to know the answers to lots of questions. What sex are you? Race? Age? Do you work? How much do you weigh? How often do you exercise? What does your husband do for a living? Is he still fit and attractive or has he let himself go? How many kids do you have? How old are they? What sort of diet do you have? Do you sleep well? Do you have a family history of any medical or psychiatric conditions? Etc, etc.

    Also, I’m always curious how all this fringe believers always find these topics when they get posted on SBM. Is the readership that large?

  69. daedalus2u says:

    XMRV is not a cause of CFS. XMRV is now known to be a virus that was generated in a laboratory by accident in a unique event due to contamination of a prostate cancer cell line with two different non-replicating mouse ERVs which recombined and formed a a virus that is capable of replicating. XMRV is capable of infecting some cells, it is not a particularly infectious.

    http://www.ncbi.nlm.nih.gov/pubmed/21628392

    It is a unique and singular event that created XMRV. XMRV is not present as an infectious agent in the human population, or in any population other than cells in cell culture. We know this because every sequencing of XMRV haas been virtually identical. When viruses such as XMRV replicate themselves, their replication fidelity is not as high as when eukaryotes replicate genomic DNA (where ERVs hang out).

    The idea that there are no physical symptoms of mental health disorders is simply nonsense. There may be no physical symptoms that current technology is able to measure. We know that since the brain is a physical object, any “disorder” of the brain must have physical manifestations in that physical object. That we can’t measure those physical effects is due to a limitation of our technology. 100 years ago they couldn’t measure insulin (or the lack of insulin) in blood. Did that mean that diabetes had no physical cause? Of course not.

    Imagining that there are no physical causes of mental disorders is the same as attributing mental disorders to non-physical causes, evil spirits, demons, vapours, unbalanced chi, or insufficient magic water.

  70. @daed,

    I’m not sure who you are writing to. I don’t think that anyone wrote that there are not physical symptoms associated with mental disease. What we don’t have are measurable objective findings. We can’t stick a probe in your body and measure fatigue, nor can we stick a gauge on your brain and measure depression. We can observe the effects of these psychiatric diseases, but we can’t in any way objectively measure them.

    As I wrote: CFS has all the markings of psychiatric disease, and none of the markings of non-psychiatric disease.

  71. Kat says:

    @SkepticalHealth
    Oh so your saying lack of evidence doesnt exclude an answer? Interseting. There may very well be physiologic symptoms in all the people with CFS, just not one that links them together and explains it all. Nice that you’re making generalizations again though that none of these people have any measurable physical problems because that isnt accurate since you do not know. Am i suppose to give you my medical history now like you have the magical answer? Im not a fringe believe i just agree with Phil Plait…”Don’t be a dick”.

  72. daedalus2u says:

    SH, when you suggest that CFS is “psychiatric”, that is exactly what you are suggesting.

    Your statement:

    “Furthermore, no scientific data has revealed any reproducible metabolic or physiologic abnormality in patients with CFS,”

    is false.

    Those who have read (and understood) the CFS literature, know that there are reproducible and measurable physiological characteristics of those affected.

  73. Honestly you just sound uninformed. Please identify one measurable physiological derangement that is consistent in people with CFS.

    What you, and others, seem to be saying is that I’m a fool for not accepting something for which there isn’t any convincing evidence. Some of you are harping on a post-viral syndrome. I just as easily could invent another cause, which would have just as much evidence supporting it, and then turn around and insult you because you don’t accept my non evidenced-based position.

  74. Sigh, internet arguing is exhausting.

    # daedalus2uon 29 Sep 2012 at 10:53 pm
    SH, when you suggest that CFS is “psychiatric”, that is exactly what you are suggesting.
    Your statement:
    “Furthermore, no scientific data has revealed any reproducible metabolic or physiologic abnormality in patients with CFS,”
    is false.
    Those who have read (and understood) the CFS literature, know that there are reproducible and measurable physiological characteristics of those affected.

    Sigh. You’re just wrong on every level.

    First, when I suggest that CFS is a psychiatric illness, that does not preclude the possibility that these people feel pain and/or fatigue. Do you know what somatiform disorder is? It’s a psychiatric illness, go look it up.

    My statement that there are no reproducible metabolic or physiologic abnormalities is absolutely true. There is no blood test you can perform, biopsy you can obtain, or scope you can look with to identify CFS. Nothing. You wrote you are familiar with the CFS literature, and that I’m wrong. Ok. So point me in the direction of an evidence-based test that can be performed to reliably diagnose CFS. I’ll probably be waiting a long time, because the diagnosis is itself a diagnosis of exclusion, which by definition means there isn’t a reliable test to identify afflicted patients.

    I see two possibilities:
    1. You have no idea what you are talking about and are just blantantly wrong.
    or
    2. You completely misundstanrd what metabolic or physiologic abnormalities means. There is no muscle break down, there are no out-of-whack metabolytes, there are no viruses that turn up, and there are no weird antigens or antibodies (at least, identified so far… HH gives the example of H. pylori… which is 30 years old – lol.) that are magically causing this disease. Bottom line: there is not a single objective thing we can look at to diagnose the disease.

  75. Kat says:

    You’re not a fool because you dont buy the post-viral thing because I don’t either. Your’re a fool because you’re saying these people have nothing wrong with them and it’s all in their heads. I never said there was a consistant physiological symptom in CFS paients, I am saying that just because there is not a consistant one does not mean there are not any.

  76. Now that is a foolish generalization. Would you say that someone with schizophrenia is “all in their head?” Of course you wouldn’t. So why would you make such a foolish statement like what you just wrote and say that because I suggest CFS is a psychiatric diagnosis that nothing is wrong with them? Wow.

  77. mousethatroared says:

    SkepticalHealth two nights ago “Yeah, I always kind of doubt these people who claim to be so incredibly fatigued, and yet spend all day trolling the internet, writing ridiculously long posts about how difficult their life is. Just come to work with me one day.”

    SkepticalHealth to a CFS patient tonight “Nobody said what you feel isn’t real”

  78. @MTR,

    I’d be interested in hearing what psychiatric disorders someone has who does nothing but literally follows someone else around on a message board making relatively lame comments about them? You’re somewhere between stalking and trolling, with a little bit of obsessiveness added in. Really strange. You don’t upset me, but I just wonder why you don’t have anything better to do than post nonsense behind me?

  79. mousethatroared says:

    Gosh – SH – I thought I’ve been pretty clear in the past I’ve been diagnosed by a psychiatrist with social anxiety disorder with rumination tendencies. In other words I’m shy and I think too much. But psychiatric diagnoses is not an exact science, I’m told (by the same psychiatrist and a far amount of reading) so maybe that’s not accurate. Sometimes I think I have a form of scruplosity.

    Regardless, You see I have an interest in mental health disorders and the misperceptions and stigma that often surround them. You could see from previous posts that I also questioned a few other commenters approaches that I believed perpetuated this stigma. Your comments, such as the coy wonderings I quoted above, perpetuated that stigma and I think that’s wrong. I think the fact that you then try to act like you don’t buy into the same stigma that you just played on two days ago is wrong.

    As to doing nothing but follow you around…Today I work up, got coffee, Hung out with my husband (I told him about the rather spectacular drama between nybrgus, you and Harriet Hall in the other thread, because, hey! I don’t watch reality TV, but you can’t make up more entertaining comedy than your performance there) Laughed at the kids, Harrassed kids to get them ready for soccer. Went to daughter’s soccer game (damn is she fast) which they won. Went to son’s soccer (Kinda annoying parents) which they lost, badly. ice cream, lunch, walked dog, laundry, danced with husband to Jack White, cleaned kitchen (which is an ongoing task and usually when I check SBM to break up the monotony), read emails, shopping for cub scout and home supplies (listen to MIA), dinner with family, dishes again, train dog, admire kids amazingly clean rooms (what did they do wrong that they decided to clean their rooms without nagging, bribing or supervision) fed mouse, then checked out SBM because husband was watching football, which I’m not into. Watched an episode of Alphas, checked out Phil Plait (Hey, he looks like my husband) because I always wondered who the guy who said “don’t be a dick was”. Looked at sun explosions (ohhhh, ahhhh) googled Scott Lillienfield, who I admire, read an article. Bookmarked a page on BrainScience to listen to tommorrow. Periodically checking into SBM, although the week-end action is not good. Honestly I don’t know why I waste my time, because then I just see your posts…one after another.

    Yeah SH all I do ALL day is follow you around. Clearly you didn’t cover cognitive distortions in your study of psychiatry.

  80. BillyJoe says:

    SH,

    “”Yes. People who go to the store, buy liters of sugary soda, and eat horrible fattening food all day long are to blame for their obesity. To blame “society”, or “advertising” or anything of the sort is to baby and coddle a lazy person. People are responsible for their own actions”

    I’m not blaming society or advertising. And I’m not blaming the sufferer. Things are they way they are. Society can have a influence by making public service announcements on various health issues, posters and handouts and by controlling advertising. Sufferers can help themselves by listening and acting. Sometimes they are unable to overcome their addictions or habits. Even when clearly suffering from the effects of their lifestyles. Sometimes the addiction or habit is too strong to change. Nothing is gained by playing the blame game. And it’s no reason to give up on them.

    The family friend I mentioned did eventually give up smoking, but continued her fast foods until diabetes started to cause organ damage, but not in time to save her leg. What’s the point in blaming her. Fortunately her GP kept trying to help her and at least she is still alive. And, as I said, her family and friends are all grateful for that.

    I don’t expect any if this to change the way you approach patients with lifestyle diseases. Just to show you that there is a better way. :l

  81. @B,

    Obviously almost any doctor is going to help that patient and treat them well. But in reality, her obesity and poor health is her fault. You really don’t have an argument, but you are sure stretching for some way to write something condescending about the way I see or treat patients, which unsurprisingly is something that you have simply no experience with. Maybe you don’t understand “fault.” If she is “addicted” to eating donuts and drinking coke, and her “addiction” is too strong, yes, it is still her fault. Let me ask you this. An alcoholic leaves a bar, drunk, and runs over a child. Is it the alcoholic’s fault? Or do we blame society for making beer look fun?

    @MTR,

    Your having a psychiatric diagnosis does not excuse you following someone’s every post with a weird or snide comment. So if I say something that offends you, does it “right” it by trying to be offensive back? Do two wrongs make a right? Honestly, and boy I sure hope I don’t offend you, what I see is you using your psychiatric diagnosis as an excuse to behave poorly. Hey, if I’m offensive, at least I just admit that my online persona is brutal.

    -

    After so many of the CFS experts called me an idiot here, I was really looking forward to learn about these physiological and metabolic changes that CFS causes in the body that allow it to be reliably tested for. Daed2? geo? Kat? Where are you guys dropping knowledge on me?

  82. In Vitro Infidelium says:

    @ bluedevilRA

    Quote “It is primarily a disorder of young to middle aged adults. CFS is about twice as common in women.” I don’t doubt that there are patients in the 45-65 range, but I don’t think that’s where peak incidence is.” unquote

    The references given at Update don’t appear related to the quoted text, the text however is reproduced entirely on the bacme site http://www.bacme.info/document_uploads/MOM-Guidelines/CFSMESuspected.pdf where again the claim is unreferenced so we may be dealing with a commonly shared ‘factoid’. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1079668/ seems a substantive reference (see figure 4) also http://archinte.jamanetwork.com/article.aspx?articleid=215827 the former deals with incidence, the latter prevalence. Of course unless one is arguing for CFS to be of short lived chronicity, then onset in both younger adults and in middle age, would produce a ballooning of prevalence amongst the older age group. The prevalence rates for women in most studies is significantly higher than the 1:2 M/F ratio suggested.

    @ SkepticalHealth

    Quote “What is the science that precludes CFS from being a mental health disease? We can’t do a blood test for depression, and we certainly don’t blame depression on a virus, or on some other disease process. Why would you think CFS would be any different?” unquote

    Your logic escapes me. Perhaps the following will be of help to your understanding:

    1. Immunological responses are indeed implicated in depression associated with acute infective illness. Treatment of depression in such cases is achieved by treatment of the infection, usually without recourse to antidepressants, but immune boosting can of itself necessitate treatment http://www.ncbi.nlm.nih.gov/pubmed/18079286

    2. M.E/CFS is recognised by many of those who have researched the condition as being heterogenous ( Lipkin comments as does I think Harvey Alter http://cii.columbia.edu/blog.htm?LOfRcb ) – that is there is not one single aetiology, but a variety of processes producing common symptom sets. It would be foolish to conclude that psychiatric contribution to aetiology could be excluded in all cases, equally if there is heterogeneity – psychiatric contribution to aetiology is unlikely to be present in all cases.

    3. What is the science of psychiatry ? Outside neuro-chemistry, neuro-surgery and (less certainly) behavioural psychology – the scientific base of psychiatry is profoundly wanting. To take as a default an ascription to psychiatric illness, in all conditions of unexplained aetiology is (from an SBM perspective) perverse. The starting point logically must be known science and work from there, to date psychiatric involvement in the generality of M.E/CFS has been shown as a negative association http://www.ncbi.nlm.nih.gov/pubmed/10403156 , http://www.ncbi.nlm.nih.gov/pubmed/15996197 , http://bjp.rcpsych.org/content/176/6/550.full

    4. Psychiatric intervention in M.E/CFS performs abysmally, with treatment deliverers in one trial http://www.bmj.com/content/340/bmj.c1777?rss=1 responding to its failure, bleating that GPs had supplied patients who did not share the philosophical precepts of the treatment regime. I believe something similar is said by homeopaths.

    @ pharmavixen

    Quote “People with functional disorders aren’t faking; their distress is real. But IMV more research is needed on the physical effects of years and years and years of constant stress that these people inflict upon themselves.” Unquote

    I have the same perspective about pharamacists.

  83. Wow, absolutely nothing. @daedalus2u, why can’t you just admit that you were completely wrong. If there were readibly identifiable physiologic or metabolic abnormalities in patients with CFS, then it wouldn’t be a diagnosis of exclusion, and the diagnosis wouldn’t be so controversial. Instead of simplying admitting your error, you have now insulted me and provided a link which does absolutely nothing to backup your point. Really, who’s trolling now?

  84. pharmavixen says:

    MTR, I’m not sure I understood your reply to my post. Suggesting that there is a psychiatric component to functional disorders isn’t blaming the victim or implying that people bear responsibility for their own treatment.

    ZenMonkey, I suggest that there are too many unknowns to say that psychiatric causes are ruled out before a diagnosis of CFS is made. It’s true that physicians may find that these patients don’t meet the DSM-IV criteria for, say, major depressive disorder. But that doesn’t mean there isn’t something going on that hasn’t been defined yet. Harriet has made some salient points about the difficulties in teasing out functional disorders from somatization. Maybe there is a degree of somatization with these disorders. That doesn’t mean anybody is malingering or otherwise faking.

  85. geo says:

    @SkepticalHealth:

    “I was really looking forward to learn about these physiological and metabolic changes that CFS causes in the body that allow it to be reliably tested for. Daed2? geo? Kat? Where are you guys dropping knowledge on me?”

    I never said that there were any changes, cognitive, physiological or emotional, which could be reliably tested for in CFS. The closest thing to that would be the HPA axis stuff, but even that I suspect could simply be secondary to different causes of unexplained fatigue.

    I feel no obligation whatsoever to produce evidence to support claims I never made. It would make more sense if you were to attempt to defend the claims which you did make.

    You wrote:

    “Yes, I’m one of *those* skeptics, who doesn’t believe in unproven and disproven things like magical viruses or post-viral syndromes causing debilitating fatigue primarily in middle-aged white women who more often than not have psychiatric disorders. As rough as that may be to write, or to read, it’s mostly true and backed by the majority of the evidence.
    What we know:
    - No reasonable evidence that CFS is in any way related to any virus currently known to man.
    - CFS is much, much, much more prevalent in certain ethnic and socioeconomic groups and sexes.
    - CFS “victims” are more likely than not to have a psychiatric issue, possibly undiagnosed
    - CFS essentially does not exist in certain groups of people (are there any African Maasai who still live in the bush that complain of CFS?)
    - There are no objective findings whatsoever in patients with CFS, which is a characteristic shared with most (all?) mental disorders, and is not shared with any communicable or non-psychiatric disorders.
    So yeah, call me one of “those” skeptics, simply because I’m siding on the side of evidence. To anyone talking about fakers: I never called anyone a faker. I am simply siding on the side that seems to be the most likely, that it’s probably a psychiatric illness.”

    I replied:

    “@SkepticalHealth:
    “Which of my “what we know” points do you disagree with? I’m sure that in your vast experience and vast knowledge of medical pathologies, you would be able to drum up some high quality data to combat some of those points? Or were you just being a troll?”
    You’re so masterful.
    “CFS is much, much, much more prevalent in certain ethnic and socio-economic groups and sexes.”
    Oh dear. Even as lazy prejudices, those are out of date. This is early 90s stuff. Look at population based studies in to different ethnic and socioeconomic groups, there have been a few now of varying quality. Given the difficult of diagnosing CFS, we cannot be confident in any of these findings, but it seems that different groups have broadly similar levels of prevalence, with it perhaps being higher in lower income and minority ethnicity groups.
    eg: http://www.ncbi.nlm.nih.gov/sites/entrez/10527290?dopt=Abstract&holding=f1000,f1000m,isrctn
    There have also been a couple of recent studies comparing rates of CFS in the population of the UK and US with Nigeria and Brazil, and again finding little difference (slightly higher in Nigeria I think):
    http://www.ncbi.nlm.nih.gov/pubmed/17439996
    http://www.ncbi.nlm.nih.gov/pubmed/19182171
    re the evidence that certain viruses seem to lead on to a diagnosis of CFS – this is not controversial. Those most keen to build their careers upon the medicalisation of the cognitions and behaviours of CFS patients will still recognise that the evidence shows an association between suffering from certain viral infections, and then going on to be diagnosed with CFS. You don’t seem to have been interested in the study I posted above, so there’s probably no need for more.
    As for no objective findings, like mental health disorders, and the potential for undiagnosed mental health disorders – if mental health disorders have no objective findings, why do you find these diagnoses any more respectable than post-viral fatigue? Given the difficulty of accounting for confounding factors in the diagnosis of many mental health disorder, an appropriate control would be need here. Those with CFS and MS have both similarly reported higher levels of personality disorders than healthy controls, but when these things are judged on pragmatic functional grounds, this is entirely unsurprising. Our understanding of exactly what some mental health problems are and how they should be diagnosed is often no better than our understanding of CFS.
    For evidence of distorted cognitions, we should look back at your claims about CFS – An illness of obese middle-aged, wealthy white women in western countries, and without viral infections being a risk factor: it’s just not what the evidence shows, is it? The trouble with quackery is that it’s a very stigmatised condition. This can lead to sufferers not wanting to accept the true nature of their problem, and thus they reject the effective treatments which we have available for them. We only want to help you SkepticalHealth, but to do that, you need to take a big step and accept that you need our help.”

    You do not seem to have made any effort to support your own claims with any evidence at all, but instead are just insisting that other have some responsibility to prove what causes CFS – there is much that is unknown about CFS, but that is no excuse for your quackery.

    “It should be renamed “Chronic Fatigue Syndrome with Maladaptive Denial”

    What evidence of maladaptive Denial is there that can be reliably tested for and found amongst CFS patients? It seems that you have rather low evidentiary standards for your own prejudices.

    “CFS “victims” are more likely than not to have a psychiatric issue, possibly undiagnosed”

    “I wonder if there are groups of people out there with depression, bipolar, schizophrenia, etc, that have created these mythical disease processes to convince themselves that they “caught” it from a previous viral illness, or a vaccination, or from a bad jar of peanut butter. Post-peanut butter syndrome.”

    What do you think causes mental illness?

    This isn’t an area I know much about, but my understanding is that some sort of viral involvement is thought to be the most likely explanation for the birth month effect that has been found with some of those conditions. ‘LOL these so-called-victims of schizophrenia are trying to convince themselves that there could be some magical neurological response to early exposure to viruses, rather than accepting it’s just their mind that’s the problem’.

    Why would it be so laughable for those diagnosed with depression to think the a biological response to a prior-viral illness may play a role? There is evidence of increased inflammation in patients with depression – who knows?

    Whether or not viral involvement plays any role in the development of these conditions, we should still try to restrict the claims we make to what the evidence shows, rather than jumping ahead with claims about refrigerator parents, or rich fat white women trying to escape responsibility by embracing victimhood.

    There are a number of different studies which show that certain viral infections significantly increases the risk of going on to fulfil the criteria for CFS. If you wanted, it is possible to avoid assessing the severity of the initial illness or objectively testing whether the patient is truly infected, and then it can be claimed that the belief that one is suffering from glandular fever increases the risk of being diagnosed with CFS – perhaps that would be more to your liking? Unfortunately the study I posted does not take this approach, but I’m sure there are some that do. (Here’s the study I posted earlier, I think it’s a worthwhile one, at least partly because it’s authors include those who were promoting a primarily psychological approach to CFS, so perhaps we can be less concerned that they manipulated data to support a pet theory: http://ukpmc.ac.uk/articles/PMC1569956//reload=0;jsessionid=ncIVBibfBRMlOPbZ0x3X.0 )

    There are certain types of quackery which those who recognise the immorality of homoeopathy are willing to turn a blind eye to, particularly when it’s aimed towards certain patients or diagnoses – they do themselves, and patients, a great disservice. It is particularly sickening to me when those who present themselves as rationalists or sceptics are also promoting prejudicial views unsupported by the evidence, indeed, even when they seem entirely ignorant of the evidence. I think that this sort of incompetent approach to medicine does much to explain the popularity of ‘alternative’ treatments.

  86. Linda says:

    @IVI,
    I didn’t spot your typo (English is my third language, after Dutch and French). I am a regular reader of SBM, and link here from time to time from Twitter and my science page. And I certainly don’t have a problem with the concept of prior plausibility. Yes, I thought your comment was weird, here’s why in more detail.

    You applied prior plausibility here (rightfully) to the issues with gender/preferentiality in the original paper. Don’t think I didn’t get your point there.
    But I will not follow you when you argue that if these issues had been detected an unpromising line of research could have been prevented. I think it is more reasonable to assume these issues were detected but the fact is that did NOT stop the publication and the line of research.

    So why is this? To many in this research field (incl peer review at Science) the possibility of retroviral involvement must initially have seemed like a hypothesis worth exploring given the already existing evidence on certain immune abnormalities in CFS (best documented: NKC dysfunction). I suspect certain obvious issues with the paper were found less important than these immunity considerations.

    Inevitably there was concern for the blood supplies as long as the theory was not ruled out.
    (FYI here in Belgium we have a ban on blood donation by CFS patients since about 10 years, long before the XMRV episode, and it will remain in place as long as there’s a risk of transmissibility of some as yet unknown factor – that’s not panic, but risk calculation);

    Then, when contradicting results came rolling in, the incentive to get to the bottom of this was even larger. I don’t think the lengthy (was it?), costly scenario (the ‘mess’, as you call it) that followed could have been avoided.

    You saw things going downhill, others saw them going uphill. I agree Mikovits’ petulant behaviour (you can call it that, I think) was dreadful, but she’s not the first researcher sticking too long to results. In the end she had the balls to admit she was wrong.

    It certainly was a bumpy ride: a new virus was discovered in the process, while it was being de-discovered in CFS. I’m with Steven Novella here that science worked in this case the way it’s supposed to. It was not the lack of scientific rigour that caused this, but the application of it.

    Also, if the efforts to substantiate the contamination findings in CFS hadn’t been so efficient, we would still be stuck with erroneous results in prostate cancer today. After how many years? 6 or 7? The CFS episode took 3 years. And then we had the memorial service. For some this was needed.

    I followed every single development in this story very closely. I was among those who warned patients against overhyping the initial results and against the commercial XMRV/MLV tests that were being pushed on them by some irresponsible characters (for that I was even called a ‘patient abuser’ by some Mikovits-fans back then).

    It is true that ME/CFS patients are still as sick as ever, but it is also true this episode was an eye-opener that set off promising new research into the disease. I see the glass as half-full, while you see it as not even half empty, but empty?

  87. evilrobotxoxo says:

    I’m a psychiatrist, and I never know exactly what to say when I see people arguing about whether or not something is a psychiatric disease. What exactly does the term “psychiatric” mean? I’m a psychiatrist, and I can’t come up with a perfect answer to that question.

    The CFS community was really excited about the possibility that CFS might be caused by a virus in part because that would supposedly mean it’s not psychiatric. But how do we know that depression or schizophrenia aren’t caused by viruses? Ultimately, we don’t. The patterns of disease prevalence and etc. are not consistent with them being caused by an infectious agent, but even if an infectious etiology were discovered, they would still be psychiatric diseases. I don’t have any answers to offer, I’m just pointing out that the debate itself doesn’t make a lot of sense to me.

  88. mousethatroared says:

    @0harmavixon – I was trying to get you to think about how your words might contradict your meaning. You said “People with functional disorders aren’t faking; their distress is real. But IMV more research is needed on the physical effects of years and years and years of constant stress that these people inflict upon themselves.”

    When you say something is self-afflicted it suggests that the person has control over the process and is choosing to engage in a practice that is damaging.

    A person with an anxiety disorder and many disorders along that spectrum only have control over some things. Cognition and the brain are a two way street. We do not solely come up with the fears then experience a response from our brains and body. Usually our brains and body have a conditioned responses to certain stimuli that has developed over a long period of time, often even in early childhood. Upon experiencing the stimuli, the brain sends our “minds” the fear response. Our minds do the best they can to make sense and cope with it.

    A big part of cognitive therapy is finding better ways for the mind to cope with the brain’s anxious messages. But I don’t have control over the anxious messages my mind receives. I (my mind) is not inflicting this upon myself. My brain is inflicting this upon me.

    Many people with anxiety disorder are able to pursue cognitive therapy better when taking SSRIs because their brain seems to send fewer anxiety messages.

    Does this make sense? I know to someone not familiar with the concepts it may seem like splitting hairs, but really, it is not. Understanding that the person can not just stop inflicting themselves with stress is important because some part of the stress response is outside their control. Using language that contradicts that undermines the public’s understanding of the process.

    Sorry, this is long. I was hoping to avoid a long explaination. Which is why the short response was unclear, I guess.

  89. @evilrobotoxo,

    I do not find your argument compelling. It’s the whole “disprove a negative” thing. Well, what if I said that essential hypertension is caught by a virus, but we simply haven’t found the virus yet, and no, it doesn’t matter that essential hyerptension’s patterns don’t match that of a spreading disease. Honestly, I don’t see why CFS being a psychiatric disease is controversial, after all, we readily accept that psychiatric disease can make the body feel pain, fatigue, etc, in the form of a samatoform disorder.

    You did bring up an interesting point. Hypothetically, if a virus caused schizophrenia, I don’t think that it would still be a psychiatric disease. After all, there are many diseases that can alter mood, but obviously they wouldn’t cause a “chronic” mood disodrder like schizophrenia. They only become psychiatric once no other cause can be found. Ie, if hypothyroidism is causing a depressed mood, we don’t consider the hypothyroidism a psychiatric condition. I think that gives us a good working definition for a psychiatric disease: a mood disorder that has no identifiable cause (be it lab test, scope, or pathogen), and is amenable with mood-alterating drugs or psychotherapy. CFS fits this rather well.

  90. Linda says:

    @evilrobotxoxo glad you said that – you might be interested to talk to someone like Mady Hornig http://www.mailman.columbia.edu/our-faculty/profile?uni=mh2092 who specializes in the relationship between pathogens and neuropsychiatric disorders.

    You’re right, this debate doesn’t make a lot of sense. But that’s just because someone here is close-minded and weirdly provocative, and doesn’t make the distinction between mind and brain.

    It is a common misconception that patients are opposed to any psychiatric involvement in this disease. Anything that helps is welcomed. The real problem is that the biopsychosocial/psychosomatic/functional disorder theory of CFS (whatever you want to call it) has perpetuated delegitimation and denial of the disease, and cut patients off from good care. The sickest have been treated the worst.

    It is not true that CBT and GET are ‘treatments’ for CFS. Most patients try it, and remain sick. Work particpation even diminishes instead of increases after such “therapies”. The truth is, how plausible (and trendy) the body/mind woo in the BPS literature may seem, none of the trials ever did any serious harm reporting. This is an EBM failure. Yes,research moves away from the theory, and the reason is obvious: it hasn’t worked in real life.

  91. Why do people always call others “close minded” just because they don’t believe whatever non evidence-based crap that person is preaching about?

  92. weing says:

    “But that’s just because someone here is close-minded and weirdly provocative, and doesn’t make the distinction between mind and brain.”

    What is the distinction between mind and brain?

  93. BillyJoe says:

    SH,

    In what sense are lifestyle diseases specifically the patient’s “fault”. It would be just as legitimate to say that it is the “fault” of the patient’s genes, or that it is the “fault” of the patient’s environment. After all, what else is there but genes and environment affecting what people do. So, in fact, it makes more sense to say that it is the fault of the patients genes and environment, except that “fault” is the wrong word. It is the “cause” of the persons behaviour. But, the main point is that it is unhelpful to apportion blame. It doesn’t help the patient to change by blaming her. She would be much more likely to change as a result of continual encouragement and education about how her prognosis can be changed for the better.

    But it seems now that you WOULD help such a fat lazy person, because you say that any doctor would help such a person. But, firstly, how can you help someone if you think that are just fat lazy slobs who have only themselves to blame? And, secondly, I distinctly remember you saying that you are too busy to waste time on such patients, so perhaps you’ve had a bit of a rethink?

  94. mousethatroared says:

    @weing – What is the difference between a psychiatric disorder and a neurological disorder?
    .

  95. @BJ,

    You are incredibly naive. Your non-argument is completely weak. You are arguing your viewpoint against my viewpoint. I believe that at some point, you have to blame the individual, and hold them responsible for their own actions. This is inclusive of both in a treatment settinng and out of one. I guess you believed that it’s not the alcoholics fault for running over the child?

    @MTR,

    This is a good time to apply my definition. Neurological diseases, such as myasthenia gravis can be diagnosed (besides physical symptoms) by looking for antibodies in the blood. Stroke can be diagnosed with imaging of the brain.

    Here’s an interesting case (if I screw this one up, I don’t have much experience with it, and I consulted a specialist): A patient came in with symptoms similar to that of a stroke – right sided weakeness, right sided facial droop, dysarthria, but in her history she always described a headache prior to the stroke. All of her imaging and tests came back completely normal, and given her history, I determined this was a hemiplegic migraine (a migraine so bad it brings on stroke symptoms). I consulted a neurologist, and he recommended a TCA (a psych drug), and that she pursue outpatient counseling (therapy) to decrease emotional risk factors that can bring on the headaches and hemiplegic migraines. So would we call this a neurological or psychiatric issue? No physical evidence of any disease, and the treatment was primarily psychiatric in nature. The only difference in this case is that you could technically diagnose it with genetic testing, but I doubt anybody would go that far.

  96. In Vitro Infidelium says:

    @evilrobotxoxo

    Quote “The CFS community was really excited about the possibility that CFS might be caused by a virus in part because that would supposedly mean it’s not psychiatric.” unquote

    The identification of a single ‘CFS commuity’ is unhelpful to say the least. Many of us were highly sceptical about not only the Lombardi research, but the Institution that produced it (WPI) and the very notion of a single causative pathogen, not to mention the very disturbing associations that were made by both Mikovits and Annette Whittmore of the WPI, with a whole raft of wooist thinking.

    M.E/CFS affected people (sufferers, their carers and families) inevitably look for confirmation of physical causation, and the disinterest of non psychiatric medical and research specialisms has led to a significant number of M.E/CFS affected people either embracing anti science or at least partialist science perspectives. This represents a significant faultline which itself precludes any monlithic notion of a CFS community, there are however other factors which also militate against the existence of one single illness focussed community – not least the age range of affected people. For what it’s worth my documentation and observation of the XMRV/CFS saga, from what I hope is a sceptical perspective can be found here: http://cfsmirror.blogspot.co.uk/

  97. In Vitro Infidelium says:

    @ Linda
    Quote “But I will not follow you when you argue that if these issues had been detected an unpromising line of research could have been prevented. I think it is more reasonable to assume these issues were detected but the fact is that did NOT stop the publication and the line of research.” Unquote.

    I suggest starting from a reductionist point:

    Study = Pathogen role in an illness characterised by substantial gender differential:

    Study produces 67% positives in patients, 4% in controls . How does this fit with an illness that is present in a patient population that is 66% female ? Either there is some unexplained differential in exposure (questionable given the global prevalence), or (uniquely) there is preferential infection mediated by gender. Both circumstances suggest great caution in accepting the results of the study at face value.

    My interpretation how this played out in the Lombardi study, is that at no point, either in the process of hypothesis formation, in the process of research or in the peer review, was anyone with an understanding of the epidemiology of M.E/CFS involved. My contention is that the lack of questioning applied to the Lombardi et al work, was axiomatic in blinding the researchers to the probability that XMRV was a lab artefact. This blinding was IMO further enhanced by confirmation bias engendered by the WPI which lacked as an institution, the necessary sceptical checks and balances required by a research body.

    Glass half full = science got there in the end

    Glass half empty = Inadequate rigour, insufficient epidemiological reference, lack of prior plausibility applied as reference point, lack of institutional strength, lack of peer reviewer scepticism, led to unnecessary concern and consequent expense, without advancing understanding of the illness supposedly being researched, although serendipitously a major contamination issue was identified. Apart from costs incurred by institutions and governments, lets not forget that the lack of clear science allowed a situation in which patients were exploited by the marketing of tests for which could have had no medical benefit. IMO science (Science !) could have served those patients better had the Lombardi et al study been considered far more sceptically.

    IVI

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