All between the ears? Homeopathy and experimental treatments for chronic fatigue syndrome

On Monday,  Belgian endocrinologist Francis Coucke appeared before the ‘Orde van Geneesheren’, a national body responsible for enforcing standards within the medical profession. Dr Coucke risks a two year suspension from the profession because his treatment (gamma globulines and home TPN) of patients with the chronic fatigue syndrome (CFS) has been deemed non-scientific: it has not been proven to work in large studies. Last year, he and a neuropsychiatrist colleague were required to pay a 635,000 euro fine for prescribing medicines not licensed for CFS to CFS patients. The fine was imposed even though special authorization for the prescriptions had been granted by the medical advisor to the national healthcare service.

CFS is a controversial condition. Internationally accepted criteria for CFS are: chronic, disabling fatigue for six months or more, where the fatigue is not the result of excessive ongoing activity, is unresponsive to rest, is associated with other symptoms (such as sleep changes, poor concentration, muscle and joint pains) and is not caused by any detectable underlying medical or severe psychiatric condition.[1] There is, however, little agreement about the nature of CFS, its etiology, or even its existence. One rather widely accepted view is that it is caused through stress but can be triggered by an infection, a difficult delivery, or a whiplash. Others, like Dr. Coucke, think it has physical causes, most of which could be addressed if looked for and found. But many think it is a purely psychosomatic condition. In a recent Belgian newspaper article about the Dr Coucke case, a Belgian internist from the University of Leuven calls doctors who think CFS has physical causes ‘quacks’.

Quacks. When I think of quacks I think of homeopaths. But it seems that homeopaths have it easier in Belgium than Dr Coucke. Homeopathic products can be sold as medicine by pharmacists and their costs are partly covered by the major health insurance companies. (Fortunately there is some opposition to this. For example, a Belgian group committed mass ‘suicide’ by taking overdoses of homeopathic products, an action that will be repeated on Saturday 5 February in 25 European countries.) How is this tolerance toward homeopathy consistent with the suspicion towards Dr Coucke, and other doctors who believe CFS may be caused by physical aspects?

Dr Coucke’s hypothesis may not be the most plausible one at this moment, and his therapies are experimental, but they still seem different from the homeopathic products or treatments that not only haven’t been proven to work, but have been shown to be extremely unlikely to work. This is not the case for the treatments provided by Dr. Coucke and his like-minded colleagues.

Perhaps it is the fact that homeopathic products can be used independently of medical doctors which makes the difference. Rules for what medical doctors can prescribe must be more strict because medical doctors have special responsibilities which providers of homeopathy lack. But it is not clear that this justifies the different responses. After all, many other products that can have a significant impact on people’s health are strictly regulated, like food.

Or are there no risks attached to homeopathic products? If they don’t work, they can’t harm, right? Unfortunately, that’s not true. Although, the products themselves are safe (hence the homeopathic suicide actions), the fact that homeopaths replace doctors as sources of medical advice, and that homeopathy replaces conventional treatment may be extremely harmful for patients in need of real treatments.

The treatment Dr Coucke provides doesn’t harm CFS patients in this way. It is not as if his patients would otherwise be helped by conventional medicine. These patients typically have a long history of doctors’ visits, being sent from one doctor to another. Often they have had to hear over and over that it’s all between their ears, that they should just take it easy. This largely explains why Dr Coucke’s patients – the ones that are to be protected by his suspension – are in fact standing up for him. Those fit enough hired buses and protested in front of the disciplinary tribunal. They are afraid that with his suspension, they will lose their treatment, or all hope for one.

Of course, Dr Coucke’s treatment may do more harm than good, and these patients may be so desperate to get better that they would undergo any experimental treatment. These patients are vulnerable and perhaps need protection against quacks (and Dr Coucke may be one) . But the same applies to other experimental treatments for other, less controversial diseases. Unless there are other reasons for sanctioning Dr Coucke that haven’t been spelled out in the newspapers, it is not clear to me why stricter rules should apply to his practice.

Moreover, if the concern is the patients, how come these patients (some estimates speak of 1 in 10 people suffering from it in varying degrees) are not taken seriously by conventional medicine? Could it be that, because there is no known physical cause, it is easiest to attribute it to hypochondria and other psychological causes? It is of course easier to say it is between the ears, and put it on a par with homeopathy and the like, than to start seeking the needle in the haystack by looking for a physical cause. This seems to be a common strategy of conventional medicine. Many diseases whose causes were unknown were thought to be between the ears, like multiple sclerosis, asthma and epilepsy.

Of course, even if CFS is between the ears, does that mean conventional medicine has no role to play in treating it? Perhaps there is something peculiar to chronic fatigue that prevents it from being taken seriously. Recent research published in the journal Fertility and Sterility indicates that undergoing IVF while being entertained by clowns doubles a woman’s chance of a successful pregnancy compared to standard IVF.  The article received plenty of attention in Belgian newspapers. It was happy news. We can make IVF more effective by making those undergoing it feel happier. But fatigue has a much more negative aura than infertility. Fatigue cannot be but your own fault or responsibility. Either you work too hard, or you’re too lazy, or you’re a hypochondriac.

Whether chronic fatigue has physical causes or is between the ears, conventional medicine, and society as whole, should take it seriously. And if it is severe, experimental treatments might sometimes be justified. Certainly, when there is some chance they might work – say, because there is a credible therapeutic mechanism – they are not in the same category as homeopathy and other paradigmatic examples of quackery.

References:

[1] Cleare A.J. (2004) The HPA axis and the genesis of chronic fatigue syndrome. Trends in Endocrinology and Metabolism; 15 (2): 55-59.

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21 Responses to All between the ears? Homeopathy and experimental treatments for chronic fatigue syndrome

  • John McMillan says:

    This is fascinating. I can't help wondering why he came to the attention of the ‘Orde van Geneesheren’. Presumbly, it is like the GMC in the UK and someone laid a complaint against him. Is one issue here using pharmaceuticals off label? (I.e. when they are not licensed for that condition)

    • Katrien Devolder says:

      Thanks for your comment. It’s the first time in Flanders such a fine was given for medication that was approved by the medical advisors to the healthcare provider. In this case, the provider was the Christian Health Service and it was this body that, having approved the medication, subsequently put RIZIV (the organization administering and auditing compulsory health insurance in Belgium) under pressure to investigate the case. The Christian Health Service (partly) reimburses medication and treatments to patients who are members. The complaint was that Dr. Coucke and his colleague didn’t apply the regulation for reimbursement of medicines correctly as the prescription behavior was very different to that of other doctors in approved CFS centers – there are 5 recognized CFS centers in Belgium using behavioral therapy and gradual exercise as therapy. I’m not 100% sure whether it was off label medication. It’s not clear from what I read in the media, but one article says it was medication not approved for CFS patients, so it may have been off label medication. Dr Coucke had to pay all the medication and consultation costs back to the RIZIV and the Christian Health Service. The convicted doctors claimed in the media that there is something else behind the RIZIV’s fine: “we’re a thorn in their flesh because the new treatment of CFS is fruitful.”…

  • John says:

    "Whether chronic fatigue has physical causes or is between the ears, conventional medicine, and society as whole, should take it seriously. And if it is severe, experimental treatments might sometimes be justified. Certainly, when there is some chance they might work – say, because there is a credible therapeutic mechanism – they are not in the same category as homeopathy and other paradigmatic examples of quackery."

    I'm not disagreeing with the above statement, but as a CFS patient I would rather it be treated honestly, for starters. If you think it's 'between the ears' then please say so so I can go about my business of trying to find a doctor who doesn't think I'm neurotic.

    The problem is that while the discussion has veered into the realm of CFS being 'real' vs. 'not real', and while some psychogenic proponents claim the whole matter is down to 'outmoded Cartesian dualism', the reality is that patients and biomedical CFS researchers believe CFS to be an organic disease process or processes which results in objective biomedical abnormalities and which needs comprehensive biomedical/pharmacologic treatments, while psychiatric CFS researchers believe CFS to be a primary behavorial disorder which is potentially accompanied by a few subsequent physiologic perturbations and which can be completely cured by behavorial interventions. Not only that, but these same psychiatrists are on record as saying it is 'unhelpful' to even have this discussion!

    These psychiatric researchers, almost exclusively in the UK and the Netherlands, also use an outmoded, outdated and non-specific case definition, the 1991 'Oxford' case definition, to diagnose their patients, which has the effect of including patients with anxiety disorders and depression in their patient cohorts which further muddies both the physiological and the treatment research literatures.

    Think along the lines of cancer vs. anorexia nervosa, except both are lumped together and called 'chronic weightloss syndrome'. Yes, both are characterized by weight loss, but to treat both of them as being one and the same, even if both were being treated 'seriously', would be an utter travesty. This is the exact travesty that CFS patients have been living with for the past several decades.

    To say that this is merely a matter of semantics or 'Cartesian dualism', which many psychiatric researchers do, is either monumentally stupid or comprehensively dishonest.

    • Katrien Devolder says:

      Thanks for your comment. I just wanted to say I totally agree with what you say in this paragraph

      "Think along the lines of cancer vs. anorexia nervosa, except both are lumped together and called ‘chronic weightloss syndrome’. Yes, both are characterized by weight loss, but to treat both of them as being one and the same, even if both were being treated ‘seriously’, would be an utter travesty. This is the exact travesty that CFS patients have been living with for the past several decades."

  • DCND says:

    Homeopathic medicines have worked for millions of people for a couple of centuries. The understanding of each remedy, the development of symptoms associated with a remedy is based on scientific methods. The manufacturing of homeopathic medicine is well regulated and controlled – atleast in the United States.

    Further, there are hundreds of peer reviewed research studies that document the clinical effectiveness of homeopathic medicines.

    You don't need a doctor to choose a remedy for self-limiting non-chronic conditions. The practice of homeopathy to treat chronic conditions and disease requires years of study and the process is often more like an art. I think this is where homeopathy is challenged and needs more research and understanding.

    I reject the idea that homeopathic medicines are a quackery because "research" is ignored by those who haven't done there due diligence to understand it.

    1) On Regulation http://www.homeopathicpharmacy.org/pdf/regulatory/BornemanFieldAJHP.pdf

    2) On Peer Reviewed Research http://www.homeopathic.org/content/homeopathy-research-evidence-base-references

  • Julia Rachel says:

    I am shocked and saddened that the Journalism in the UK is taking this barbaric approach to the reporting of such a serious biological medical disease, with such flippant comments "as between the ears" vs. Biological. CFS/CFIDS/ME has virulent, fungal, bacterium and a newly dicovered retrovirus engaged with this disease. These are proven scientific facts. I know, my son was in The Hospice Program due to these viruses and co-infections. Was the CFS between his ears? Yes, HHV-6A is a virus that integrates into the chromosomes and lives in the brain as well as the spinal fluid. It is found in AIDS, Cancer, MS, LUPUS, ALS, Lou Gehrigs and a plethora of other diseases. The new X retrovirus is so contagious; that in the past 70+ years it nhas spread 10X faster than what AIDS did in 4000 years. I wonder how many Brits are walking around infecting each other? And yess, stress does play a part in nthis disease. Only due to the fact that there is a cortisol receptor involved in the virus, which can activate the virus from latency witha life stressor. Has your newspaper staff been tested? You coulod be carriers, your children could be carriers, you mothers, your fathers….or you could be like me…your son may be dying from"what is between hhis ears". Julia Rachel. VLG on Valcyte Blog.

  • Peter Wicks says:

    The psychomatic vs biomedical debate here reminds me of the more general nature vs nurture debate, that is to say sterilely polemic. Obviously it's not going to be "either/or", at least not in general. As defined Katrien Devolders' post CFS is primarily a categorization of symptoms. From that perspective, contrary to what has been claimed above it is more analogous to "weight loss" than "cancer": weight loss is, like CFS, a symptomatic condition, while cance is a biological process, which (inter alia) can be a cause of weight loss.

    By the way, telling someone their condition is psychosomatic is not the same as telling them they're neurotic. You do not have to be particularly "neurotic" to suffer from a condition that has a primarily psychological origin. Nor does it mean you are "imagining" the symptoms. A typical psychosomatic disorder features real physiological problems such as muscular tension and high blood pressure. It's just that the underlying cause is psychological rather than something else.

    I certainly can understand the frustration and anger of those who have suffered, or whose loved ones have suffered, from a version of this syndrome that does have a biological cause (viral or whatever) in the face of people whose commitment to the "psychomatic" explanation causes them to refuse to countenance other possibilities. But neither should they go to the other extreme and themselves rule out the possibility that psychological factors are playing an important role.

    • Willow says:

      I think you missed the point of the example. The example was that chronic fatigue is a symptom, just like you mentioned that weight loss is a symptom. All symptoms have a cause, and the symptom of weight loss can be caused by cancer, by anorexia nervosa, or by something else. The symptom of weight loss is not a disease. It's a symptom (or rather a sign, but I'll class signs and symptoms together for simplicity).

      The symptom of chronic fatigue is also not a disease. This symptom can be produced by various causes. Various diverse causes of persistent fatigue can be collected together when an inclusion criteria like Oxford is used that just requires the symptom of chronic fatigue. This leaves the people with the severe neuro-immune disease (see references in my other post) that the disease title CFS was coined for (1) mixed in with the more numerous people with major depressive disorder, vitamin D deficiency, and other common causes of the symptom of chronic fatigue, which makes study results dysfunctional.

      1. Buchwald D, Cheney PR, Peterson DL, Henry B, Wormsley SB, Geiger A, Ablashi DV, Salahuddin SZ, Saxinger C, et al. "A chronic illness characterized by fatigue, neurologic and immunologic disorders, and active human herpesvirus type 6 infection." Ann Intern Med. 1992 Jan 15;116(2):103-13. PMID: 1309285

  • Willow says:

    It's not scientific to try to study, diagnose, or treat any disease based on a single symptom. The example given with weight loss–cancer and anorexia nervosa is a good one.

    Another example would be if you used the symptom of chronic breathlessness. Let's say Chronic Breathless Syndrome was originally designed to study patients with tuberculosis, but accidentally some bronchitis and other patients got mixed in, and the doctors got impatient that they couldn't identify a cause and they broadened the definition and then you had a lot of panic attack, deconditioning, obesity, plus some asthma and pneumonia. It would be really hard to identify any specific features of a disease under these circumstances, don't you agree? This is basically what has happened with ME/CFS.

    When looking at studies and deciding whether a biomedical/physical cause is realistic, you might want to broaden your scope of studies checked. Here are some very well-replicated studies (using the better, but still flawed, Fukuda inclusion):

    Fletcher MA, Zeng XR, Maher K, et al. "Biomarkers in chronic fatigue syndrome: evaluation of natural killer cell function and dipeptidyl peptidase IV/CD26." PLoS One. 2010 May 25;5(5):e10817. PMID: 20520837

    Jammes Y, Steinberg JG, et al. "Chronic fatigue syndrome combines increased exercise-induced oxidative stress and reduced cytokine and Hsp responses," J Intern Med. 2009 Aug;266(2):196-206. PMID: 19457057

    Cook DB, Lange G, DeLuca J, Natelson BH. "Relationship of brain MRI abnormalities and physical functional status in chronic fatigue syndrome." Int J Neurosci. 2001 Mar;107(1-2):1-6. PMID: 11328679

    Whistler T, Jones JF, Unger ER, Vernon SD. "Exercise responsive genes measured in peripheral blood of women with chronic fatigue syndrome and matched control subjects," BMC Physiol. 2005 Mar 24;5(1):5. PMID: 15790422

    Some more interesting studies:

    Milhaylova I, et al. “Decreased Expression of CD69 in CFS in relation to inflammatory markers: evidence for a severe disorder in the early activation of T lymphocytes and natural killer cells.” Neuro Endocrin Lett. 2007 Aug;28(4):477-83. PMID: 17693977

    Light AR, et al, "Moderate Exercise Increases Expression for Sensory, Adrenergic, and Immune Genes in Chronic Fatigue Syndrome Patients But Not in Normal Subjects," J Pain, 2009 Oct;10(10):1099-112. Epub 2009 Jul 31. PMID: 19647494

    Lo S, Komaroff A, Alter H. et al. “Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and in healthy blood donors.” PNAS 2010 Sep 7;107(36):15874-9. PMID: 20798047

    Chia J, Chia A, Voeller M, Lee T, Chang R. "Acute enterovirus infection followed by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and viral persistence." J Clin Pathol. 2010 Feb;63(2):165-8. Epub 2009 Oct 14. PMID: 19828908

    Peckerman A, LaManca JJ, Dahl KA, Chemitiganti R, Qureishi B, Natelson BH. "Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome." Am J Med Sci. 2003 Aug;326(2):55-60. PMID: 12920435

    Meeus M, Mistiaen W, Lambrecht L, Nijs J. "Immunological similarities between cancer and chronic fatigue syndrome: the common link to fatigue?" Anticancer Res. 2009 Nov;29(11):4717-26. Review. PMID: 20032425

    Hooper M. "Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research." J Clin Pathol. 2007 May; 60(5): 466-471. PMC1994528

    Maes M, Twisk FN. "Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways." BMC Med. 2010 Jun 15;8:35. PMID: 20550693

    Jason LA, Helgerson J, Torres-Harding SR, et al. “Variability in diagnostic criteria for chronic fatigue syndrome may result in substantial differences in patterns of symptoms and disability.” Eval Health Prof. 2003 Mar;26(1):3-22. PMID: 12629919

    Lerner AM, Dworkin HJ, Sayyed T, Chang CH, Fitzgerald JT, Beqaj S, Deeter RG, Goldstein J., Gottipolu P and O’Neill W. “Prevalence of abnormal cardiac wall motion in the cardiomyopathy associated with incomplete multiplication of Epstein-Barr Virus and/or cytomegalovirus in patients with chronic fatigue syndrome.” In Vivo. 2004;18:417-424.

    Sheedy JR, Wettenhall RE, Scanlon D, Gooley PR, Lewis DP, McGregor N, De Meirleir KL, et al. "Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome." In Vivo. 2009 Jul-Aug;23(4):621-8. PMID: 19567398

    Siemionow V, Fang Y, Calabrese L, Sahgal V, Yue GH. "Altered central nervous system signal during motor performance in chronic fatigue syndrome." Clin Neurophysiol. 2004 Oct;115(10):2372-81. PMID: 15351380

  • Three Chord Monty says:

    Well, it's good to see that the necessary vigilance to not rule out psychosomatic issues in CFS is in no danger of abating. Surely the earth would stop spinning on its axis if such a fate were to befell medical science.

    Oh, and making sure to rebuke a patient for not stating properly that a psychosomatic/psychiatric condition can indeed produce physical symptoms, real ones, even, well done. An opportunity to educate a person projecting a defensive tone should never go to waste.

    But there's a problem here, and I'm going to apologize in advance for this lengthy and somewhat off-topic post; in my view it is painfully necessary.

    Some make much of 'subsets' in CFS. I'm not really addressing that topic as it is typically discussed, but I'm going to use that term, albeit with a limited and specific focus.

    We have two major subsets under the 'CFS' umbrella. The smaller subset suffers from a disease that was named myalgic encephalomyelitis, and is described in the international case definition known as the Canadian Consensus Criteria at least as accurately as in any other document.

    The larger subset includes people suffering from depression, anxiety, sleep disorders, psychiatric issues, somatization, and other conditions that, yes, are very real. There is much suffering amongst this group. But it is not the same. Not better, not worse, not more or less severe.

    Different.

    Yet due to an overlap of a few symptoms that are relatively minor in the smaller subset–fatigue, pain, sleep problems, and, yes, sometimes, depression–albeit secondary depression–both subsets share a common diagnosis. Now, depression can induce devastating fatigue, yes. And, heck, exercise is great for that, isn't it now.

    The 'fatigue' endured by the smaller subset is probably closer in many cases to paralysis, at least relative to how we perceive 'fatigue.'

    The larger subset is researched extensively. They respond well to Cognitive Behavioral Therapy and Graded Exercise Therapy. There is an evidence base for this.

    The smaller subset is substantially worsened by physical activity: the primary symptom in the CCC is post-exertional malaise. And few have bothered to actually research this. In fairness, however, I'm not sure it's been easy to measure, at least for research purposes, although there are outfits who have worked along these lines and appear to be making progress. It is my understanding that the Pacific Fatigue Lab performs clinical testing based on how patients respond to exertion after they've already exerted themselves.

    Which speaks directly to post-exertional malaise. What doesn't? Resting before going out in public, which many patients do before activities such as doctor's appointments. Where they show up looking relatively normal. No wonder some GPs view CFS as they do. They don't see the patient the next day, or the day after.

    All of this would be fine & well if the smaller subset had their physical issues addressed alongside the larger subset supporting the idea, clinically and in published research, that CBT & GET are effective treatments for ME/CFS.

    Oh, sorry–"CFS/ME."

    But they're not.

    And the NICE Guidelines aren't too kind to this smaller subset. Testing is discouraged; pharmacological treatments are discouraged. Mobility aids are discouraged. Makes sense–this is, after all, a matter of abnormal illness beliefs! We're in the business of rehabilitation! People aren't going to get better if they perpetuate their idea that they're physically ill if we provide them with mobility aids!

    I guess the idea of treating the larger subset is important enough that it's okay to ignore the smaller subset.

    And heaven forbid we should rule out psychological issues–that's what those militant patients do. We can't have that. Mind/body, don't you know.

    But I have a question.

    These other symptoms in the Canadian Consensus Criteria–autonomic dysfunction? If we can't rule out psychological issues, then surely the symptoms described must be linked to psychological issues somewhere. Hmmm? I mean, between OI, POTS, NMH, low blood pressure, low blood volume…surely there is research we can point to that links these to psychological issues.

    Because, heck, we must always remember that we can't rule those out!

    So…are there any such studies? Anything that points to a condition such as depression playing a major role in low blood volume? Somatization causing Neurally Mediated Hypotension? If vaso-vagal syncope is psychosomatic, it's news to me–I definitely want to see the literature on that.

    Wait a second. Are these symptoms listed in a more popular criteria? No? Of course not. Why would they be? Simon Wessely himself disparaged the CCC not long ago. (Of course, he also said on a BMJ podcast a year ago that even if CFS were proven to be caused by XMRV that it wouldn't make any difference, as his interest is rehabilitation–a fascinatingly honest statement, but that's a whole other story)

    So I guess tilt-table testing isn't that common in the UK for CFS/ME patients, now, is it. Heck, Peter White said it was unnecessary in an interview, now, didn't he.

    I'm not posting links because I don't want this to get caught in a spam filter. But I can. Regardless…

    …I must ask why this paradigm is necessary. Those who study CFS, particularly studies involving CBT and GET, have a large patient population to work with. What harm would it do to also do different types of testing on the CCC patients? If there's any chance their suffering might be addressed, let alone potentially treated, why would there NOT be research on CCC patients that would not be appropriate for the Oxford/Empiric cohort?

    I'm not really interested in ravings about the insurance industry or the government, even though there may well be truth in conspiracy theories. It's not helpful. Yet there is this patient population that is suffering terribly, and nothing is done. Zero.

    But we must not completely rule out psychological issues!

    That meme is something you should consider. It is not the innocent appeal to reason it appears to be. It is a leading misuse of a perfectly reasonable idea, a 'do you still beat your wife?' sort of statement. It's something that does not appear reasonable to contest.

    But when that leads to the psychology of the illness being pretty much the only aspect of it that ends up being funded, there's a problem. A big one.

    In this case it may have led to the proliferation of a potentially infectious retrovirus into the blood supply. Of course, there is plenty of evidence to suggest the link is not valid, but not one of those studies comes without serious flaws.

    One of the biggest ones is that not one of them has studied the same patient cohort as the original XMRV/CFS paper in Science.

    Nobody has done this, not even Harvey Alter–although Komaroff's Holmes cohort is closer to CCC than any other. Coincidence?

    Wait. What was that? Harvey Alter? Who? The researcher who was instrumental in the discovery of Hepatitis C?

    Yeah, him.

    The guy who published a study he characterized as a confirmation of the original paper. Funny thing, though.

    It was a fairly major news story in most Western countries…but, strangely, not the UK. Oh, there was a piece in the Daily Mail–online. And the Guardian had a comments thread slammed on an unrelated matter for not covering the publication of Lo et al in the Proceedings Of the National Academy of Sciences, so they ran the Associated Press feed three days later. That was about it, except for, oh, New Scientist, Nature…not exactly tabloid newspapers. I guess Steve Connor didn't consider it worthy of mention.

    Since that last sentence makes absolutely no sense, then there must be a better explanation, but I will leave it at that.

    The contrast between this lack of coverage and the coverage of the original paper, as well as the subsequent negative studies–and most especially, the recent contamination papers published in December in Retrovirology–is, well, stunning.

    Do a search for Lo et al, the Harvey Alter CFS paper, in UK publications.

    Slim picken's.

    Oh, but they didn't find XMRV. Maybe that's why.

    They just found some other retrovirus that's mighty similar.

    Well, that's okay, then.

    Heck, I'm sorry for the hijack. I just can't stop chuckling about how that paper was so sparsely covered. Where was I?

    While I gather my thoughts, let me again remind everyone that we should not discount psychological issues in CFS/ME. Very important. Now, let's see…

    Oh, yeah. An infectious retrovirus in the blood supply. Quick, let's get that PACE study published. Because what we really need is another study on CBT & GET as effective treatments in CFS/ME.

    We certainly don't need anything that deals with this Canadian Consensus thing. Who ever heard of such a thing? The CDC doesn't recognize it, of course! And they know what they're doing. They call people up on the phone in Wichita & Georgia & ask them if they're fatigued.

    Then they study them. In useful ways, such as finding links to childhood abuse. And personality disorders. I think it's pretty clear that Peter White has been helpful to them in their studies on CFS.

    I mean, it can't be a coincidence that after he was brought in by Bill Reeves, that the CDC boldly trumpets the childhood adversity study; their own negative XMRV study; a list of treatments including, you guessed it, exercise & CBT; a list of tests that they say is not helpful in diagnosing CFS–you know, like that dastardly tilt table test, stuff like that.

    And they say that there are no immunological abnormalities in CFS, too.

    Would it be a stretch to suggest they define CFS as something present in the larger subset I described above? That those in the smaller subset don't actually have what they are defining CFS as?

    That they have something else that the CDC has never bothered paying much attention to?

    That would be "ME."

    I must say, the paper they published on XMRV was quite revealing. In it was a comment on the cohort studied by the Whittemore-Peterson Institute–one that was diagnosed with CFS according to both the CCC and the CDC's Fukuda criteria.

    They wrote that this cohort may not actually be a proper CFS cohort–because if they qualified for a CCC diagnosis, then biological abnormalities may be present that are exclusionary for a CFS diagnosis. Included in a list of examples they provided of physical symptoms that may indicate the presence of a condition that would preclude a CFS diagnosis was…tender lymphdenopathy.

    But that's one of the 8 Fukuda symptoms.

    So, if you are CCC, maybe you can't be Fukuda, because…you might have a symptom…that's listed in Fukuda.

    It's there, go ahead & look. Retrovirology published this last summer.

    Now, I'm going to disagree flat-out that a proper analogy leans more towards weight-loss than cancer. Why? I mean, that seems like an extreme position on my part, right? I can't possibly be comparing CFS to cancer when a weight-loss analogy is more appropriate. Right?

    Well, to that, I ask: do you have evidence of this?

    I will also tell you that anecdotally, there are people have dealt with both cancer and CFS. They have said flat-out that dealing with CFS was far more debilitating physically than going through chemotherapy. Of course, yes, that is anecdotal. But I ask that you consider it.

    Why? Because it might well be true. You are aware of the oft-quoted snippet of Congressional testimony from a Dr. Marc Loveless back in 1994? A doctor who worked with both AIDS and CFS patients, he stated that the physical disability in CFS is comparable to late-stage AIDS–specifically, the condition of an AIDS patient in the last two months of life.

    And of course in October of 2009, another clinician who treats both AIDS and CFS patients, Nancy Klimas, stated pointedly that were she to have to choose, given treatment options, she would choose HIV if she had a choice of which to be stricken with.

    But we can't rule out psychosomatic issues! There can't be an either/or!

    Well, you know what? Unreasonable as it may seem on the surface, I'm going to respectfully suggest that not ruling out psychological factors hasn't really done anybody any good. Could this situation be any worse if we actually did such an unspeakable thing?

    Is it possible that the CCC is actually the most accurate case definition for what I am informally describing as the smaller, "ME" subset?

    What harm could possibly come of such an action? Is it possible we might move towards not having to ponder the fates of Ean Proctor, of Lynn Gilderdale, Sophia Mirza?

    Oh, but that's a short list of exceptions, isn't it.

    Well, I say it's a valid one. And I say that people are locked away in their bedrooms, suffering for decades without diagnosis or treatment. I say there's a much longer list that nobody knows about. And the only treatments available to them are CBT & GET.

    How do you expect CBT will work on OI/POTS/NMH? On low blood volume and neuroendocrine symptoms?

    We're not going to find out in the PACE trial.

    It's not going to tell anyone how when a CFS patient develops a fatal condition, say heart disease, or lymphoma, that…voila! They no longer have CFS. Such a condition is exclusionary, after all.

    So it doesn't matter if someone suffered for decades, doesn't matter if CFS actually played a role in a condition such as lymphoma. It should matter, but it doesn't.

    Because nobody studies that.

    Why would they? Once you don't have CFS anymore, you don't. End of story. What's to study?

    Why would anyone study such a thing? Because, after all, we can't rule out psychological factors.

    Ever.

    I'd say the chances that you actually comprehend the frustration you claim to understand are actually not very good.

    I know I probably should have approached this in a way that doesn't attack specific segments of your post. But I did it for a reason, and if I took you out of context, then so be it. This rebuttal had to happen even if maybe you did not deserve to be scolded.

    And maybe you understand, more than I realize. So, I'll put it to you that I'd be happy to be wrong about your take on this, and I invite you to prove it to me.

    As for the admittedly lengthy off-topic rant, to the blog owner, I won't apologize, because I can't. I believe what I wrote deserves an airing on a blog dealing with ethics. I don't really quarrel with your position on homeopathy, but I will say there's a better case to be made for the doctor.

    And if you're going to write about CFS, well, you don't have to mention ME, although you should consider doing so. But your title says 'chronic fatigue,' which is a symptom of many illnesses. I'm going to call you on this improper reference, even if it is petty and even if it is merely a matter of political correctness.

    If you're going to write about something I would respectfully suggest that it behooves you to understand the difference between 'chronic fatigue' and 'chronic fatigue syndrome,' and the very real importance of specifying the diagnosis and not the symptom in a title. It's bad enough that medical authorities have interchanged a symptom for a disease; if we are to make any progress in trying to solve this very real problem, every little bit helps.

    So if you care about this problem which you chose to write about, I suggest a perusal of the Canadian Consensus Criteria, and then compare this to the common view in Belgium that CFS is all between the ears.

    If there is published research that links the symptoms in the CCC to somatization, I will call as much attention to it as I possibly can, and I will be the first to acknowledge that the emphasis on psychological issues has been appropriate all along.

    Of course, XMRV is a very serious wild card in this equation. It would explain a lot.

    There's also a lot it wouldn't explain. Like perpetually emphasizing that we cannot eliminate psychological issues–and how CFS patients have been treated by those whose focus lies exclusively in that area, to the detriment of the patients.

    The 'all between the ears' crowd would have a lot to answer for. Don't you think?

    Oh, well. It will be awhile before that's all hashed out. Meanwhile, Greg Towers said 'XMRV is not the cause of chronic fatigue syndrome' even though the paper he co-authored said no such thing, and, frankly, it is preposterous to arrive at that conclusion at this stage. Especially given Lo et al.

    Maybe Greg Towers didn't see that one. He would have had to look for it.

    Like the Canadian Consensus Criteria, maybe people who take even a casual interest in this should take a look at these. They're easy to ignore. But taking the time to look at them just might prod a reasonable person to consider looking at this disgusting and pathetic situation just a bit differently.

  • Three Chord Monty says:

    Thank you for amending your title. It seems petty on the surface, I know. unfortunately, it's not that simple.

  • Peter Wicks says:

    Three further comments from my side.

    1. The reason I regard weight-loss as a more appropriate analogy for CFS than cancer was that both "weight-loss" and "CFS" seem to refer signs/symptoms (I take Willow's point that the two are not the same) rather than underlying conditions, as currently defined. I am not in anyway disputing that in some cases the cause if CFS is essentially biomedical, nor did I intend to suggest that psychological factors are being under-emphasized in practice. I wouldn't know. I was rather addressing the quality of the debate from a rational perspective. This is a philosophy blog after all, not policy debate.

    2. Whether cautioning against ruling out psychological factors is "an innocent plea to reason" or a "leading misuse of a perfectly reasonable idea" depends on who is using it and for what purpose. In my own life I have found it immensely helpful to interpret certain symptoms as having a psychological cause, particularly now that genuinely effective therapeutic tools have now become available. Having gone through this myself may well have created a bias in favour of interpreting other people's symptoms similarly, but I don't think this quite counts as a "leading misuse". It's of course perfectly possible that others do (mis)use it in is way, deliberately or otherwise.

    3. Finally regarding Wessely: once again I'm reacting to what I read here, I know nothing about this person, for all I know he could be a schmuck. But I have some sympathy for the idea that if he has a rehabilitation method that seems to work for the patients he treats then that's what's important, rather than better understanding the causes. It's essentially an empirical rather than a diagnostic approach. It's saying, "I know from experience that this method works, so no information about the cause of the condition can possibly change this conclusion. That being said I agree that the statement seems to reflect a worrying lack of interest: his methods might work, but other methods inspired by better knowledge of the causes might work even better.

    • Willow says:

      1. That is the point, exactly Mr. Wicks. Who in their right mind would study weight loss or say weight loss was a proper designation of a clinical disease?

      So why–WHY–is chronic fatigue considered a proper designation of a clinical disease?

  • Peter Wicks says:

    My point was a slightly different one. I don't fundamentally object to the label "chronic fatigue syndrome" as a catch-all for various conditions characterized by chronic fatigue. And there *is* a difference with weight loss (basically the sign/symptom distinction as I understood your previous comment), in that weight loss isn't necessarily a "problem" – on the contrary it's often desirable – whereas chronic fatigue clearly is.

    I'm not an expert on medical classifications, but I would guess that this kind of symptom- (as opposed to cause-) based classification is common for conditions whose actual causes are, at least in some cases, poorly understood, but also when they tend to be recognized by patients by their symptoms but can have different causes. (Think, for example, prostitis, another condition that may or may not be a sign of cancer, orolymyalgia, which is basically Greek for "a lot of muscles hurting".) I don't personally find this "unscientific" in itself. What's unscientific is when it is assumed that the condition always has the same cause, and you end up with these sterile "either/or" debates. As more becomes understood about this condition, it may well be appropriate to change the terminology so as to differentiate better between the differently-caused conditions.

    • Willow says:

      The "weight loss" under discussion here was that related to being underweight, such as that which would be related to cancer, anorexia nervosa, and other diseases (that's the context in which it was brought up). No desirable weight loss is included in the discussion, only various conditions which lead to being underweight.

      If we just took a bunch of patients who were underweight and decided it was too time-consuming and too expensive to decide why they were underweight, so we should simply treat them all as if they had anorexia nervosa no matter whether that was their actual problem or not… THAT is what is being done to people with a diagnosis of CFS.

      The very thing which you called unscientific (assuming that a symptom always has the same cause) is what's being done–that's what we are complaining about. All people labeled with CFS are assumed to have a primarily psychosocial problem, regardless of whether there is any evidence for this in any particular ME/CFS patient or in the patient population as a whole.

      These people labeled CFS fall into two main groups:
      A) people who have other identifiable disease who would be better served under another diagnostic classification where they would have more treatment options (MDD and similar diseases as well as Lupus, classic MS, also Vitamin D deficiency and similar, plus rare but diagnosable diseases)
      B) the people with the neuro-immune disease the definition was written for–there actually is a lot of evidence about things that are going on generally in this group, and within subgroups of this group. Such evidence gets dismissed because of largely political reasons. This is tolerated by the scientific community evidently because most haven't taken the time to notice that the patients labeled with CFS from groups A and C are not pertinent to the specific disease of CFS.
      C) additionally, there may be some people with as-yet-unidentified diseases; a bit hard to tell under the current system where any fatiguing condition a doctor doesn't have the patience to deal with, gets lumped into one or two categories (under the Oxford system, it's all called CFS [A, B, and C]; under the Fukuda system, everything that doesn't meet criteria for CFS [B plus a little from the other groups] is Idiopathic [undetermined] Fatigue). These are also best served by dividing into as discrete groups as possible and studying separately. Again, you can't figure out what's wrong with anyone, or how to help any one, by studying COPD, pneumonia, and panic attack lumped together simply because they all happen to have breathlessness.

      You suggested CFS was for cases of fatigue that were difficult to figure out. Difficulty is in the eye of the beholder, in a sense.

      Here are some of the problems in research:
      * ME/CFS patients have differing infections
      => so do Guillian-barre and pneumonia patients, but we can identify, legitimize, and treat these patients

      * ME/CFS patients have differing clinical presentations
      => so do Lupus and multiple sclerosis patients, but we can identify, legitimize, and treat these patients

      * ME/CFS research is funded barely at all. The tiny funding that does exist is used to repetitively study incidence, diverted to unrelated projects, and used for exclusively psychiatric research. Very little of it is used for biomedical research. (Please don't go all "either/or" on me–I'm pointing out an either/or problem here)

      Here are some of the most common ways to assess a fatigue patient: (note "you" is generic for some doctor who is doing the assessing)

      * don't do any assessments at all. Tell the patient a lot of people are fatigued and hope the patient's problem (or the patient) goes away. (Or, assume doing investigations would reinforce the "maladaptive illness beliefs" you have been told to assume the patient has [but which idea is actually contradicted by objective evidence from research].)

      * just do the same labs you would do for an ordinary physical in a patient with no complaints at all. You would find the problem if it were anemia, some types of thyroid disease, and a few expected things like that, but not much else.

      * do the labs for an ordinary physical plus whatever other tests occur to you. Refer to specialty if it occurs to you. This approach could catch Lupus, Muscular dystrophy, some more kinds of thyroid problems, a few other expected diseases possibly including Multiple Sclerosis.

      None of these approaches will show what is wrong in ME/CFS. It's like before we had MRI and many MS patients were labeled "hysterical paralysis." Only we actually do have tests to show what's wrong in ME/CFS, but they normally aren't used. Some of them aren't routinely available, but some are. Ironically, some ME/CFS patients have MRI abnormalities. None of these tests are generally used because doctors aren't told what tests are useful–in fact they are specifically told not to use any of the tests found to be useful in Fukuda-CFS because they don't also apply to Oxford-CFS (again, including people with other diagnosable diseases which are distinguishable from group B above). Crazy, yes?

      If you test the function of NK cells (immune cells responsible for defense against viruses), there is a characteristic pattern of functional deficiency of these cells in ME/CFS patients (Fletcher et al., 2010).

  • Peter Wicks says:

    Aargh I need to improve my proof-reading. "orolymyalgia" should of course read "or polymyalgia". I know about this because my Mum had it. She took some pills and now she's better. God knows whether it was the active ingredients, a placebo effect, the healing effect of time (i.e. "reversion to the mean"), or some combination of the three (and perhaps other factors I haven't thought of. Like Simon Wessely I really don't care; I'm just happy that it worked.

  • Willow says:

    2. and 3.

    Maes M, Twisk FN. "Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways." BMC Med. 2010 Jun 15;8:35. PMID: 20550693
    <blockquote>BACKGROUND: In a recently published paper, Harvey and Wessely put forward a 'biopsychosocial' explanatory model for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is proposed to be applicable to (chronic) fatigue even when apparent medical causes are present.

    METHODS: Here, we review the model proposed by Harvey and Wessely, which is the rationale for behaviourally oriented interventions, such as cognitive behaviour therapy (CBT) and graded exercise therapy (GET), and compare this model with a biological model, in which inflammatory, immune, oxidative and nitrosative (IO&NS) pathways are key elements.

    DISCUSSION: Although human and animal studies have established that the pathophysiology of ME/CFS includes IO&NS pathways, these abnormalities are not included in the model proposed by Harvey and Wessely. Activation of IO&NS pathways is known to induce fatigue and somatic (F&S) symptoms and can be induced or maintained by viral and bacterial infections, physical and psychosocial stressors, or organic disorders such as (auto)immune disorders. Studies have shown that ME/CFS and major depression are both clinical manifestations of shared IO&NS pathways, and that both disorders can be discriminated by specific symptoms and unshared or differentiating pathways. Interventions with CBT/GET are potentially harmful for many patients with ME/CFS, since the underlying pathophysiological abnormalities may be intensified by physical stressors.

    CONCLUSIONS: In contrast to Harvey and Wessely's (bio)psychosocial model for ME/CFS a bio(psychosocial) model based upon IO&NS abnormalities is likely more appropriate to this complex disorder. In clinical practice, we suggest physicians should also explore the IO&NS pathophysiology by applying laboratory tests that examine the pathways involved.</blockquote>

    Carruthers, et al. “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols.” J CFS 2003. 11(1) http://www.co-cure.org/ccpccd.pdf

    Spotila J. "Post-Exertional Malaise: Perception and Reality." http://www.cfids.org/cfidslink/2010/080402.asp Review.

    <b><c>Understanding the ME/CFS research: Which CFS?</c></b>

    Merz S. [Chronic fatigue syndrome. More and more differential diagnoses suggest a new view of this syndrome]. Lakartidningen. 2002 Aug 22;99(34):3282-7. PMID: 12362846
    <blockquote>Several CFS definitions have been developed over the years, and it is common for investigators to erroneously compare studies based on different definitions, which nevertheless all use the term CFS. Much of our "understanding" of CFS does not apply to the small group of patients who fulfill the current (1994) CDC definition. </blockquote>

    Jason LA, Najar N, Porter N, Reh C. "Evaluating the Centers for Disease Control's Empirical Chronic Fatigue Syndrome Case Definition". J Disability Policy Studies. September 2009 vol. 20 no. 2 93-100.
    <blockquote>The authors’ research group proposes that selection criteria for CFS cases have broadened and provides data indicating 38% of those with a Major Depressive Disorder were misclassified as having CFS under the new CDC empirical case definition. </blockquote>

    Even the more specific of the commonly used definitions, Fukuda (1994 CDC), does not make the hallmarks of ME, such as post-exertional malaise, required as diagnostic/selection criteria, so one cannot tell how many study participants have ME (myalgic encephalomyelitis, G93.3, the infectious neuro-immune disease the first CFS definition tried to describe).

    Jason et al. “Politics, Science, and the Emergence of a New Disease: The Case of CFS” Am Psychol. 1997 Sep;52(9):973-83. PMID: 9301342 (free full text available; do a search)

    <b><c>Is CFS causally related to deconditioning, and does exercise improve ME/CFS? Does CBT?
    Is there any evidence to support the use of pacing?</c></b>

    Carruthers et al. "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" J CFS, Vol. 11(1) 2003, pp. 7-115 (pp 46-49). http://cfids-cab.org/MESA/ccpc-1.html
    <blockquote><i>Explains that most CBT/GET studies are done on fatigued patients using the name but not any specific criteria for CFS. Refusal and drop-out rates may be very high. Assessment is chiefly subjective. When used respectfully, cognitive therapy may be useful as an adjunct therapy. Some CF patients may see modest improvement from increased activity; but ME/CFS patients report adverse effects, consistent with the definitions and clinical and research findings. </i></blockquote>
    Reasons for drop-outs are not typically assessed or recorded in studies on GET and CBT (which is a departure from normal research standards). However, drop-out rates are generally considered a proxy indicator of harm or difficulty encountered, and patient surveys reveal a high rate of patients advising that GET made them worse. In fact, GET is rated the worst of all treatments tried. Yet GET remains a top recommended treatment.

    Price JR, Mitchell E, Tidy E, Hunot V. “Cognitive behaviour therapy for chronic fatigue syndrome in adults.” Cochrane Database Syst Rev. 2008 Jul 16;(3):CD001027. Review. PMID: 18646067
    <blockquote><i>Claims effectiveness based on</i> “symptoms of fatigue,” <i>a purely subjective measure, and states,</i> “The evidence base at follow-up is limited to a small group of studies with inconsistent findings. There is a lack of evidence on the comparative effectiveness of CBT alone or in combination with other treatments, and further studies are required to inform the development of effective treatment programmes for people with CFS.” </blockquote>

    Núñez M, Fernández-Solà J, Nuñez E, Fernández-Huerta JM, Godás-Sieso T, Gomez-Gil E. "Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up." Clin Rheumatol. Epub 2011 Jan 15. PMID: 21234629
    <blockquote> At 12 months, the intervention did not improve HRQL scores, with worse SF-36 physical function and bodily pain scores in the intervention group. Multidisciplinary treatment was not superior to usual treatment at 12 months in terms of HRQL. Although some studies cautiously conclude that exercise therapy is a promising treatment for CFS [14], the results of our study tend to support the somewhat controversial findings of Twisk and Maes [43] that the combination of CBT and GET is ineffective and not evidence-based and may in fact be harmful in some patients, a view supported by various surveys carried out by patient advocate groups [41].</blockquote>

    Nijs J, Zwinnen K, Meeusen R, de Geus B, De Meirleir K. "Comparison of two exercise testing protocols in patients with chronic fatigue syndrome." J Rehabil Res Dev. 2007;44(4):553-9. PMID: 18247252
    <blockquote>Symptoms are typically worsened after modest amounts of exercise [2], after increased daily physical activity [3], and after a maximal exercise stress test [4-5]. A delayed recovery from exercise typically occurs in patients with CFS [6]…. [further discussion of findings and problems of exercise in ME/CFS and of CFS assessment]</blockquote>

    Clapp LL, Richardson MT, Smith JF, Wang M, Clapp AJ, Pieroni RE. "Acute effects of thirty minutes of light-intensity, intermittent exercise on patients with chronic fatigue syndrome." Phys Ther. 1999;79(8):749-56 PMID: 10440661
    <blockquote> Although clinical findings and self-reported symptoms vary among patients with CFS, a worsening of symptoms, especially of fatigue, after previously well-tolerated levels of exercise continues to be the hallmark of this incapacitating disorder.[2–5]… Patients with CFS typically feel much worse after modest amounts of physical exercise. Some investigators have suggested the onset of severe symptoms to be 6 to 48 hours following exercise[25] and to last from 2 days to 2 weeks.[2,26]… some individuals with CFS may be able to use low-level, intermittent exercise [3 min sessions] without exacerbating their [condition].</blockquote>

    Nijs J, Almond F, De Becker P, Truijen S, Paul L. "Can exercise limits prevent post-exertional malaise in chronic fatigue syndrome? An uncontrolled clinical trial." Clin Rehabil. 2008 May;22(5):426-35. PMID: 18441039
    <blockquote> It was shown that the use of exercise limits (limiting both the intensity and duration of exercise) prevents important health status changes following a walking exercise in people with chronic fatigue syndrome, but was unable to prevent short-term symptom increases.</blockquote>

    <i>Note that both of the above are time-limited trials and do not measure the effect of an ongoing program over time. Nor do they asses how adding an exercise program might affect ability to carry out important ADL’s such as meal preparation.</i>

    Black CD, McCully KK. “Time course of exercise induced alterations in daily activity in chronic fatigue syndrome.” Dyn Med. 2005 Oct 28;4:10. PMID: 16255779
    <blockquote>Over the first 4-10 days of walking the subjects with CFS were able to reach the prescribed activity goals each day. After this time, walking and total activity counts decreased. Sedentary controls subjects were able to maintain their daily walking and total activity goals throughout the 4 weeks. Unlike our previous interpretation of the data, we feel this new analysis suggests that CFS patients may develop exercise intolerance as demonstrated by reduced total activity after 4-10 days. The inability to sustain target activity levels, associated with pronounced worsening of symptomology, suggests the subjects with CFS had reached their activity limit.</blockquote>

    Bazelmans E, Bleijenberg G, Van Der Meer JW, Folgering H. "Is physical deconditioning a perpetuating factor in chronic fatigue syndrome? A controlled study on maximal exercise performance and relations with fatigue, impairment and physical activity." Psychol Med. 2001 Jan;31(1):107-14. PMID: 11200949
    <blockquote>There were no statistically significant differences in physical fitness between CFS patients and their controls. Nine CFS patients had a better fitness than their control…. Physical deconditioning does not seem a perpetuating factor in CFS.</blockquote>

    VanNess JM, Stevens SR, Bateman L, Stiles TL, Snell CR. "Postexertional malaise in women with chronic fatigue syndrome." J Womens Health (Larchmt). 2010 Feb;19(2):239-44. PMID: 20095909
    <blockquote>The results of this study suggest that PEM is both a real and an incapacitating condition for women with CFS and that their responses to exercise are distinctively different from those of sedentary controls.</blockquote>

    Sorensen, et al. "Complement activation in a model of chronic fatigue syndrome." J Allergy and Clin Immunol. 2003 Aug;112(2):397-403. PMID: 12897748
    <i><blockquote>Activity produces immune response, which is associated with symptom flare (PEM).</blockquote></i>

    Lane RJ, Barrett MC, Woodrow D, Moss J, Fletcher R, Archard LC. "Muscle fibre characteristics and lactate responses to exercise in chronic fatigue syndrome." J Neurol Neurosurg Psychiatry. 1998 Mar;64(3):362-7. PMID: 9527150
    <blockquote>Muscle histometry in patients with chronic fatigue syndrome generally did not show the changes expected as a result of inactivity. However, patients with abnormal lactate responses to exercise had a significantly lower proportion of mitochondria rich type 1 muscle fibres.</blockquote>

    De Becker P, Roeykens J, Reynders M, McGregor N, De Meirleir K. "Exercise capacity in chronic fatigue syndrome." Arch Intern Med. 2000 Nov 27;160(21):3270-7.
    <blockquote>When compared with healthy sedentary women, female patients with CFS show a significantly decreased exercise capacity. This could affect their physical abilities to a moderate or severe extent. Reaching the age-predicted target heart rate seemed to be a limiting factor of the patients with CFS in achieving maximal effort, which could be due to autonomic disturbances.</blockquote>

    Kop WJ, Lyden A, Berlin AA, Ambrose K, Olsen C, Gracely RH, et al. "Ambulatory monitoring of physical activity and symptoms in fibromyalgia and chronic fatigue syndrome." Arthritis Rheum. 2005 Jan;52(1):296-303. PMID: 15641057
    <blockquote>Fibromyalgia (FM) and chronic fatigue syndrome (CFS) are associated with substantial physical disability… Patients with FM and/or CFS engaged in less high-intensity physical activities than that recorded for sedentary control subjects. This reduced peak activity was correlated with measures of poor physical function. The observed associations may be relevant to the design of behavioral activation programs, because activity levels appear to be contingent on, rather than predictive of, symptoms.</blockquote>

    Nijs J, van Eupen I, Vandecauter J, et al. "Can pacing self-management alter physical behavior and symptom severity in chronic fatigue syndrome? A case series." J Rehabil Res Dev. 2009;46(7):985-96. PMID: 20104421
    <blockquote>When comparing pre- versus post-treatment data, we found that the patients' ability to perform daily activities and the severity of their symptom complexes were improved (p = 0.043). Concentration difficulties, mood swings, muscle weakness, and intolerance to bright light improved as well…. We found that 3 weeks of pacing self-management was accompanied by a modest improvement in symptom severity and daily functioning.</blockquote>

    Lehman AM, Lehman DR, Hemphill KJ, Mandel DR, Cooper LM. "Illness experience, depression, and anxiety in chronic fatigue syndrome." J Psychosom Res. 2002 Jun;52(6):461-5. PMID: 12069870
    <blockquote>Those who believed that limiting their physical exertion was the path to recovery (55%) had lower depression and anxiety scores (P's<.01) than their counterparts.</blockquote>

    Jason L, Benton M, Torres-Harding S, Muldowney K. "The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS." Patient Educ Couns. 2009 Nov;77(2):237-41. PMID: 19356884
    <blockquote>Those who were able to stay within their energy envelope had significant improvements in physical functioning and fatigue severity. Health care professionals that treat patients with ME/CFS might incorporate strategies that help patients self-monitor and self-regulate energy expenditures.</blockquote>

    <b><c>Is ME/CFS related to coping skills or to psychiatric condition or personality?</c></b>

    Eleanor Stein, MD, FRCP(C), "Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for Psychiatrists" http://www.cfids-cab.org/MESA/Stein.pdf
    <blockquote>Rate of psychiatric disorder in ME/CFS similar to other chronic, disabling medical conditions such as RA; about 30-40% (Thieme et al, 2004; Hickie et al, 1990; Fiedler et al, 1996). Type of questionnaire can affect prevalence (50% using DIS vs. 25% using SCID) in ME/CFS populations (Jason et al, 2003); DSMIV is recommended (Spitzer et al, 1992; Williams et al, 1992).
    Rate of personality disorder is similar to that as the general populations (10%) and lower than in depression (Thieme et al, 2004) (Pepper et al, 1993; Saltzstein et al, 1998; Chubb et al, 1999). There are studies which report higher rates of psychological distress using the MMPI (Blakely et al, 1991) in CFS as compared with healthy controls, however it has been argued that MMPI is not an accurate assessment in people with chronic medical conditions because the items were derived and normed based with physical healthy subjects. When used in cohorts with chronic illness, the physical symptoms load to the ‘hypochondriasis’ and ‘hysteria’ scales resulting in false positives (Pincus et al, 1986; Goldenberg, 1989).
    Despite the preponderance of research to the contrary, a group of primarily British psychiatrists continue to publish that ME/CFS is caused and exacerbated by faulty self-perception and avoidance behavior. … [these] are personal opinions of the authors.</blockquote>

    Unfortunately, the CDC uses a similar unscientific convention, even citing some of these same British psychiatrists, whom they hire as consultants, even though the CDC professes to believe that CFS is "not psychiatric." Of course, Simon Wessely & co alternately claim "CFS" is psychiatric and not psychiatric.

    Trigwell, Hatcher, Johnson, Stanley, House. "'Abnormal' illness behaviour in chronic fatigue syndrome and multiple sclerosis." BMJ. 1995 Jul 1;311(6996):15-8. PMID: 7613314
    <blockquote>Scores on the illness behaviour questionnaire cannot be taken as evidence that chronic fatigue syndrome is a variety of abnormal illness behaviour. [any physiologically ill person, such as the MS controls in this paper, would produce the same result]</blockquote>

    Fossey et al. "Sleep quality and psychological adjustment in chronic fatigue syndrome." J Behav Med. 2004 Dec;27(6):581-605. PMID: 15669445
    <blockquote>Narcolepsy and CFS participants were very similar on psychological adjustment… Our data suggest that primary sleep disorders in individuals with CFS are underdiagnosed in primary care settings and that the psychological disturbances seen in CFS may well be the result of living with a chronic illness that is poorly recognized or understood.</blockquote>

    Courjaret J, Schotte CK, Wijnants H, Moorkens G, Cosyns P. “Chronic fatigue syndrome and DSM-IV personality disorders.” J Psychosom Res. 2009 Jan;66(1):13-20. Epub 2008 Nov 22. PMID: 19073288.
    <blockquote>RESULTS: The results indicate a striking lack of statistical significant differences between the CFS sample and the Flemish control group at the level of dimensional Trait scores, number of criteria, and prevalence rates of personality disorder diagnoses.</blockquote>

    Christodoulou, Deluca, Johnson, Lange, et al. “Examination of Cloninger’s Basic Dimensions of Personality in Fatiguing Illness: Chronic Fatigue Syndrome and Multiple Sclerosis.” J Psychosom Res. 1999 Dec;47(6):597-607. PMID: 10661606
    <blockquote>Both illness groups displayed similarly elevated levels of Harm Avoidance, and lower levels of Reward Dependence as compared with healthy controls. There was no evidence to suggest that patients with CFS possessed an unusual level of negativity that would have predisposed them to develop their illness.</blockquote>

    Taylor RR, Jason LA. "Sexual abuse, physical abuse, chronic fatigue, and chronic fatigue syndrome: a community-based study." J Nerv Ment Dis. 2001 Oct;189(10):709-15. PMID: 11708672
    <blockquote>Compared with healthy controls, childhood sexual abuse was significantly more likely to be associated with outcomes of idiopathic chronic fatigue, chronic fatigue explained by a psychiatric condition, and chronic fatigue explained by a medical condition. None of the abuse history types were significant predictors of chronic fatigue syndrome. </blockquote>

    Lehman AM, Lehman DR, Hemphill KJ, Mandel DR, Cooper LM. "Illness experience, depression, and anxiety in chronic fatigue syndrome." J Psychosom Res. 2002 Jun;52(6):461-5. PMID: 12069870
    <blockquote>Lack of illness legitimization ranked high as a source of dissatisfaction for CFS patients, and it may aggravate psychiatric morbidity. Many CFS patients believed that staying within what they felt to be their physical limits would improve their condition. This belief, and possibly an accompanying sense of control over their symptoms, may alleviate psychiatric morbidity.</blockquote>

    Brown MM, Brown AA, Jason LA. "Illness duration and coping style in chronic fatigue syndrome." Psychol Rep. 2010 Apr;106(2):383-93. PMID: 20524538
    <blockquote>A sample of patients with chronic fatigue syndrome was recruited to assess coping strategies and illness duration. It was hypothesized that adaptive coping strategies would be higher among those with longer illness duration. Those in the longer illness duration group reported higher use of active coping, positive reframing, planning, and acceptance, and lower use of behavioral disengagement than those in the shorter illness duration group. No significant differences were found between the two illness duration groups for physical impairment or symptom severity, but the long duration group revealed a lower percentage of participants who were working than the short duration group. These findings suggest that individuals with longer or shorter duration of the illness have differences in coping styles but not differences in physical impairment or symptom severity.</blockquote>

    <b><c>So what is the patient experience like?</c></b>

    Gilje AM, Söderlund A, Malterud K. "Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)–a case study." Patient Educ Couns. 2008 Oct;73(1):36-41. Epub 2008 May 16. PMID: 18486415
    <blockquote>RESULTS: CFS patients said that lack of acknowledgement could be even worse than the symptoms. They wanted their doctors to ask questions, listen to them and take them seriously, instead of behaving degrading. Many participants felt that the doctors psychologized too much, or trivialized the symptoms. Participants described how doctors' lack of knowledge about the condition would lead to long-term uncertainty or maltreatment. Even with doctors who were supportive, it would usually take months and sometimes years until a medical conclusion would be reached, or other disorders were ruled out. Increased physical activity had been recommend, but most of the informants experienced that this made them worse.
    CONCLUSION: Current medical scepticism and ignorance regarding CFS shapes the context of medical care and the illness experiences of CFS patients, who may feel they neither get a proper assessment nor management.
    PRACTICE IMPLICATIONS: CFS patients' reports about patronizing attitudes and ignorance among doctors call for development of evidence based strategies and empowerment of patients, acknowledging the patients' understanding of symptoms and the complex nature of the disease. </blockquote>

    Drachler Mde L, et al. "The expressed needs of people with chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review." BMC Public Health. 2009 Dec 11;9:458. Review. PMID: 20003363
    <blockquote>The review has shown that the lack of recognition of needs and poor support from the health and social systems further compromise socioeconomic status, activities of daily living, social participation and personal development, thereby exacerbating the impact of the illness in their lives.</blockquote>

    <b><c>The Politics</c></b>

    Editorial. “Frustrating survey of chronic fatigue syndrome.” Lancet 1996; 348:971. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2805%2964917-3/fulltext
    </blockquote><i>Characterizes the 1996 Royal Colleges report on CFS (which, while correctly acknowledging that CFS is serious and debilitating, stated that the nature of the disease was not only physical but also psychological in nature [and the psychological has been emphasized to the veritable exclusion of the physical]; no virus had any significant role in the disease process; since they could think of no evidence for pathogenicity related to “myalgic encephalomyelitis,” the name should be “Chronic Fatigue Syndrome”; rest therapy (or pacing) was not useful, but rather treatment should be CBT/GET) as </i>“haphazardly set-up, biased and inconclusive, and is of little help to patients or their physicians”.</blockquote>

    Hooper M. "Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research." J Clin Pathol. 2007 May; 60(5): 466–471. PMC1994528
    <blockquote>This review examines research findings in patients with myalgic encephalomyelitis in light of the current debate about this chronic multiple-symptom, multiorgan, multisystem illness and the conflicting views in medicine. These issues cannot be separated from the political opinions and assertions that conflict with science and medicine, and will be part of this review as they have enormous consequences for scientific and medical research, patients, clinicians, carers and policy makers. </blockquote>

    Twisk FN, Maes M. "A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS." Neuro Endocrinol Lett. 2009;30(3):284-99. Review. PMID: 19855350
    <blockquote>Benign Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a debilitating disease which, despite numerous biological abnormalities has remained highly controversial. Notwithstanding the medical pathogenesis of ME/CFS, the (bio)psychosocial model is adopted by many governmental organizations and medical professionals to legitimize the combination of Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) for ME/CFS. Justified by this model CBT and GET aim at eliminating presumed psychogenic and socially induced maintaining factors and reversing deconditioning, respectively.

    In this review we invalidate the (bio)psychosocial model for ME/CFS and demonstrate that the success claim for CBT/GET to treat ME/CFS is unjust. CBT/GET is not only hardly more effective than non-interventions or standard medical care, but many patients report that the therapy had affected them adversely, the majority of them even reporting substantial deterioration. Moreover, this review shows that exertion and thus GET most likely have a negative impact on many ME/CFS patients. Exertion induces post-exertional malaise with a decreased physical performance/aerobic capacity, increased muscoskeletal pain, neurocognitive impairment, "fatigue", and weakness, and a long lasting "recovery" time.

    This can be explained by findings that exertion may amplify pre-existing pathophysiological abnormalities underpinning ME/CFS, such as inflammation, immune dysfunction, oxidative and nitrosative stress, channelopathy, defective stress response mechanisms and a hypoactive hypothalamic-pituitary-adrenal axis. <b>We conclude that it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as CBT/GET.<b></blockquote>

  • Peter Wicks says:

    Thanks to Willow for a very informative and well-written comment. I take your point: from your perspective (and I have no reason to dispute this), people suffering from debilitating biomedical conditions are being falsely diagnosed as having psychosomatic disorders because of an unscientific lumping together of all patients with chronic fatigue combined with a funding fashion in favour of psychiatric research that is not justified by the evidence. Can we agree on that?

    I will still go a little bit either/or on you, though: I suppose that some people with chronic fatigue, and consequently diagnosed as having CFS, actually do have a psychosomatic disorder, in which case this is missing from your helpful breakdown of CFS subgroups.

  • Johan says:

    I like your article, but I have some remarks.
    A discussion about CFS is as good as useless without mentioning the definition (or criteria) you are using, and there are about a dozen of them: Fukuda, revised CDC, Oxford, CCC, revised CCC, empirical, Holmes, … Comparing the empirical or Oxford criteria with the (revised) Canadian Consensus Criteria, you might as well be comparing apples and oranges. In recent articles in Belgian newspapers and the "Artsenkrant" (magazine for medical doctors) they start out as an article on chronic fatigue syndrome and quickly reduce the disease to chronic fatigue. Is this such a big deal? Well yes, chronic fatigue syndrome as synonym of ME is a neurological disease according to the WHO, while chronic fatigue is a psychological illness. The word syndrome matters. Dropping it only further obfuscates the debate.

    I am also kinda wondering about "not licensed for CFS". If after a bloodtest a doctor is convinced it is necessary to give a patient gamma globulines and home TPN, can that patient still be considered a CFS patient according to the Oxford criteria which are used in Belgium?
    Another remark: dr. Coucke's treatment "has been deemed non-scientific: it has not been proven to work in large studies". Ironically, that statement is coming from people who support the official treatment of CFS in Belgium (GET and CBT) which has been proven not to work.

    I would love to see your post published as an article, opinion, or column in a Belgian newspaper, or even in the "Artsenkrant". It would be the most well-balanced article about ME/CFS of the past years.

    • Katrien Devolder says:

      Thanks for your comment Johan.
      Yes, maybe I should try to publish it in a Belgian newspaper. That’s a good suggestion. I will look into that. Thanks.
      Do you think I should say something more about the different definitions? I wasn’t sure whether you just wanted to clarify things or whether you think it is important to include this in my article (if I publish it in a Belgian newspaper)
      I totally agree with your last remark. Not very consistent. Thanks for pointing it out.

      • Johan says:

        The many definitions is something that distinguishes CFS from other diseases, so you "cannot" leave it out. It's the essence of what makes it so hard to understand, not only for the public, but also for politicians, journalists, and maybe even doctors. However, explaining the dozen or so definitions and their use would require a complete article, including the difference between chronic fatigue and chronic fatigue syndrome. You could of course stick to 4 definitions or criteria: the Fukuda criteria (were used in 2002 at the start of the CFS centra in Belgium when I got my diagnosis, still have a document from the Christian Health Service (CM) that mentions them), the Oxford criteria (now used by the CFS centra in Belgium and in UK), the empirical criteria (to my knowledge used by CDC in USA) and the Canadian Consensus Criteria (favorite criteria among patients, prof. De Meirleir (VUB) contributed to this document). So yes, IMHO you should mention that there is more than 1 definition or set of criteria for ME/CFS, even if it is just in a couple of lines.
        Looking forward to it. 😉

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