Reply To: Chronic Fatigue Syndrome is Back!
Edward Shorter Ph.D. Feb 19, 2015
By Alex Young, B.Sc., B.Inf., ME advocate, disabled.
The most important reply is: READ the report before making a judgment. This uses an evidence based review.
Apparently, according to the article, advocates have captured the IOM committee, despite the fact that the IOM is fiercely independent and is a highly credible organization. The history behind this is unprecedented in CFS or ME activism, as over 50 researchers and doctors opposed this move to have the IOM redefine the illness and supported an existing definition (CCC, Canadian Consensus Criteria) , and so did over 150 advocates and a great many patients.
The IOM report was a waste of money at a time when many biomarkers are under investigation and there is little funding to validate them. It was premature. In an illness costing the US over $20 billion annually, and for which only about $5 million in government funding is provided, a million dollars could have been better used further validating any of the potential biomarkers.
Also apparently CFS arose out of toxic beliefs from the 70s. This completely misses the 1934 Los Angeles outbreak that affected thousands, and the 1955 Royal Free Hospital outbreak, and many many more. The outbreak from Los Angeles was labelled atypical polio, while the 1955 outbreak eventually led to the label of (benign) Myalgic Encephalomyelitis (possibly in 1956, though the formal definition was three decades later)). The benign part was eventually dropped, as while it is not usually immediately lethal it is far from benign.
It was actually the 1970 paper by Beard and McEvedy that probably first proposed the idea that ME is a psychogenic disorder. See http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1700894/
This claim was never substantiated, as indeed no claim that any illness is psychogenic has ever been substantiated. If you want to look at history, lets look at diseases that were later claimed to be psychogenic. Tuberculosis? Hysteria (for which medical historians have decided the patients who were original cases were actually epileptics)? Diabetes (either type)? All cancers? Breast cancer in particular? Lupus, MS, rheumatoid arthritis, asthma, gastric ulcers, etc etc etc? The history shows that there are zero diseases in which a psychogenic cause was established, and a very large number I have yet to fully compile for which it was disproved. If anyone can prove otherwise, please cite the paper that proves any of these types of claims was right. I have had this challenge out there for some time, and so far I have received no credible response, the only response was to a paper that was irrelevant to the topic.
One of the arguments that psychogenic proponents like to use is that CFS is not real because it has no objective test. So is any psychogenic diagnosis more valid since it has no objective test? CFS, or ME, or SEID have far more objective evidence than any psychogenic claim.
Furthermore, the psychogenic claim rests on a known fallacy, formally called the Psychogenic Inference (named by Richard Sykes). Basically the fallacy is that if a cause is not known then it must be psychiatric. Yet the history shows that in time these claims are disproved as a cause or definite organic pathology is usually found after considerable research. Other possibilities are ignored in asserting the primacy of a psychiatric cause.
In advance of possible criticism that I am anti-psychiatry or anti-psychology, let me state my position is that both are necessary, that many people need help, but that basing help on unproven theory and poor science is not in anybodies interest. This includes the professions of psychiatry and psychology, as it eventually will lead to credibility issues and distrust from patients.
Myalgic Encephalomyelitis in particular is not about chronic fatigue. Many patients with ME do not have chronic fatigue at all, its not the hallmark symptom. The SEID definition cites this symptom: post exertional malaise. A rested mild patient might not be fatigued for months at a time.
The claim is that nothing has changed in the science behind ME, CFS or SEID, since 1992. It is easy to demonstrate however that most of what is important in the research in post 1995, and there has been accelerating advances since about 2007. I will return to this point.
Even as an opponent of psychogenic claims I would never claim there never will be any breakthrough. It remains an outside possibility, and a valid research question. Yet to date there is zero substantive evidence of the validity psychogenic illness that I am aware of.
I cannot disagree with the claim that the contract for the IOM report had at least some political issues. Yet the IOM process, which I am highly critical of, is generally considered to be highly independent.
The claim that patients hate a mental diagnosis or fear it, or fear the stigma, has not ever been substantiated in any quality study. I would really like Shorter or anyone to cite any quality study that shows this unambiguously. Its an unsubstantiated hypothesis that relies for its impact on emotional overtones, not evidence or reason.
The ME or CFS lobbies are often antipathic toward the Office of Women's Health. For a start, many patients are men. This office is not appropriate for this disease.
CFS, ME and now SEID advocacy is badly fractured. Its hardly organized. The level of disability, provable as I will show shortly, is very high, and patients usually make poor advocates for this reason. Consider that for even a mild patient, under most definitions, a loss of half their functional capacity is required. Very severe patients require constant care, tube feeding, and oxygen. Just a bit tired, even chronically, has never been an allowable criteria for a diagnosis.
The IOM report recommending SEID was based on an evidence based review. While I am a critic of many failings of such a methodology, its absurd to claim there was deliberate bias against critics. There is bias from the methodology, but its an agnostic bias.
Quote: How do you say to this kind of psychodrama: “We are scientists and insist on evidence other than the tireless repetition of your subjective complaints.”
Reply: if you actually read the report, and look at the five subcriteria, NOT ONE relies on subjective complaints. ALL are objectively verifiable.
The most problematic one is sleep dysfunction. While a typical patient has sleep issues there is high variability in what those issues are, though a sleep study should be mandatory for these patients.
This not the case for the other subcriteria.
Decreased functional capacity can be measured using an actometer.
Here is something that is deeply disturbing about the science and lack of science, and lack of recognition of the science in ME, CFS or SEID. Three of the most important tests, which are obvious, and taught at all leading medical schools, and available at all leading hospitals, have been systematically ignored.
Each of these uses 1940s technology, though in two cases the modern protocols and technical advances greatly enhance the usefulness of the tests. How can the entire medical community miss this until some doctors started running these tests in the 80s?
Here they are:
1940: Tilt Table Test, used to assess orthostatic intolerance. This started to be research again for CFS around 1995.
1946: Quantitative EEG. The modern version of this may be necessary, its not clear that older protocols would have worked effecively. A typical patient shows severe problems, but often in the lower brain not the higher brain functions. These findings were announced at Stanford last year.
1949: Cardiopulmonary exercise test. This began to be used for CFS in the 80s that I am aware of, but in 2007 it was shown that the hallmark of ME, post exertional malaise, is measurable using it. CPET can be used to demonstrate aerobic capacity in patients with many disorders. The crash in capacity in ME after exertion is measurable, and determined by running the test on two successive days, and to date is unique to this disease aside fron one single HIV patient. The claim has been made that using this test you can show even mild CFS has a worse impact than most other diseases, though I would like to see this data published in a peer reviewed journal. This test does have an issue though, as it worsens the health of patients, sometimes dramatically.
How can such obvious tests, which can clearly show pathophysiology, and are widely available and taught, be missed by most medical professionals for over half a century?
Quote: A big theme of the movement over the years has been hostility to exercise, which becomes a kind of Clockwork Orange nightmare for a society such as ours that believes in fitness and activity.
Reply 1: This is a huge distortion of the evidence. The biggest problem with ME patients (and this is from communicating with hundreds of patients on this, and many more agreeing with it) is that patients do not have enough adversion to activity or exercise. There is abundant and consistent anecdotal evidence that patients try to continue with their lives, or commence exercise programs, or other activities. From numerous patient surveys conducted over the years most forms of exercise have been shown to lead to worsening symptoms in at least half of the patients. This worsening is a big part of the SEID definition. Eventually patients learn to restrict activity to within their capacities, but as capacities improve patients typically increase their activity to match.
Reply 2: The two day CPET findings show a remarkable and consistent crash in aerobic energy production after exercise. Exercise physiology experts at the Workwell Foundation have shown this is not deconditioning, and claim the aerobic energy system cannot be reconditioned. Instead they have focused their treatment research on alternative forms of exercise include strength training.
Reply 3: Quoting a Clockwork Orange nightmare for societal belief in fitness and activity is a valid point, but not for the reason implied in the quote. Could it be that the rejection of ME, CFS and now SEID is a socially driven construct due to it conflicting with prevalent societal beliefs? Is that why opposition to scientific data on these issues is so vociferous, rhetorical, and lacking in substantial evidence and sound reasoning?
Reply 4: Research shows that the physiology in post exercise patients is extreme. Much of the bloodwork has yet to be independently validated however. Yet its hard to refute the sometimes dramatic changes in physiology found in, for example: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2757484/
Quote: But, rather than SEID, what many of these patients have is a kind of delusional somatization, the unshakeable belief that something is wrong with their bodies rather than their minds.
Reply: Somatization, or any psychogenic illness, remains unproven and hypothetical as has already been discussed. If a belief that is in violation of evidence is delusional, then the evidence so far strongly indicates that it is psychogenic proponents who are delusional. This is based on their reasoning, not mine. My position on this is actually much more complicated and nuanced, and I will publish on this over time.
Quote: The tragic element is that becoming involved with a CFS advocacy group is a recipe for lifelong disability, further entombing the patients in their symptoms.
Reply 1: This has never been demonstrated in any quality research. Please cite the research if you think it has been demonstrated. These kinds of claims are frequently made, and typically reference other unsubstantiated and similar claims. This is another case of emotional rhetoric substituting for sound evidence and reason.
Reply 2: It is instead the issue that treatment of CFS as somatization or other psychogenic disorder has never been demonstrated to result in substantive recovery. Using this logic why is it not a credible claim that seeing a psychiatrist for a psychogenic disorder usually leads to failure to improve? The evidence cited for psychogenic treatments is usually very weak, with effect sizes in the expected bias range, and have numerous and serious faults in experimental design. I can discuss a famous example if I need to. Where is the hard objective evidence of improvement from these approaches? To my knowledge it does not exist. Please cite a paper showing clear objective and clinically important outcomes if you think I am wrong on this.
Reply 3: Most if not all of the patients from, for example, the Royal Free Hospital outbreak in 1955 never belonged to what we would consider advocacy today. How come many of them remained severely ill for decades or the rest of their lives?
I encourage all health practitioners, including doctors and psychologists and anyone else who is interested, to look at the objective evidence. The IOM report reviews much of the evidence and has appropriate references, which is why I have not littered this reply with references.
From a patient perspective it is deeply ironic that many patients could benefit from psychological and psychiatric therapies to assist them in coping, but the unproven psychogenic claims frequently confound their efforts to find help. In the end most give up on psychiatry and psychology, and often on primary care practitioners as well.