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My Reply To An Article By Shorter in Psychology Today

I just made this reply to the Shorter article, which now appears to be either members only or deleted:

https://www.psychologytoday.com/blo...essed/201502/chronic-fatigue-syndrome-is-back

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.

Comments

Alex,

I think it is fitting to counter the toxic psycho-somatic believe system with their own "medicine". I liked the first half of your "answer" very much.

However, your comment and that of many others does not go far enough.

You leave out the REAL human tragedy and destruction the psycho-somatic school of thought left behind.

It does not touch on the fact that mothers of children with ME/CFS and many times themselves suffering from ME/CFS, have been treated UNJUSTLY like criminals (even been arrested and locked up) because mis-informed health care professionals "believe" ME or CFS is not REAL and mothers are unjustly accused to cause their children's illness.

It leaves out the FACT that physically very sick children have been removed from their family -- forcefully --and locked up in mental wards, or place in foster care, and "treated" or more correctly tortured with exercise and cognitive behavior therapy, which lead to horrible deterioration of their already bad health.

It does not address the REAL trauma inflicted on children and parents who have gone through such battles with health care workers, social protection services or just "disbelieving" doctors.

It leaves out the FACT that mothers had to go in exile to save their children and themselves from such a fate.

It is does not address the very REAL trail of lives destroyed, homes lost, jobs lost and isolation because patients with ME or CFS are disbelieved, neglected and unaided.

Not to speak lives lost due to hope lost we will ever find the true cause and a cure to this devastating disease.

The psycho-somatic non-science has destroyed lives more than the disease itself.
 
Hi bambi, my reply was in direct counter to a specific blog. I have lots more to say about psychogenic failures. There is no question there is a deep failure of psychiatry and associated structures in society. Corrective mechanisms do not work. My next blog, which I am working on now, is about psychogenic theories and pseudoscience. Step by step I am building up a picture of what is going on. Operating outside of the law is part of it, but most of it is actually within the law. The problem is they have been given undeserved privileges, and lack the oversight to ensure those privileges are used properly. This goes way beyond the medical profession itself and into society and government.
 
Hi Alex,

I know it was a reply to the specific blog.

"The problem is they have been given undeserved privileges, and lack the oversight to ensure those privileges are used properly. This goes way beyond the medical profession itself and into society and government."

Exactly!

My point is that unless we clearly show society that this flawed self crowned non-science, as part of the medical system, is doing harm which has dire, real life consequences for people who are already vulnerable - sick children and mothers completely at the mercy of such monsters it will be not taken seriously. People don't realize what horrendous consequences such toxic idea's can have and that they gives privileges to people who misuse them for their own sinister purposes.

Have you read some of Finks publications ? Real chilling literature of a mad man if you ask me.

And add to this the fact that such insane people are receiving millions from the pharma industry, who in turn use them for their own "little" vested interests, is even more insane!
 
The biggest problem we face in exposing this is most of the evidence is suppressed by court orders, in part because mostly it involves children. Many patients who have been through this are also much sicker - its very hard for them to speak out, and doing so risks things like repeated sectioning. I am reminded of Russian practices of imprisoning dissidents or declaring them insane.
 
When you go to a DR in the USA you are basically being screen for known treatments. The drs have been turned into sales people, they just don't know it. We are already 100 years into 'symptom treatment' and disease care. This via Flexner Report with Rockefeller single handedly took over medicine. Medical school churns out expertly trained 'systems managers'. Most education has been reduced to this model.

You will be labeled, assigned DX and TX codes, and then stuck in an algorithmic treatment model. This maximizes patient throughput, and in turn profits. If you 'feel bad' then you are 'dysphoric' and you need Prozac. Of course, this is all you can realistically do, in 7 minutes (that is the duration of the average GP apt in the USA).
 
The high throughput algorithmic treatment of patients is not unique to the US. HMOs do indeed use it, insurance companies require it, but even in the UK we find that NICE has its quidelines, and they are doing it even here in Australia, though it is less visible. Doctors do not buck the system.
 

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