Sunday, December 13, 2015

A postmodernist theory of medicine: "CFS/ME" and the PACE trials

What happens when a concept developed to analyze the arts, including literary criticism, migrates to medical science?  The concept is postmodernism, and it is a very strange philosophy for a science having to do with keeping human beings healthy.  Postmodernism is defined a bit differently depending on whether you are discussing postmodernism in architecture, the visual arts, or literary criticism.  However, there are a few basic elements:

  • Rejection of a metanarrative
  • Rejection of the modernist concept of progressivism - that knowledge improves over time
  • Emphasis upon perception over “reality” - to some extent, a rejection of reality itself in the belief that we can only know perception

I am sure there are other ways to characterize postmodernism, but I think these three precepts run through most theories based upon postmodernism.

In this essay, I am going to suggest that there is a school of British psychiatry called “biopsychosocial” which is effectively postmodernist - a most peculiar theory upon which to base the diagnosis and treatment of real human beings in real time.  The patients who have born the brunt of this school of thought are those afflicted with the condition Myalgic Encephalomyelitis (ME), which (by way of a detour through “chronic Epstein-Barr virus”) became known as “chronic fatigue syndrome” in 1988.  It’s not a minor or rare illness - millions of patients worldwide have the disease; over one million in the US and 250,000 in the UK. 

ME, the disease, is based upon a set of symptoms having to do with muscle failure, cognitive dysfunction, “unrefreshing” sleep, and pain.  Perhaps the most unique symptom of ME is a delayed response to exertion, what patients call a “crash,” which can last days or weeks or even become permanent.  The most seriously ill patients with this disease are confined to wheelchairs, bedridden, even on feeding tubes.  It would hardly seem the best choice for a medical theory of postmodernism.

In contrast, “chronic fatigue syndrome,” or CFS, fits the bill for postmodernism perfectly, because it is almost entirely based upon perception - the perception of fatigue.  

ME was first diagnosed in the 1950s to characterize three large outbreaks of disease in the UK, the most famous occurring at the Royal Free Hospital in London as a new term for a condition that had been observed since 1934, “atypical polio.”  With polio supposedly conquered by vaccine (which only contains the 3 strains of polio considered most severe), medical researcher and clinician Melvin Ramsay, along with several colleagues, sought to define a condition that appeared to occur in cluster outbreaks, like polio, but had somewhat different characteristics.  ME was adopted by the World Health Organization in 1969, coded within the chapter on neurological conditions in WHO’s International Classification of Diseases (ICD).  It remains there in ICD-10, the current version.

In 1970 and 1971, psychiatrists McAvedy and Beard published two articles claiming that ME was actually mass hysteria (interesting time - just as psychiatry lost the diagnosis of hysterical paralysis for Multiple Sclerosis, they found a substitute in ME).  Psychiatrists jumped on the name change to CFS in 1988 - in particular, a group of British psychiatrists who declared themselves to be practitioners of something called “biopsychosocial” medicine:  most notably Simon Wessely, Michael Sharpe, and Peter White.  

The “biopsychosocial” school consisted mainly of the claim that its adherents practiced a holistic vision of medicine combining biological, psychological, and social factors - but in practice, very little was ever said about biology.  When the biopsychosocial psychiatrists were asked about the absence of references to biomedical research in their work, they tended to snap back with the non sequitur that the suggestion showed an adherence to “Cartesian mind-body dualism,” and prejudice against psychiatry in general.  

According to these psychiatrists, “CFS” and “CFS/ME” (their terms) was caused by “inappropriate illness beliefs.”  The patient had actually had an illness such as a bad flu in the beginning, but instead of going back to their normal lives after the virus was over, they became afraid to do too much in fear that the symptoms would return.  The result of their inactivity, deconditioning, became the evidence that they were still sick.  The cure could thus be found in a specific form of psychiatric therapy, cognitive behavior therapy (CBT) - to teach the patient that she wasn’t really sick as she thought - and graded exercise therapy (GET) - to get the patient’s body reconditioned.  The combination of positive thoughts about improvement and actual improvement caused by the exercise would therefore “cure” the patient.

The biopsychosocial school, in practice, is postmodernism as medicine:

  • Rejection of a metanarrative - in this case, the authors claim to be rejecting outdated beliefs in “Cartesian dualism” that would differentiate between “biomedical” research and “psychiatric” research.
  • Rejection of modern concepts of progressivism - the authors reached back to the nineteenth century diagnosis “neurasthenia,” citing books written in the mid-1800s about “nervous disorders.”  Their research, they insisted, was not driven by pure theory but “evidence-based.”  “Evidence-based” obviously sounds like a good idea, except that in this case it was based upon “evidence” from clinics where patients had already been diagnosed using their theories - it was, in effect, a tautology.  But they could then insist they did not have to reference research driven by path-dependent theories linked by time, or answer to critiques of neurasthenia over the past 150 years.  They were only studying the present.  
  • Emphasis of perception over reality - the patient only THINKS he or she cannot behave like healthy adults.  It is the perception, these “inappropriate illness beliefs,” that need to be changed.  The cure, then, is to be found in treatments that change that perception both literally, through CBT, and changing the experience itself, through GET.  

It is in this context that I think we can best understand the £5,000,000 study commissioned by the UK government called the “PACE trials.”  The PACE trials were supposed to prove once and for all whether the prescription of CBT/GET could cure the disease the authors called “CFS/ME.”  Since the authors made their living - to a large extent - on the basis of this thesis, one would think the results would be evaluated using a fine tooth comb.  But no sooner had they been published than critiques arose from the community of patients afflicted with the disease, and those who either treated or studied it.  

Patients with backgrounds in medicine, science, and/or research were unable to break through to the public with their critiques.  Many of them asked to see the data behind the study to understand how the conclusions reached could possibly have arisen from the study.  Their requests did not exactly fall on deaf ears - to the contrary, the researchers complained both privately and publicly (in the press) that they were being harassed, the requests for data “vexatious.”  No data was released.  

Four years passed.

This fall, (2015), David Tuller, a Berkley journalism professor who had followed the disease for the New York Times and other outlets, wrote a detailed critique of the study, which was published on the blog site of noted Columbia virologist Vince Racaniello.  There it drew the attention of James Coyne, a clinical health psychologist who has spent several years focusing on deception in research.

In fast succession, a new request for data was filed - and refused. Queen Mary’s University London (QMUL) and King’s College London (KCL) both insisted that the request was without basis, that it was intended only to harass the authors - that is, that it was “vexatious” - and they refused to comply.

For an excellent rundown of where we were in the story as I wrote this essay (12 December 2015), see:

Elsewhere on this blog, Slightly Alive, you will find testimony to CFSAC and FDA on my condition, testing, and the experimental immune medicine which enables me to be able to write this essay. 

Here, however, I wanted to add something new to the debate.   What happens when theories inspired by postmodernism encounter a discipline that requires the belief that there is a there, there - there is a real patient, the real patient has a real body, and real things go wrong with that very real body.  The result sounds like scholarship.  It sounds erudite.  But in the end, you cannot separate perception from reality in this manner.  You cannot simply assume that the only problem with a patient is his or her perception of their health, on the basis that (in insurance industry language), the patients’ problem boils down to “medically unexplained symptoms” (which has even earned an acronym, MUS).  

Aside from the costs to the patients who actually have the disease in question, ME, these theories are very dangerous to the larger discipline of medicine.  Just because symptoms have no “medical explanation” does not mean they are based solely upon perception.  No physician can possibly explain every medical symptom - and there are conditions that have yet to be explained.  The absence of an explanation is not proof of the absence of a medical condition.

But in the world of “biopsychosocial” medicine, the absence of an explanation is precisely that:  proof of the absence of a medical condition - of a purely medical condition, they would probably say.

Medical science needs to understand that this theory does not just apply to ME/CFS, and does not just apply to “MUS” conditions.  Simon Wessely, for example, has already applied it to Gulf War Syndrome. 

This is an enormously useful political concept in the current atmosphere of austerity.  Applying CBT and GET is a lot less expensive than testing for immune defects and pathogens, looking at SPECT scans and CPETs, treating with immune modulators and antivirals.  

The British government, which has much to gain from this theory that “CFS/ME” is perception rather than reality, and these researchers, who directly profit from that theory, were hardly disinterested parties to join together in conducting the PACE trials.  The same goes for the institutions SMUL and KCL.

As such, they are not really in a position to reject mounting requests for an independent review of the study.  They should not be permitted the final say.  

The ramifications of their intransigence are great.  There are many conditions to which this new postmodernist view of medicine could be applied, greatly cutting costs without benefitting people in need of care.  The risk is greatest with chronic illness.  It is hardly a secret that both insurance companies and penurious governments are concerned about the mounting costs of chronic illness.  What a convenient theory for such an austere time.  

The authors of the PACE trials (and those who funded the study) must not be permitted to slip away without a thorough examination, because too much is at stake.  Postmodernism and medicine are not a happy coupling.  The effort to join them must undergo even more scrutiny than usual, because what is being tried here is most unusual.  

It is highly unlikely that the authors of the study willingly would allow that data to see the light of day, because so far the evidence suggests the data cannot support the conclusions - and too much is riding on those conclusions.  

If the most basic rules of scholarship are permitted to be broken here, where then will they be enforced?  CFS/ME is merely perception.  Global warming is just biased statistics.  “Fracking” has no effect on the environment.  That may be your “view”, but my “view” is just as important. 


After all, it’s only perception. 

19 comments:

  1. excellent analysis and history Mary. A small typo - you wrote that PACE was a £5,000 instead of £5,000,000 study.

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  2. An insightful blog post. Important to point out how political ideology is connected to how the sick and disabled are being viewed and abused.

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  3. Beard and McEvedy.. 1970 NOT 1980.

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  4. Here is some history. More general that focussing on ME/CFS .
    http://dpac.uk.net/2014/09/gordon-waddells-biopsychosocial-attack-on-disabled-people/

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    1. Yes, it is a good essay, and a must-read. They also own CDC. But they don't have to bother with fancy cooked-up theories here in the US - just say it's all caused by stress.

      It has always amazed me that the CBT/GET cabal insists they have no conflicts of interest, and get away with it. (Failure to reveal conflicts of interest when consulting for the US federal government - even for free - can be a felony.) Nobody seems to care.

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    2. Thinking about your article - you could say that the rejected metanarrative is (gulp) germ theory ...

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    3. Mary, I am considering adding something related,and I'll try to. Let me say now that POMO types are infected by the germ of Germanic anti - realism,a version of which is used by that cabal.

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  5. I want to link your post in the side bar of my blog if I may.

    Right now I'm going on 35 years with this "syndrome" and coming down with worsening symptoms like large muscle failures. Thank you for posting this.

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  6. I've had that - it's bad. Sorry.

    I once sat in on a presentation by someone who had infected monkeys with HHV-6A (which I have had active in my spinal fluid). The poor things sat in the corner of their cages, looking very miserable. Then they had one whose left leg was partially paralyzed like mine was at the time - they walked him around the room and he dragged it behind him and I said to the guy next to me - HEY - that's just like me!

    And he moved a seat away ...

    They eventually put them down so they could biopsy their brains (no comment on that) but they said towards the end they all got really cranky. No, really?

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  7. Thank you! This is truly a spectacular literary work! I'm an RN who was riding my bicycle 200 miles weekly, in addition to working full time and enjoying an active social life until I got the flu December 24, 2009. Among the multitude of physical complaints I had, one was that there was something wrong with my legs, they felt so heavy I could barely lift them, as though they were paralyzed, yet I could still will to move them. I was sent out to see multiple specialists as the months passed and I'll never forget the neurologist I saw. I begged him to help me explaining there was something wrong. I literally couldn't get up to even attempt to exercise anymore and was barely able to walk, even crawling at times from the bathroom back to bed! His reply to me was "Well, you need to start exercising"! I'll never forget the compulsion to reach across his desk and punch him right in the nose and ask him which part of "I can't walk" he didn't understand! I guess that must've been the phase of illness where I had convinced myself I could no longer exercise! Yikes, what an outrageous maligning of patients!

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