Changing Tactics

bigstock-Bear-Trap-38159869-e1370296224125For decades, ME/CFS research and clinical care has been plagued by disagreement over the basic classification of the illness. Is ME/CFS a physical disease, as many patients and researchers insist? Or is it a mental health disorder perpetuated by deconditioning, as argued by the psychosocial school? There is growing rejection of the psychogenic explanation for ME/CFS, but it is not disappearing. In my view, the psychosocial school is simply changing tactics, and this is a trap that we must avoid at all costs.

Transforming the Argument

The hypothesis that ME/CFS is a mental health issue has been disproved by the data. For years, the psychosocial school has claimed that CFS patients had poor coping skills and were simply deconditioned. All we needed to do was increase our physical activity (GET) and ferret out our dysfunctional illness beliefs (CBT), and we would recover. While the PACE trial and other research has been based on this premise, we have ample data that cuts the theory off at the knees. The two-day CPET (cardiopulmonary exercise testing) results cannot be faked, and distinguish ME/CFS patients from sedentary controls. Gene expression studies have also shown a distinct pattern of response to exercise in ME/CFS patients compared with sedentary controls and patients with other illnesses. Evidence, including imaging, spinal fluid, and immunological testing, has mounted to the point where Dr. Anthony Komaroff declared that the debate over back in 2006.

But the psychosocial school has not relented and I now see a change in their tactics. Instead of insisting that the illness is psychological, they are waving their hands and saying that the psychological v. physical debate is irrelevant. I offer two recent examples:

First, there is the systematic review of ME/CFS case definitions by Brurberg, et al., which I reviewed in detail in my post Systematic Overreaching. The authors stated:

It is likely that all CFS/ME case definitions capture conditions with different or multifactorial pathogenesis and varying prognosis. The futile dichotomy of ‘organic’ versus ‘psychic’ disorder should be abandoned. Most medical disorders have a complex aetiology. Psychological treatments are often helpful also for clear-cut somatic disorders. Unfortunately, patient groups and researchers with vested interests in the belief that ME is a distinct somatic disease seem unwilling to leave the position that ME is an organic disease only. This position has damaged the research and practice for patients suffering from CFS/ME.

As I said in my comment on the article published on BMJ Open, “The authors presented no evidence to support their accusation that the organic disease -only position has damaged research and clinical practice. Furthermore, they completely ignored the very real and logical possibility that the reverse is true. In other words, it is equally possible that the people with vested interests in the belief that ME/CFS has psychosocial causes are unwilling to leave that position, and have damaged the research and practice for patients suffering from the disease.”

Second, the recent report on the case definition for Gulf War Illness included the following discussion of the mental v. physical debate:

Like CMI and many other symptom-based illnesses, ME/CFS is not without controversy, particularly regarding whether they are mental disorders or physical health disorders [cite to IACFS/ME Primer]. The committee notes that this either-or approach is not useful, for several reasons. The distinction between mental and physical disorders is often arbitrary, and most patients’ experiences of any illness are influenced by biologic, psychologic, and social factors. Either-or thinking leads too often to a presumption that medically unexplained symptoms must be psychogenic. In addition, psychiatric [sic] symptoms may not be fully evaluated if a patient’s symptoms are psychogenic. Although physical and psychologic stress can exacerbate many chronic conditions – including chronic pain, headache, respiratory, and gastrointestinal symptoms – there is an inherent risk in assuming that medically unexplained symptoms assume a “stress-induced” etiology.

As in Brurberg, et al., there is no rejection of the psychogenic theory of ME/CFS. Instead, we’re told to abandon the debate. It’s not either-or, it’s both. Let’s stop arguing about the evidence, and go with a holistic view (that still includes the psychogenic theory).

It’s A Trap

Do you see what’s happening here? The ME/CFS psychogenic school is wrong – as shown by all the data that indicates biological abnormalities that are not seen in sedentary controls or people with depression or anxiety. But instead of admitting the error, they are simply changing tactics. Now they are saying that it’s psychological AND physical, and the distinction does not matter anyway.

Contrary to this new angle on psychosocial explanations, I believe it matters a great deal whether ME/CFS (or GWI) is a mental or physical disorder. The distinction between mental and physical is not “arbitrary,” but can be drawn based on signs and symptoms. I readily admit that my emotional state and coping skills have had an impact on my experience of this disease, but I completely reject the premise that therefore the distinction between mental and physical does not matter. It does.

People with mental health issues are primarily treated by psychologists, and in ME/CFS that usually means CBT and GET. We know that GET can have serious and long-lasting negative effects on ME/CFS patients. For decades, ME/CFS patients have endured dismissal and worse because of the psychogenic view of the disease. To say the distinction does not matter is foolish, at best. The practice of medicine is structured around that duology. There are medical diseases treated by physicians, and there are psychological diseases diagnosed with the DSM-IV (soon to be DSM-V) by psychologists. In the middle are psychiatric diseases like schizophrenia which are known to be biological, but are treated in the mental health setting because the symptoms of disease are behavioral. Mental health diagnoses are treated differently by health and disability insurance. There is a difference between the physical and psychological attributions of illness: in health care, in benefits, and in social views.

If the mental-physical duology no longer applies, shouldn’t that be true of all diseases? If “patients’ experiences of any illness are influenced by biologic, psychologic, and social factors,” then I suppose we are abandoning the dichotomy in cancer, heart disease, and multiple sclerosis too? I don’t know about anyone else, but I don’t hear anyone suggesting that those diseases are psychogenic in any way. I have family members who have endured MS, cancer and heart disease. Stress can make those diseases harder to manage, and even exacerbate the underlying disease process. But no one would ever say “let’s abandon the either-or thinking and agree it’s biologic and psychologic.” No way. Those diseases are accepted as physical in origin, with implications for behavior and coping. I believe that I deserve the same respect.

Bias and Decision Making

I’ve described the psychosocial school as changing their tactics, but I don’t necessarily believe there is a smoke-filled room where a cabal of psychologists sat down and said, “We’re losing the argument so let’s use these talking points instead.” I think the shift may be the result of cognitive bias and the difficulty humans have with admitting they’re wrong.

If I am a psychologist and I’ve invested 10 or 15 years in the theory that CFS is the result of poor coping skills and deconditioning, it’s going to be hard to change my mind. Despite mounting evidence that my theory is wrong, it will be hard to let it go. An easier step is to say that I’m not completely right but also not completely wrong. It’s not either/or, it’s both.

ME/CFS patients have gone through this process themselves. When the XMRV paper was published in 2009, many patients seized on the results. We had very good reasons to do so, and at first, the science and scientists seemed to support that position. But as contrary data emerged, and hard questions were asked, some scientists and patients found it very difficult to follow that data. They continued to insist that it was XMRV, and when that was disproved they claimed it was HGRVs. And when that was disproved, they claimed the science hadn’t been done right or there was a conspiracy or there were unidentified retroviruses at work. And it was three years before Dr. Mikovits finally took the courageous step of publicly admitting her conclusions had been wrong.

Nobody likes to admit a mistake, and the more you have invested in that mistake the harder it is to admit it. The psychogenic explanation of ME/CFS is wrong, but instead of admitting the mistake, some scientists are shifting gears and saying that it’s not completely wrong because the physical-psychological divide doesn’t actually matter. They are not following the data, and they are attempting to twist the dialogue so they don’t have to admit they are wrong.

Drawing the Line

The divide matters, and I will not be drawn into a compromise view. ME/CFS is a physical disease with physical causes. My emotions are relevant to my ability to cope with this physical disease, just as emotions are relevant to coping with cancer or AIDS. But I reject any hypothesis that leaves the psychogenic view on the table. Not because I don’t want to face up to having a mental illness. Not because I want my disease to be physical. Not because I am personally prejudiced against mental illness and not because I don’t see the relevance of emotions in physical health. I reject the psychogenic hypothesis because the data is not there.

I had a happy childhood. I had a satisfying career and personal life. I enjoyed being physically active. Then I got sick. And despite my strong desire to continue in that career, that personal life, and that physical activity, I have not been able to do so for almost twenty years.

The reasons why my life was destroyed matter. The cause of that destruction matters. To say that the distinction between physical and psychological causes is arbitrary and irrelevant is to dismiss my experiences. It may save face for the psychogenic school, but it is a slap in mine. I challenge the researchers and decision makers to admit their errors, and get on with the business of finding the answers that will repair my body and my life.

This post was translated into Dutch, with my permission.

 

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33 Responses to Changing Tactics

  1. I agree, Jennie: It’s a ludicrous argument that, once again, seems to apply only to us. The either-or approach being flawed, that is.

    The shift you describe became glaringly obvious in the latest IOM GWI report. “They” are not going to admit they’ve been wrong for decades at the expense of patients without a fight. Cognitive dissonance is extremely powerful.

    • Jennie Spotila says:

      I completely agree, Jeannette. It may be human to cling to cognitive bias, but we cannot fall for it. This compromise middle ground is extremely dangerous for us.

  2. Tom Kindlon says:

    An analogy I have for views of people like Peter White is that ME/CFS is like simple obesity: one may find abnormal physical results (e.g. higher lipids) but the condition is reversible with changing behaviours (in the case of obesity, eating less and/or exercising more; in the case of ME/CFS, gradually doing more).

    So he might say both conditions (obesity, ME/CFS) are both physical and psychological, but really it’s not “physical” like many other medical conditions.

  3. Rebecca says:

    “Now they are saying that it’s psychological AND physical, and the distinction does not matter anyway.”

    Yep. And the new “Somatic Symptom Disorder” category in the DSM 5 will make it easier for us to get slapped with a psychiatric diagnosis.

  4. James David Chapman (@batteredoldbook) says:

    Strongly agree. Confusion, stalling, duplicity, trap. Yes.

    A genuine belief in psychosomatic causation, dual causation, or the idea that the dichotomy itself is irrelevant, would by necessity mean that #MEcfs should be addressed from both mental and physical angles – rather than exclusively from the psychological side.

    To be absolutely certain that this is not a genuine attempt to meet halfway as a “unity of opposites”, I asked some leading UK doctors the simple question:

    “How should research funding be shared between psychological and biochemical research?”

    Funding speaks far louder than words. If psychology truly believed in equality one would expect research funding to be equally shared. Instead, as is so often the case, those asked chose to remain silent on the matter, thus allowing the current UK status quo, (extreme psychological bias in research and treatment) to continue.

    While this does not fully address the problem, I think avoiding spurious and circular argument with simple questions can save us all a whole lot of precious time and energy.

    We get these issues a lot over in UK medicine. We’re just awful. Sorry, world.

  5. Laurel says:

    I agree wholeheartedly. It’s their way of trying to salvage their careers. I’ve often heard it said that change only really happens when the old guard dies off. Let’s hope it doesn’t take that long!

  6. In the US. What’s fascinating about all this is that it is the virology and infectious disease specialists at NIH and CDC who are insisting the disease is primarily psychological – not NIMH (Natl. Institute for Mental Illness). NIMH is not that interested in pop psychology – they are looking for the physical basis of major psychiatric disorders such as bipolar and schizophrenia.

    (And a disease for which the “cures” are a special type of behavioral psychotherapy, CBT, plus gradually increasing exercise, GET, is psychiatric – all evidence to the contrary.)

    They can get away with anything they want. Frightening. Dispiriting.

  7. Ellis says:

    Amen.

  8. Libby says:

    @Mary Schweitzer
    Well said, Mary. The irony of it all. No words for it, just more head on desk banging (not that I have a desk.)

  9. Libby says:

    @Jennie Spotila
    Thanks Jennie. Well said, Tom, Jeannette, Rebecca, and all.

  10. John says:

    Thanks Jennie. You make some very good points. We tend to focus a lot on the financial and career self-interest of government functionaries and certain industries as the primary targets. We forget that individual ego plays a very big part in this. It is something that we should be more specific about in our communication to the various actors and the media. Doctors and academics tend to have some of the biggest egos of any profession on the planet. I bet many people have died or suffered horribly because these people could not bring themselves to consider that they might be wrong and to publicly admit it.

  11. Deborah Waroff says:

    Dialectical materialism is useful for comprehending the real factors that underly the voracious appetites of contemporary psychologists’ and psychiatrists for “functional” and psychogenic interpretations of organic diseases. This goes beyond ME and is gaining force with horrible consequences — e.g, the incarceration of teenager Justine Pelletier for 14 months in Boston Children’s Hospital’s locked psychiatric ward due to alleged “somatic” illness, despite pre-existing diagnosis of mitochondrial ailment by authoritative sources.
    The prime sources of income for psychiatrists have been demolished in recent decades — neither insurance nor government will pay for lengthy “talk therapy,” and few patients can any longer afford more than the dozen at most treatments insurance allows. At the same time people are attracted to the study of psychology, creating vastly more such “professionals” than academic settings can support. There is a glut of psychologists and staff ambitious for ever more income, and not unreasonably. They can see and imitate well-known psychiatrists and colleagues who have made fine fortunes and fame out of labeling the sick and helpless as fantastical and malingering.
    Truly these “professionals” constitute a new Golden Horde, trampling victims underneath as human clans ever have in search of greener pastures and better living.
    The propaganda that their victims’ illnesses are “controversial” is nothing more than magical incantation used to disguise their relentless conquests in a guise of civilized legitamacy.

  12. Erik Johnson says:

    I’ve recommended this before….

    The first thing you need to do is to clean house of “CFS advocates” who are mindbody promoters.

    Allowing them to speak on your behalf is tacit agreement that the concept is permissible.

    That is all the psychs need to keep their foot in the door.

  13. kathy d. says:

    Brilliant exposition of the issues at stake in the physical vs. psychological “causes” of ME/CFS. I plan to print it out and try to remember your points. Very importantly, you point out — and I wish the IOM, HHS, CDC, etc. would strongly consider — the biomarkers that exist for this disease as opposed to healthy controls or people with other illnesses. Look at the tests people! They say volumes about this disease’s physical characteristics.

    This is very serious. It matters and affects disability benefits, — governmental and private — health insurance coverage, Medicare, Medicaid and private companies — and so much more. It affects everything.

    I don’t know if I think it’s all reluctance of doctors to change their minds (or psychologists) or big egos. I think there is more to it. I think the powers-that-be don’t want to expand medical or disability coverage, i.e., expenses, nor do insurers, and there is resistance all the way around to doing so. This is an easy disease for them to push aside and not recognize.

    There was reluctance to fully research the HIV virus and find treatments until gay groups organized strong protests to demand funding, research, treatments — and they got it! It took a movement to get this!

    We’re kind of on the way on this disease, although most of us can’t participate like this or we’d be doing more. But we’re using Social Media and more. Those who can attend federal meetings or send videos or statements are great, are some of the heroes here. It’s going to take more in this period where government funding of many social services have cut back since the Sequester.

    I think posts like this are just terrific, just what’s needed. I wish I could copy and enlarge and paste this entire post on a T-shirt and show up in Congress or at the HHS wearing it, with a big group of like-attired ME/CFS sufferers.

  14. Tanya Marlow says:

    Brilliant blog post, thank you. The propaganda machine of the psychiatrists is frighteningly powerful.

  15. James David Chapman (@batteredoldbook) says:

    White “might say both conditions (obesity, ME/CFS) are both physical and psychological, but really it’s not “physical” like many other medical conditions.”

    I think Tom’s analogy goes a long way to show how the word “Chronic” in Chronic Fatigue Syndrome is used by some physicians to mean “habitual”, a poor personal, behavioural, choice, rather than “ongoing & currently incurable” (the meaning that many patients assume).

    Unfortunately this linguistic flip serves to shift responsibility for treatment from physician to patient, limit research funding allocated by society and create treatment regimes which are the polar opposite of those which ME patients the world over report to be helpful.

  16. Annie says:

    Great post, succinctly put

  17. Robin says:

    Outstanding post, Jennie. The comments are also outstanding The GWI panel fell into the “both” trap and I expect the IOM ME/CFS definition panel to do so as well. There’s no room for saving face in science. I look forward to the day when science wins and the psychs fade into M.E. history.

  18. Justin Reilly says:

    @Erik Johnson
    I couldn’t agree more.

  19. Justin Reilly says:

    @kathy d.
    Kathy, I agree, this is a great post by Jennie, and I also think she is right that personal bias drives much of this, but strongly agree with you that there is certainly more to this; there is definitely conscious “rent seeking” behavior by the Wessley School, CDC and NIH to intentionally warp the science on behalf of health insurers.

  20. Justin Reilly says:

    @Deborah Waroff
    Though I was a psych major, I have to agree with you, psychologists’ and psychiatrists’ hunger for territory comes at a horrific price for those they label as having somatoform disorders.

  21. Justin Reilly says:

    @James David Chapman (@batteredoldbook)
    Yeah, they might as well just come out and call it Habitual Offender Fatigue Syndrome.

  22. Carrie says:

    Brilliant, Jennie! Thank you!! I will not be drawn into a compromise view either. I suppose some people wish we weren’t that intelligent. ;-)

  23. kathy d. says:

    Is there a way we can mass email or set up a petition with some of these points, especially on the science, biomarkers, etc. to the powers that be? Or that several of us could send in emails to many. I know this has been done with other posts and from other blogs, but pressure couldn’t hurt.

    • Jennie Spotila says:

      I think we would need to define the goal and potential targets. Email campaigns have been most effective when they’ve been carefully targeted and designed.

  24. Carollynn says:

    The funny thing with “body-mind” theories of our illness is that it seems the APA wants us to trust their minds about our bodies. I have read the change of tactics in articles lately that use the term “sickness behavior” when they are discussing symptoms. As if they would ever discuss clutching one’s chest in a heart attack or coughing for those with COPD as “sickness behavior”!
    Thank you for harnessing your incredible intellect to tease apart the pernicious language in these documents, Jennie! Susan Sontag wrote a great little book, Illness as Metaphor, that ten years ago gave language to the dis- that I felt from assumptions of others that I had somehow chosen to have ME/CFS, that it was related to some unresolved psychological issue an not a pathogen. Sontag was writing about cancer more specifically, but her observations are true for all chronic illness. She notes a “peculiarly modern predilection for psychological explanations of disease, as of everything else… Psychologizing seems to provide control over the experiences and events (like grave illnesses) over which people have in fact little or no control. Psychological understanding undermines the ‘reality’ of a disease… A ‘physical’ illness becomes in a way less real—but, in compensation, more interesting—so far as it can be considered a ‘mental’ one… Illness is interpreted as, basically, a psychological event, and people are encouraged to believe that they get sick because they (unconsciously) want to, and that they can cure themselves… Psychological theories of illness are a powerful means of placing blame on the ill. Patients who are instructed that they have, unwittingly, caused their disease are also being made to feel that they have deserved it” (54-56).

    • Jennie Spotila says:

      I love Sontag’s book, Carollynn! Thank you for drawing my attention to that quote.

  25. Mary Dimmock says:

    Great article, Jennie. The comments about ME and the mind-body controversy didn’t belong in the GWI report as that panel did not have the expertise or charge to study ME or understand the controversies surrounding ME.

    But the one comment that I would make is that this is not a new tactic. The push to avoid a mind-body dualism and adopt a biopsychosocial approach goes back to at least early 1990s and was accompanied by statements of patients being “anti-psychiatric” or in other ways unreasonable if they didn’t accept that view. This has been a very effective way to push a particular conceptual bias while simultaneously marginalizing objections from patients. It has enabled CFS to be broadened out over the years and redefined as a psychological problem.

    On a related note – I was at the conferences in California this past week and was surprised when Oxford was not mentioned during the reviews of “CFS” definitions. It was like Oxford didnt exist. But Oxford “CFS” studies and associated theories of maladaptive behavior/avoidance of activity is what drives the medical reality/stigma/mistreatment that patients face every day and I was disappointed to not see the problem acknowledged more explicitly.

    I agree with your comment on clarifying the goal and the targets and also think one or a few letters may be just as effective as a targeted email campaign, depending on the goal and who the targets are.

  26. Karin Alison says:

    Interesting that you mention Dr. Komaroff. A relative recently sent me a link to an article in his hometown paper. (http://www.montereyherald.com/health/ci_25393450/ask-dr-k-coping-chronic-fatigue-syndrome) with Dr. Komaroff, discussing CFS.

    While he does talk about physical abnormalities, two of his five suggestions for helping cope with the disease are CBT and GET. He may have intended to imply that getting as much activity in as can be tolerated is healthy and that a therapist can help deal with some of the psychological issues associated with any chronic illness and I believe both of those are true.

    Unfortunately, this is not what he said and they way he suggested these things can be very dangerous to the people he is supposed to be helping with the column – those with little or no knowledge of the disease. As my relative said when he sent the article – at least it might generate more awareness of the problem.

  27. Alan Gurwitt says:

    Thanks once again for your insightful comments, Jennie, that stimulate such equally thoughtful responses. I agree with your analysis but would like to add a couple of comments. There are 2 “APA’S”, one an organization of psychologists and the other of psychiatrists. There is a third important group, that being the American Academy of Child and Adolescent Psychiatry (AACAP) made up of child psychiatrists. The key issue with all three is that there has been a skewed literature biased towards psychogenic causation. For there to be significant change in attitudes there has to be much better education of leaders and members of these organizations preferably coming from the top as well as from key journal editors. As to individual psychiatrists, psychologists, and child psychiatrists as well as social workers and mental health nurses there are many examples I have seen who get to know their patients well and recognize the medical basis of ME/CFS. It is the uneducated leadership that have held sway up to now.

  28. Ess says:

    To Dr. Komaroff’s article in the link above posted by Karin.

    Dr. Komaroff states that CFS (as he refers to it) is ‘relatively uncommon’ affecting 4 – 8 out of every 1,000 adults in the U.S., and a small fraction of teenagers and younger children. These numbers do not make ME/CFS relatively uncommon, but more prevalent. And we know that the numbers of ME/CFS are rising.

    Komaroff says that CBT can reduce symptoms in ME/CFS–this is INaccurate and MISleading–CBT can help with coping strategies in managing and ‘living’ with a never-ending debilitating disease–CBT does not reduce symptoms.

    The psychobabble spin is not a new tactic–the spin on descriptive words mean the same thing–that IS transparent–and this was a GRAVE concern in being corralled into the IoM contract from the get-go. Corralled as in — caged, enclosed, locked into, shut within — secrecy behind closed doors.

  29. Max Banfield says:

    I am the inventor of the modern method of treating CFS which is regarded as the best today, but someone else has given it the label of pacing.
    I invented that method because the old advice to ignore my symptoms and run fast only made it worse.
    It was very obvious to me that the problem was entirely physical, because as soon as I tried to jog or run at faster speeds I would get worse symptoms, and when I slowed down and ran at my own pace I was reasonably able to continue.
    I had enrolled in an exercise group at the South Australian Institute for Fitness Research and Training at the time and had my aerobic capacity tested and it was abnormally low, and although it improved over a period of time it reached a peak which did not improve despite continued training and was obviously due to a measurable and physical impairment.
    A few years later I found that international researchers were not able to get patients to train because they all dropped out of the standard programs, and later I met the head of the research institute.
    When I told him that I trained for ten months he invited me to design a research project for other patients. I was able to scientifically prove it was a physical problem and the success of the training was reported in several Australian and probably overseas newspapers in 1982/3.
    I wrote a research paper and submitted it to two journals but it wasn’t accepted.
    In response to criticism that it wasn’t published in a top quality medical journal I recently submitted some essays, including that research paper, to the British Medical Journal, and it was published on 8th January this year (2014).
    See here http://www.bmj.com/content/347/bmj.f5731/rr/680738
    It is obviously a physical problem, and the only reason for that not being widely accepted is the people who deliberately act like the “merchants of doubt” and continually try to ignore, dismiss, discredit, deny, and hide the evidence to make sure it is not “officially” accepted as proven.

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