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Psychobabble, ME and CFS: some musings on a cool morning.

Blog entry posted by alex3619, Jul 5, 2011.

I was thinking about the mind-body problem, and then came across this piece on thinking yourself ill:

http://thekafkapandemic.blogspot.com/2011/07/modest-and-possibly-lucrative-proposal.html

Rather than follow along the same line of argument, I want to discuss something more esoteric. Sometimes I write these blogs and posts as the muse takes me - its easier for me to just go with the flow. Lets recap some mind-body claims made by biopsychosocial adherents:


The CBT Conundrum:

1. The mind and the body are two parts of a whole.

2. Therefore physical ailments can be caused by the mind.

3. ME and CFS have no proven physical cause, only some inept theories, therefore they are psychological in origin.

4. Since they are psychological in origin, psychological therapies are the only way to proceed. It is true that this is often combined with a physical therapy, GET, but I will discuss that later.

5. Psychological therapies commonly improve a minority of patients to a small degree (e.g. the results of the PACE trial).


These claims don't make much sense to me as a whole, so we should check the reasoning. Let me turn this around:

1. The mind and the body are two parts of a whole. Check, we agree there.

2. Therefore mental ailments can be caused by the body. This is a no-brainer, it can't be disputed.

3. ME and CFS have no proven psychological cause, only some inept theories, therefore they are physical in origin. If the previous reasoning is good enough for the biopsychosocial adherents, then the same reasoned argument is valid here. Of course to anybody willing to be rational there are other possibilities such as there may be many different causes, but somehow after some people get you to agree that it could be mental, further discussion ignores physical causation. So the argument from some biopsychosocial adherents seems to be there are several possibilities, one of them they agree with, therefore it is right and the others are wrong. They also conveniently ignore the thousands of known physiological abnormalities found in ME and CFS patients.

4. Since they are physical in origin, physical therapies are the only way to proceed. Hmmm, even I wouldn't go that far, it is quite clear that some of us need psychological help sometimes, but what we don't want is an assertion that psychotherapy is all we need. Yet the claim that physical therapy is useless and a waste of time is frequently made - once a diagnosis of CFS is made in the UK for example, it can be very difficult to get further testing done. Even in Australia many doctors refuse to authorize further testing, and I think this is likely in most countries from the anecdotal reports I read.

5. Physical therapies commonly improve a minority of patients to some degree. However, some physical therapies, targeted to specific problems found by ME/CFS pathology testing, achieve major improvements in the majority of cases. One example is the use of antivirals to treat herpes and other viruses, such as:

http://www.treatmentcenterforcfs.com/

So the upshot of finding physical issues, and treating them with drugs, is an improvement that looks to be nearly an order of magnitude better than the CBT/GET treatments. Yet the adherents of bioscientific treatments do not typically make hyperbolic claims of cures, theirs being the only treatment, and so on. So who should I believe, even without looking at my own case history?


The mind-body conundrum is a complex issue. To me, the mind arises out of the body. Therefore to me, mental causes are actually physical causes, and neuroscience is slowly unravelling the mystery of the brain.

I have seen a naked brain, I have never seen a naked mind. How do you extract the mind from the body? Extracting a brain is routinely done in anatomy schools and during autopsies. When has a naked mind ever been extracted? Can you show me a picture? I have no doubt that psychological trauma can cause disease, but this is because it physiologically alters the body, especially the brain. The trauma is itself physical.

Ultimately old-school psychiatry is studying something that does not really exist, and trying to treat this invented entity with words and simple training. If they resort to drugs, they immediately buy into the concept that the problem is physical. I do think that neuro-psychiatry will get somewhere eventually, it is grounded in the biology with a consideration of how we mentally and emotionally deal with things.

The mind is an invented entity, like the economy or Gaia (another name for the global biosphere). It is a convenience we use to simplify the world - it is hard to talk about thoughts without invoking a concept of mind, otherewise where do the thoughts exist? My answer is they exist in the brain, but "mind" is an abstraction we use to make discussion easier.


The GET conundrum:

1. ME and CFS are essentially mental, leading to physical deconditioning and a belief that physical capacity is diminished.

2. While CBT deals with the mental, GET deals with the physical side. It might reverse deconditioning, but more importantly it provides evidence that there is nothing physically wrong. There is no acceptance of a physical cause here, the deconditioning only reinforces the mistaken believe that there is something physically wrong, nothing more, and the exercise reverses that deconditioning, therefore proving to the mind that there is nothing wrong.

3. Some patients improve with GET, but the failure of GET to cure everyone just means that the underlying problem is really mental: see the first conundrum.


Hmmm, maybe you can guess by now that I am not buying this nonsense? I have already dismissed the mental claim as untenable as a universal explanation.

1. ME and CFS are essentially physical, leading to exertion induced relapse and a belief that physical capacity is diminished. Well, another no-brainer - a decline in physical capacity, routinely demonstrated at Pacific Labs, does indeed lead to a belief that physical capacity is diminished. Who would have guessed? The entire claim to deconditioning has been disproved again and again, which means that the only reason for GET is to teach the mind. See the first conundrum.

2. Pacing deals with the exertional issues by reducing the impact of exertional relapse, and allowing us to cope with deconditiong by being as active as we can handle. Please note I am not talking about "adaptive pacing" as used in the PACE trials, that is much closer to GET than pacing. Under this view deconditioning is also not a cause of ME or CFS. There are now many exercise physiology studies that support the view that deconditioning is not a major component of ME or CFS.

3. The high prevalence of adverse outcomes experienced by patients shows that GET is severely detrimental to many patients. I would argue that the failure of GET to routinely cure patients means that the problem is not deconditioning, their model is wrong. The problem is really physical, and not grounded in deconditioning as a primary issue.

Has anyone done a proper study on adverse events? The PACE trials largely ignore it in a way reminescent of the Black Knight who has his arms and legs cut off but still insists they are flesh wounds - it didn't kill him did it? The cut-off criteria for adverse outcomes are so high that it is ridiculous. If drug trials were conducted the same way, almost no drugs would ever fail. We really need a long-term well-funded follow-up of patients who were made worse by GET, those who dropped out of the therapy and those who were claimed to improve. This needs to be independent by properly qualified researchers, including statisticians.

I have a lot of distrust for this branch of medicine as applied to ME and CFS. I cannot say much about other diseases as I do not know enough about them, but if the evidence I see for ME and CFS with biopsychosocial approach is anything to go by, it is possible that the entire "science" is dubious or fatally flawed. With ME and CFS the biopsychosocial adherents frequently use flawed reasoning; pursuasive rhetoric that is not grounded in logic; switch between definitions of things at will, using whatever definition fits their argument or study, then switch back to the other meaning if convenient - and make hyperbolic statements that are not supported by their own evidence. I expect this kind of behaviour from salespersons on commission, not from doctors or "scientists".

I am tempted to make duck jokes, but they would all have the same punch line.

Just so there is no doubt, I am not against the rational use of therapies like CBT or GET - they have their place. I have done CT, BT and GET, the traditional kind not the modern variants. Traditional CT was helpful to cope with stress, BT failed to correct my sleep disorders, and GET achieved no useful results and may have contributed to my decline. Most ME and CFS patients will try anything, the reason we reject CBT and GET in the modern form is they clearly don't work for most of us, which the PACE results confirm.

Bye
Alex Young
alex3619

About the Author

I am a long term ME patient with many complications. While I have pushed research advocacy since 1993, I became political around 2009. My current project is a book called "Embracing Uncertainty". Uncertainty in medical science seems anathema to too many doctors. "I do not know" is something more doctors should be honest about.
  1. alex3619
    Hi Purple, I have not investigated the exercise physiology side of the research much lately. There are indeed ways to measure deconditioning, and I am fairly sure that they do not explain much to do with ME. The new research at Pacific Labs and by the Lights, and perhaps Klimas, are showing a very different picture - abnormal physiology or cytokines after exercise. Bye, Alex
  2. Purple
    Thank you Alex and Moblet for expressing this so well. Very interesting.

    I have a question: has anyone ever objectively defined what 'deconditioning' exactly means? And if they say deconditioning affects 'physiological processes' then surely these are objectively quantifiable and measurable?
  3. Marg
    A lot to think about...maybe witchcraft would help! Great posts guys!
  4. moblet
    Nicely articulated Alex. One of the curiousities of the medical profession is that if you present with both psychological anxiety and an obvious physical problem, they will assure you that your psychological anxiety is due to your physical troubles. If, on the other hand, you present with the former and they can't see any latter, the reverse must be true.

    As someone with a basic education in both science and its history and philosophy, I would say that the science is flawed, although the flaws are all explicably human, and science is conducted by humans after all. More critically, though, is the unscientific and selective manner in which the medical profession either applies or ignores the science. E.g.:
    Problem: Phenomena are observed that are not explained by your existing model.
    Analysis: The model is assumed to be complete and perfect. Therefore the phenomena cannot be real.
    Solution: Refuse to acknowledge evidence that conflicts with your model.

    Or:
    A treatment produces an observable adverse reaction in 1% of patients. 1% is not a statistically significant failure rate, therefore the treatment is scientifically proven to be safe and effective. Moreover, every patient who presents to a doctor is assumed to be one of the 99%. GET falls into this category - after all, exercise improves everyone else.

    Or:
    Take a large group of patients who may or may not have different underlying problems but have a similar set of symptoms, and place them in a single bucket bearing a single label, say CFS. Let's say 20% of them have a common underlying problem, and someone has a cure. As this treatment cures only 20% of people diagnosed with the condition, it is scientifically proven to be ineffective. One of the interesting outcomes here is that one treatment always guaranteed to be proven effective is to medicate the patient into oblivion such that they are no longer aware of their symptoms.

    Or:
    Doctors find that 20% of patients with a given medical condition are cured by a particular treatment (e.g. botox eases migraines in a percentage of cases). This is not regarded as evidence that the definition of the medical condition might be inadequate.