Discussion in 'Health News and Research unrelated to ME/CFS' started by Dr Carrot, May 25, 2019.
It's possible he didn't have ALS but another motor neuron disease or perhaps a MND sub-type so rare only he had - that is after all how rare some of these diseases are. Anway, it's weird that he says it's a disease of old people, since there are countless examples of ALS and SMA happening to people in their early 30s or very late 20s. One guy that must've been around that age was on the front page of Reddit in the last few weeks! The core components are objective as well - basic neurology and electroneurological testing.
The pychosomatic cult never dies, it just changes hats and finds a new target, preferably one that cannot hit back. Like dead people.
The paper in question:
(it's 3 pages, a quick read)
It's a refreshingly guileless piece. For a couple of reasons, I found it much more respectable and, in some ways, reasonable than the typical fare from Wesseley, Sharpe, Crawley, etc.
The first reason is the acknowledgement in the title that if a patient is somehow mentally 'creating' their CFS, or pseudo-MND, or transgenderism (yes, this is mentioned), it rises to the level of delusion, well above the 'unhelpful' that CBT would purportedly treat. It makes no sense that someone who has mentally created their long-term bed-bound state, for instance, could just be talked out of some 'unhelpful beliefs' an cajoled into gradually functioning normally.
The second reason is that the author has rather plainly not bothered to check that any of his reasoning makes sense or is coherent in any way:
Conflating CFS or other major impairment that might end up labeled as conversion disorder with nausea caused by anxiety is silly and would contradict the acknowledgment above. The author mentions a few disparate case studies that prove nothing in particular. The best he seems able to offer is that:
- which to my knowledge (someone more knowledgeable can provide more insight) is a leap of faith more than anything.
So his belief in 'conversion disorder' or psychosomatic illness is based transparently on faith backed incoherently by some encountered cases interpreted to fit that faith. In this way it is probably a helpful insight into the mostly unexamined jumble of beliefs and prejudices held by the typical physician - in contrast to the more calculated PACE characters.
Wow, these people are determined to prove they are nutjobs.
I wonder how long it will take the medical community to realize this. At current rates it does not look promising.
Its hard to know what to make of this. Why this? Why now? It seems to be in support of MUPS, or whatever, but why?. If you mention Slater why not mention that the views were immediately forcibly challenged by Walsh, and that the dispute has gone back and forth ever since. It is hardly worth an article in these terms
Elaboration of the views about the atypical presentation of disease together with further consideration of what "disease" "is", might have helped.
I wonder whether anyone has told him about Ron Davies and team. It seems unlikely.
what are the odds that someone THAT exceptionally talented falls ill from a debilitating mystery disease after taking up studies ?
The guy is a sociopath, and a dangerous one at that.
I haven't bothered to read the paper. Just looking at the list of references makes it clear that he's just picking stuff to reference to prop up his prejudices.
It's not a serious scientific review, in fact the only reference from a medical journal included is on 'Hysteria' from a 1965 paper, two are by May himself, and then there is Sullivan's poorly researched book and a couple of Hawking's own books.
Edit: OK, I've read it now.
It's not a scientific review, it's a delve into Steven Hawking's diagnosis based partly on Hawking's own book published after his death in which it seems that he didn't have a clear diagnosis. And on the basis of that to conclude that Hawking's illness was psychosomatic.
He takes O'Sullivan's book, including specifically the chapter on ME/CFS as 'true'. In other words, he's a strong proponent that there are lots of people with psychosomatic illnesses, and that those with ME/CFS are among the most problematic for doctors because we refuse to believe our illness is all in our minds.
I take it you know of this individual?
I found this. It certainly... speaks for itself.
Prof Hawkin may have had a very atypical form of MND (ALS); indeed in MND life expectancy on average from first symptom is arround four years, very different to Prof Hawkin. When I was still working I found the existence of Prof Hawkin was both a blessing and a curse, what people knew of him helped them understand MND a little more and made alternative and augmentative communication systems much more social acceptable, almost cool, but also he gave many a very unreasonable view of their likely life expectancy.
However there are other atypical forms of MND, for example a form with a much more rapid course and associated dementia. It seems very bizarre to decide Prof Hawkin had a psychosomatic condition on the basis of no medical data. It may 'be a logical possibility' but it is 'a most unreasonable fancy' (sorry not good at exact quotes).
I also remain to be convinced that conversion disorders of the form envisaged by May have ever been reliably demonstrated to exist outside the realm of novels and doctors' imaginations.
Even the people with motor neuron disease get questioned by these guys
I repeat what a psychiatrist (well respected!) told me years ago. "I find it hard to accept that serious disease can be caused by psychological processes"
Nausea caused by anxiety or stress is not hysterical or conversion. It is a well understood consequence of the autonomic nervous system which is functioning efficiently when it happens. The system may trigger too quickly or modern life may tax it but this is a bad example to use for MUPS or whatever.
I think there is an interesting aspect of the nature of psychology that psychologists have not cottons on to.
Psychology is entirely an empirical science, in the way that chemistry was before quantum mechanics explained valency. That means that psychology has no means of postulating and testing mechanisms because these are entirely hidden. All it can do is document the normal rules of association of experiences - whether sensations, emotions or whatever.
That may man that hypothesis about the way experiences normally correlate can be tested. However, what biomedical scientists commonly fail to realise is that studying abnormal processs is completely different from studying normal processes. Normal processes follow rules that allow predictions. Abnormal, or disease, processes, by definition break these rules - so you cannot make any predictions from the rules. And in a field where you have no access to mechanism you cannot predict any other way. So it is self-contradictory to suggest that predictions can be made about abnormal psychological processes.
The only reason we can understand rheumatoid arthritis is that we not only know about correlations in the immune system but we understand the mechanisms of cellular interaction. So we can derive mechanistic hypotheses derived from the way we know the system normally functions. We know that complement normally clears immune complexes. So we can understand why people with lupus, with complement deficiency, have trouble with immune complexes. Psychologists have no access to this sort of information because nobody knows anything about how brain cell connections generate thoughts and behaviour above peripheral reflex level.
The PACE lot are indirectly questioning the validity of many "respectable" diagnoses by embracing LP. I don't think there are firm limits that they wouldn't cross to promote their belief system. The evidence base is so vague and tenuous that they latch onto anything, consequences be damned.
I doubt even the idea of cancer personality has been thoroughly abandoned, it's just kept quiet, as the author of this nonsense (the paper, not the article reviewing it) at least admits about Hawking's MND. If some study eventually found something to revive this old tripe you bet they would at least discreetly promote it, if only out of hope that it reinforces their own work. Reality doesn't factor in this ideology, only what they imagine to be true.
Is the psychosomatic label the real old whine in a new bottle?
It would only have usefulness if done by a professional in a systematic process but from bits and pieces I have read of historical articles in psychosomatic medicine, you could put side-by-side the stuff that was written 80 years ago about things like peptic ulcers and other misdiagnosed cases with the current stuff written about ME and MUS and it's basically identical.
It's all based on fictitious loopy cycles of thoughts and beliefs, cherry-picking correlation and slapping a causation label on it, reversing causality and a hefty dose of the god of the gaps. It's 100% rhetorical, no actual objective evidence to be found.
Style varies, the terms are not the same but the substance is exactly the same. The field has been completely stuck right out of the gate on Freud's couch and has not progressed one bit, literally pretends its past mistakes don't exist and has no interest in learning from them, with complete disregard for the disastrous consequences for millions.
For reference, one comment by Wessely that pissed me off enough that he blocked me was commenting that one of the most important things they have shown in 30 years of "research" on ME is that mood does not correlate to fatigue, which is a question no reasonable person would have asked or should have ever cared about as it betrays complete ignorance about the disease.
That's 3 decades of "progress". Millions of lives ruined and maligned, who-knows-how-many deaths, millions in funding wasted while legitimate research is still being blocked. That counts as progress in the mind of someone who dedicated his career to this. Running around in circles and marveling at how high the pedometer count is. Ridiculous.
It's an ideology. Reality does not factor. Never has, never will.
I guess it is a problem for witch doctors, when their patients refuse to believe what they are told to believe.
Before I forget; some relatively newly diagnosed people might wonder about the reference to "old whine in a new bottle".
It is hard to believe that Simon Wessely has not been quietly laughing these last thirty years. In 1989 he wrote a paper entitled "Old wine in new bottles; neurasthenia and 'ME' ". If he could not hear the homophone in the title he really should be more careful, but he has a good ear for words. The suggestion seems to be that neurasthenia is an old whine, bottled in the new "ME". It was probably an "in" joke, and probably seemed like a good idea, at the time. Of course, the notion might never have occurred to him. In which case I take back what I said about him having a good ear for words.
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