Murph
:)
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Propose a merge with this thread: http://forums.phoenixrising.me/inde...two-clinical-cohorts-of-adult-patients.56844/
@Sushi cheers
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This is ridiculous. What is the point here?
The patients are ill. These illnesses have a variety of triggers and underlying drivers. This does nothing to understand why each patient is ill or provide any insight to fix them.
You could take a group of patients with headache, swollen lymph nodes, and elevated temperature. Does this tell you what's actually the matter or how to treat it or how well equipped the patient is to fight the illness?
Could be meningitis, could be the flu or the common cold, could be food poisoning...
Whether that's the right way to interpret this study is totally unclear. Saying that the patients with fewer symptoms either don't have ME, or are particularly less severe isn't a claim that's really justified here. The study also didn't say that the treatment wasn't effective, just that it was substantially less likely to be effective.
Based just on the abstract, the kinds of treatments those specialist centres applied isn't clear. It was probably the fairly standard GET/CBT with pacing, activity management, and crash avoidance.
Also, Crawley was the last author on this paper, so she probably played a limited role in the study. In order to properly understand what the implications of this paper are you'd have to look at the full paper and examine it's methodology, context and statistics.
I think this paper is good in the regard that it uses Latent Class Analysis to try to cluster symptoms and then study the differences in the clusters. We don't know whether ME is a single condition, a few related conditions, or totally separate conditions, so trying to study ME by clusters of patients is probably a step forward in terms of methodology.
I mean I had a look at some articles in the journal, and there are articles about ischemic heart disease, psoriasis, diabetes, stroke, parkinson's disease, multiple sclerosis and asthma, so I don't think the choice of journal means too much. In fact, most of the articles in the journal seem to relate to purely physical conditions.fair points to those not familiar w her work and all the other research going on.... however, we do know crawley's work, and this study is consistent w one of the core problems... ie, self reported symptoms in place of any objective lab measures... plus, this research is coming on the heels of important breakthroughs that promise lab measures are on the horizon, which only highlights this dinosaur's waste of resources in a grossly underfunded illness.
symptom-based diagnosis, once common in other areas of medicine besides psychology, has been largely replaced over the past half century because we now know that symptoms alone rarely indicate the best choice of treatment. (a fever can indicate the flu vs sepsis vs a whole host of other illnesses, w varying causes & treatments, etc.)
btw - this was published in the Journal of Psychosomatic Research for crying out loud. Enough already.
http://www.jpsychores.com/article/S0022-3999(17)30841-3/fulltext
Maybe, but that'd be a pretty sketchy way to interpret it, and I think most CFS researchers would pause before interpreting it that way. Also one study doesn't really mean much, you need more done by other people that show the same outcome, and there'd need to be more investigation into why exactly there is the outcome, too. And we probably don't know enough about CFS to come to a clear conclusion on that.Does this not feed the narrative of BPS as espoused by Wesley, Sharpe et al - the greater the nu.ber of symptoms the greater the patient' s belief that it is a physical condition and the less likely the " treatment" will be effective
I mean I had a look at some articles in the journal, and there are articles about ischemic heart disease, psoriasis, diabetes, stroke, parkinson's disease, multiple sclerosis and asthma, so I don't think the choice of journal means too much. In fact, most of the articles in the journal seem to relate to purely physical conditions.
I mean I think they rotate their names mostly just because different people did most of the work in the study, so different people get first and second author.Interpretation would largely depend on what they mean by treatment. All the authors are cut from the same cloth so there is no reason to suppose that any therapies were being tested here other than GET and CBT.
Knoop I believe runs a BPS type CFS clinic in the Netherlands similar to Crawley's. I've just googled SM Collin and I see he is based in Bristol, was a co-author of Crawley's paper on the Lightning Process as a treatment for ME, and also co-authored many other papers with her on CFS/ME. S Nikolaus has written positively on CBT as a treatment for CFS/ME.
The Wessely school always make a point of rotating their names on papers so that when cited in the 'first name et al.' fashion it is not immediately obvious that the output is all coming from the same place.
None of these people accept that CFS/ME is a real illness, so the only possible explanations they can come up with for the lack of improvement in those with more symptoms are that those with more symptoms do not have CFS but something else entirely (possibly biological - it could enable them to salvage a patient group from the way the real science is going), or that the self-reporting of multiple symptoms is a sign of a more entrenched false illness belief. When children fail to get better under Crawley's treatment she often rediagnoses them with pervasive refusal syndrome or whatever she's calling it these days, and has them sectioned.
I mean I think they rotate their names mostly just because
But unless you've got good reason to believe so, I don't know about the others. Just because they support GET/CBT doesn't mean that they don't think CFS is a real disease or that it's psychosocial. If you looked at the researchers associated with universities who think GET/CBT are effective, a large majority of them would think CFS is biological and most of them wouldn't think it's psychosocial.
I think that many people with CFS assume much more of the medical establishment think CFS is psychiatric than actually do. Most have got in the habit of thinking that if someone supports GET/CBT, they must think CFS is psychiatric, which in most cases is untrue.Are we living in the same country, I wonder? The vast majority of the medical profession in England and Wales regard ME/CFS in the same way as Wessely, and the Netherlands comes a very close second for BPS (really psychiatric) modelling of the illness. They have tried, as far as possible to ignore biomedical research, particularly if it was conducted abroad, and the NICE guidelines still offer succour to this pernicious f the disease.
Esther Crawley, like Wessely, likes to fudge, but I have very recently heard (or read?) her repeat the old Wessely school position that the illness begins with a virus, which resolves, leaving behind fatigue perpetuated by deconditioning and fear of activity.
This is Hans Knoop's current statement on the website for the psychology centre he works for (where he is "Head of the Expert Centre for Chronic Fatigue:
"Chronic fatigue can be the result of a chronic illness, but when a somatic explanation is lacking, we sometimes speak of chronic fatigue syndrome (CFS)."
Speaks for itself, really, doesn't it? He has also co-authored papers on the effectiveness of CBT with Peter White, lead investigator on the PACE trial and one of the most notorious of the British BPS CFS "researchers".
I completely disagree about Wessely's irrelevance - he is totally tied in as advisor to successive UK governments and all his gongs aren't given him for nothing.
But I agree, this particular paper seems rather pointless: people with more symptoms are more likely to be genuinely ill and therefore less likely to feel better after an exercise programme and a couple of lectures about stopping their illness thinking. But the authors must have had a purpose in writing it, and it's most obvious use to the BPS school who wrote it is as an evidence base for hanging on to less severely affected patients once the NHS finally squares up to the biological nature of the illness.
This is Hans Knoop's current statement on the website for the psychology centre he works for (where he is "Head of the Expert Centre for Chronic Fatigue:
"Chronic fatigue can be the result of a chronic illness, but when a somatic explanation is lacking, we sometimes speak of chronic fatigue syndrome (CFS)."
Speaks for itself, really, doesn't it? He has also co-authored papers on the effectiveness of CBT with Peter White, lead investigator on the PACE trial and one of the most notorious of the British BPS CFS "researchers".
I think that many people with CFS assume much more of the medical establishment think CFS is psychiatric than actually do. Most have got in the habit of thinking that if someone supports GET/CBT, they must think CFS is psychiatric, which in most cases is untrue.
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In terms of whether most doctors generally enjoy seeing ME patients somewhat less than other patients, whether they are more likely to think there is a psychological component to ME than other conditions, whether they show much less empathy to ME patients, and whether they take ME less seriously than equally disabling conditions, those are all without doubt the case.Sorry, this is just not so, and I say this based on over 20 years of being an ME patient in different areas of England. I have been asked by the "specialist" (actually an endocrinologist) at an ME clinic why I have failed to get better when everybody else does - perhaps I don't want to get better? Then he hands me a box of tissues with a sorrowful look on his face as if trying to provoke me to tears so he could say 'There, there, dear, I know how depressed you are.' He wanted to prescribe relaxation classes - I told him I'd been practising yoga for 40 years, to which he replies 'well, perhaps you're not as good at it as you think you are.' Then there was nice lady doctor who pretended to validate my illness only in order to soften me up for a Prozac prescription. And the not so nice one who ordered me out of the surgery for wasting her time because I asked to be referred for physio for my neck pain - 'physiotherapy is for sick people' being her parting comment. An the anaesthetist before a major op two years ago who, in a friendly voice, reassured me that, so far as he was concerned, there was nothing physically wrong with me. And then there have been the many who just scowl at me with a look of what I can only describe as hatred in their eyes when I try in vain to discuss my symptoms and ask for help, or the doctor who forced me to climb the stairs to see her even though I had arranged for a downstairs appointment. . . . I could go on.
I have spoken to people who have worked in the NHS who have told me honestly what the attitude amongst medical staff towards the illness actually is.
I don't know if you're aware, but the CBT being offered to ME patients in the UK isn't ordinary CBT aimed at helping the patient come to terms with their illness - it is aimed to convince the patient that their symptoms are not real and must be ignored.
No doctor who understood what is known of the biology of ME could possibly prescribe GET as a treatment.
In terms of whether most doctors generally enjoy seeing ME patients somewhat less than other patients, whether they are more likely to think there is a psychological component to ME than other conditions, whether they show much less empathy to ME patients, and whether they take ME less seriously than equally disabling conditions, those are all without doubt the case.
But, on the actual fact of whether doctors who specialise in treating ME or who research ME think ME is biological, a very large majority of them, globally, would think so (even if you just look at the ones that support GET/CBT). That's the strong impression I've got from some in depth discussions with ME doctors and researchers. Organisations like the IOM and WHO wouldn't take the position that ME is biological without that being the case.
In the UK, and probably in the Netherlands, there would be more that specialise in it that think it is psychosocial, but I've still got the impression that somewhat over half (even for the ones that believe in GET) would still think it is biological. Having 35% of doctors think ME is psychosocial is enough for plenty of bad stories. And that's not to say that the ones that think it's biological are any good either.
I think it's counterproductive to treat those that believe ME is psychosocial as a majority group, when the fact of the matter is that they are really a minority group (a few of whom seem to have a thing for public attention), and they should be treated as such.