Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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New paper on ME in Psycho Research by Esther Crawley Jan 2018

Discussion in 'Latest ME/CFS Research' started by Murph, Dec 28, 2017.

  1. Murph

    Murph :)

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    Last edited: Dec 31, 2017
  2. alex3619

    alex3619 Senior Member

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    Sicker people are harder to treat using psychobabble? No way, tell me it aint so.
     
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  3. arboretum

    arboretum

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    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.
     
    Last edited: Dec 31, 2017
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  4. arboretum

    arboretum

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    This is a fairly benign study that I'm not sure has even been replicated. It isn't clear at all how to interpret the study. The authors would support GET/CBT, but whether that means that they have the aim of showing that ME is psychosocial in every paper that they write (or that they all think ME is more psychosocial other physical conditions), or that they think GET/CBT are very effective or just slightly helpful, isn't clear.

    Also Crawley is the last author on this paper, so she probably didn't have much to do with it.
     
  5. ebethc

    ebethc Senior Member

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    these are the people who entered "complexity" as a keyword... lol... what a brain trust... as if anyone's going to query "complexity" and hope to get meaningful search results (or any UI enhancement for better discovery - eg a tag cloud - is going to pick up that term and produce a more accurate result.....)
     
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  6. ebethc

    ebethc Senior Member

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    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
     
  7. arboretum

    arboretum

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    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.
     
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  8. anni66

    anni66 mum to ME daughter

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    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
     
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  9. arboretum

    arboretum

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    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.

    So I think even in the case that is their intent in this study, the broader scientific community would be skeptical, and they'd have to be backed up by research done by other people and substantially more of other kinds of evidence.
     
  10. ebethc

    ebethc Senior Member

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    interesting... if it's an effort for psych's to connect w the medical community better, then that's a good objective - even if this particular entry is a miss IMO...

    this is an excellent letter from the former director of the NIMH (Dr Insell), written after the debacle of the DSM 5, which was delivered WAY late by the APA and was a big mess... good to know there are ppl in the psych community as frustrated as they should be w ppl like crawley
    nimh.nih.gov/about/director/2013/transforming-diagnosis.shtml
     
    Last edited: Jan 4, 2018
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  11. Moof

    Moof

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    I've been wondering for some time whether Wessely, Crawley et al are paving their exit route for when the (inevitable) diagnostic test for systemic disease is finally confirmed. The fact that it will be a complicated picture will help their position no end. I actually smile every time I think of this crew; they've just never grasped that most of us wish hard every single sodding day that our disease was simply due to a belief that we're ill! You wouldn't be able to get an appointment with a psychologist for love nor money, and we'd all be back at work within a fortnight... :rofl:
     
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  12. Deepwater

    Deepwater Senior Member

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    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.
     
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  13. arboretum

    arboretum

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    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.

    I think that Wessely, who is very irrelevant here, (I'm pretty sure he's a lot more irrelevant than everyone assumes he is) thinks that CFS is some psychosocial thing with some small biological element.

    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. Because whilst the evidence on GET is unclear, the evidence that CFS is biological is totally clear. (Most researchers would also think the efficacy of GET is at least very limited, even though a few like to think otherwise.)

    So I don't think this study is particularly worth reading into until it's replicated, and the scientific community comes to interpret the finding in a certain way. To me, this study doesn't read as an effort to portray CFS as psychosocial, it's just a report of a somewhat interesting finding. If the authors did intend this as a way to portray CFS as psychosocial, that interpretation wouldn't be taken up by the wider scientific community as it's a sketchy interpretation that lacks sufficient evidence, especially in the case of CFS where no one really knows much about how it works.
     
    Last edited: Jan 1, 2018
  14. Deepwater

    Deepwater Senior Member

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    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.
     
  15. arboretum

    arboretum

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    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.

    Also, that quote from Hans Knoop's website doesn't mean much. All he's saying there is that if symptoms can't be explained by another illness, they go in the CFS category, which doesn't say much about whether he thinks it is psychosomatic.

    As for Wessely, his opinions are against the current scientific consensus, so he can't be that influential. He probably just gets off on the media and public attention.
     
  16. ebethc

    ebethc Senior Member

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    ugh.. no... when a somatic explanation is lacking, it means the science is not there yet.
     
  17. Deepwater

    Deepwater Senior Member

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    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.
     
  18. ebethc

    ebethc Senior Member

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    @Deepwater

    the irony, of course, is that it's enough to make you depressed!

    I've been sick a long time, too, and have had similar experiences... If anything, I've been delusionally optimistic... I've always truly believed that a cure or a fix or a hack would come so that I could live a normal or somewhat normal life...Now, at middle age, I've struggled w feeling defeated and hopeless for the first time... I'm never going to have a good life..
     
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  19. arboretum

    arboretum

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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.

    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.
     
    Last edited: Jan 5, 2018
  20. Deepwater

    Deepwater Senior Member

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    I obviously don't know whether you live in the UK, but from what you write I suspect not, and I suspect the UK doctors/ researchers you have met have been a self-selecting group since almost none of the research money over the last few decades has been spent on biomedical research. Those of us who do live here are writing from the inside, and I am telling you about the totality of my experience, not 35% of it. I have visited just two specialist fatigue clinics (it is what they are called), one in the SE and one in the NW, and the doctors in charge of both were hostile and disparaging. I have moved area, and I have changed practice locally, but its is never any better. Please do not sweep aside our experience and knowledge of local conditions - we suffer enough gaslighting already.

    The BPS model is written into Establishment policy regarding the illness, a fact of which you may not be aware. A government study into ME was commissioned in the early 1990s to which only BPS psychs were appointed. It concluded the illness was not physical and should be renamed CFS. Then, when NICE was set up to regulate the NHS, the government of the day appointed only BPS psychiatrists and psychologists to the CFS panel; they still retain the casting vote (Esther Crawley is one of them, and perhaps the most influential). Consequently the NICE guidelines for treatment of CFS/ME are based on a wrong understanding of the illness and are not fit for purpose. For instance, they still discourage doctors from authorising tilt table test and outright forbid the use of antiviral drugs. The patient community had to fight last year in order to force a review of the guidelines, and given the make-up of the panel we still have little confidence that the review will achieve very much.
    As a result of these policy decisions, it became impossible to get help or referral from any doctor. For many years it was also impossible for pwME to obtain disability benefits, until a patient finally managed to establish the legal principle that the UK medical profession had to adhere to WHO guidelines on the classification of ME as a neurological disease. Since then there has been fudge. Government spokespersons will pay lip service to accepting ME as neurological but it is business as usual. It seems to me the psych lobby has got round the issue by intimating that our neurology has been screwed up by our illness thinking. ME is not taught in medical schools, and the UK press over the years has often been littered with stories of criminally insane ME activists threatening the lives of honest researchers.

    So most doctors are hostile to ME patients, or at least those who have been ill for any length of time, and even those who are more enlightened are afraid to offer us treatment. Even my diagnosis of hypermobility took 20 years and I had to pay to see the specialist privately as my GP would not refer me.

    With respect, history in this country has proved that it is counterproductive to ignore the political grip exercised by the BPS school, or to treat them as well meaning but wrongheaded individuals who can be persuaded by the emerging science.
     
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