1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

Simon Wessely wins prize for "Standing Up For Science."

Discussion in 'General ME/CFS News' started by urbantravels, Nov 6, 2012.

  1. alex3619

    alex3619 Senior Member

    Messages:
    7,689
    Likes:
    12,535
    Logan, Queensland, Australia
    Agreed Firestormm. Secondary sources are indicators of something to go look for. Like abstracts and reviews they are no substitute for the real thing. In posting on a forum website however who has the time to check everything? For something more serious, like a submission or paper or published article, then its mandatory. This is one of the reasons why I have a projected ten years to finish my book - I have to check and recheck everything, I can't make presumptions. Indeed, I will probably have to leave a lot of interesting stuff out because I can't confirm it. Bye, Alex
     
  2. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Morning Alex,

    The trouble here is that people re-tweet/re-post with a comment like 'This is soooo cool' 'Hooper rocks!' 'Take that Wessely!' (I exaggerate obviously ;) ) onto main-line public spaces like newspaper columns and areas that are viewed by folk who WILL gain an impression that 'we' are all 'NUTS!' because 'we' are supporting erroneous statements and interpretations. Unless of course this is all very deliberate and the publisher of such statements hopes that nobody will notice? Mmmm....


    Well I wish you well with a project such as this - hope it doesn't prove 'out of date' (or maybe I hope it does?) :)
     
  3. alex3619

    alex3619 Senior Member

    Messages:
    7,689
    Likes:
    12,535
    Logan, Queensland, Australia
    I would love my book to be obsolete before I finish it! That means we would all be doing so much better or looking at serious progress! That is the main goal of my spending years investigating and writing after all.
     
    jace and Enid like this.
  4. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    UK
    But in the meantime please keep going alex !
     
  5. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    To be clear, for those who may not have followed the entire thread, at no point have I supported the submission of FOIs in respect of this issue.
     
  6. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK

    I stand by my view that calling on patients to attempt to involve their MPs in this issue is misguided.

    I stand by my views regarding the Written Question tabled by the Countess of Mar.

    Suzy Chapman
    Dx Revision Watch
     
    barbc56 likes this.
  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK

    Kevin Short has been named specifically since Kevin had made a public call for MPs to be written to in a document circulated on November 8 - a correction and follow up to his original commentary, dated November 7, that has already been posted on this forum and in which he had asked "Is it not time that questions were asked in parliament and elsewhere demanding conclusive proof of these alleged threats against him?"

    Since Kevin marked both posts with permission to repost and since he is the author of a call for MPs to be contacted and for questions to be raised in Parliament, I cannot see how he or anyone else should object to his being specifically referred to as the author of such calls.

    Circlated November 8:

    CORRECTION AND POSSIBLE PARLIAMENTARY QUESTION RE MY POSTING OF 7 NOVEMBER 2012.

    To whom it may concern,

    Please note:

    1. I have made some minor corrections to the posting I made yesterday regarding alleged threats from the ME Community against Professor Simon Wessely and his award of the 2012 John Maddox prize. The updated version of my text is given below and is now available as a pdf at the following link:
    http://www.angliameaction.org.uk/docs/wessely-threat-proof.pdf

    2. I have been approached by a member of the UK parliament regarding use of my posting as a basis for tabling a parliamentary question. I would encourage as many UK residents as possible to write to their member of parliament (at: The House of Commons, Westminster, London, SW1A 0AA) regarding matters raised below. At the very least, if Professor Wessely has reported ME patients to the Police there should be a dated record of police incident numbers. Whatever the extent of such evidence, I am quite sure that it will still only represent a tiny misguided minority and should NOT be erroneously used to blacken the good name of either all ME patients or helpful professionals using legitimate channels to subject Wessely-School 'CFS/ME' science to appropriate scrutiny.

    Anglia ME Action [UK], 7 November 2012.
    http://www.angliameaction.org.uk/docs/wessely-threat-proof.pdf
    contact@angliameaction.org.uk


    PLEASE CAN WE SEE THE OBJECTIVE EVIDENCE OF WIDESPREAD M.E. PATIENT "THREATS" AGAINST PROFESSOR SIMON WESSELY?

    To whom it may concern,

    Re the recent award of the John Maddox Prize to Professor Simon Wessely for 'standing up for science': "Simon Wessely, Professor of Psychological Medicine at Kings College London, is awarded the Prize for his ambition and courage in the field of ME (chronic fatigue syndrome) and Gulf War syndrome, and the way he has dealt bravely with intimidation and harassment when speaking about his work and that of colleagues."[1]

    Professor Wessely, and sections of the media, have previously claimed that he has been the object of death threats[2]. The widespread press coverage of which in 2011 just happened to coincide with the publication of an International Expert Consensus Panel document[3]. That ME International Consensus Criteria (ME-ICC) document eruditely refuted much of what Professor Wessely has claimed with regard to both the nature of and the World Health Organization (WHO) classification of the serious neurological disease that is Myalgic Encephalomyelitis (ME).

    One of the authors of the ME-ICC document, Dr Terry Mitchell, was until recently one of the most experienced consultant NHS ME specialists in the UK - having cared for over ten thousand ME patients over many years. He had previously expressed grave concerns about Professor Wessely's favoured CBT/GET 'treatments', the unrepresentative nature of the National Institute for Health and Clinical Excellence (NICE) guideline development group on 'CFS/ME' and its apparent skewed appraisal of the scientific evidence base[4]. Along with other documentation[5], objective study of material produced by said international panel would, I believe, considerably undermine the case for Professor Wessely being awarded a prize for scientific excellence with regard to "ME (chronic fatigue syndrome)".

    Turning to the matter of alleged threats against Professor Wessely and given the associated grave accusations of widespread abuse from the ME community. Is it not time that questions were asked in parliament and elsewhere demanding conclusive proof of these alleged threats against him? Have such matters been investigated by the Police and been shown to have any substantial basis to them? Is there for example actual evidence of Police issuing warnings to individuals from the ME community? Has the Crown Prosecution Service ever issued court proceedings against any such individual from the ME community? If independent evidence of individuals threatening violence does exist, are they many in number and can they be fairly described as being representative of the ME community?

    Claims of such threats, are not only thus far lacking publicly verifiable supportive evidence to my knowledge, they are lacking perspective. It feels to me like Professor Wessely and sections of the media are effectively daemonising an entire generation of unfortunate people with serious WHO-classified (ICD-10-G93.3) neurological illness[6]. All because, as far as I am aware, perhaps a few so far unnamed, unrepresentative individuals have allegedly issued threats against his personal safety.

    There most certainly is however to my knowledge evidence available for public scrutiny that Professor Wessely has misrepresented both the nature of the disease that is Myalgic Encephalomyelitis (ME) and its World Health Organisation (WHO) classification and nomenclature[7]. There is also serious evidence that the kind of psychosocial views on "ME (chronic fatigue syndrome)" advocated by Professor Wessely and his colleagues have had very unfortunate consequences for patients[8].

    It would clearly be wrong for any person with ME to issue a credible threat of bodily harm to anyone. Is it not however understandable that vulnerable patients will express different orders of frustration if irresponsible misrepresentation has in fact been done by someone who has a professional duty of care and scientific accuracy? Moreover, there is a world of difference between patients venting understandable frustration and patients actually issuing threats of bodily harm. Do we not need objective evidence to show that Professor Wessely's claims of "intimidation" properly differentiates between the two? We also clearly need assurance that Professor Wessely and his media friends differentiate between abusive threats and legitimate erudite complaints regarding alleged professional and scientific misconduct[9]. Do not all medical professionals, particularly those receiving substantial public funding, need to be properly accountable to professional and public bodies?

    In summary, if there is any hard evidence that ME patients have actually gone beyond venting frustration and have issued actual "threats" regarding Professor Wessely's personal safety then the extent and objectivity of that evidence needs to be independently verified and put into proper context and perspective? It is not right that tens of thousands of innocent and vulnerable patients are associated with the alleged misdemeanours of a few and denied appropriate biomedical care that is increasingly justified by good science[10].

    Anglia ME Action [UK], 7 November 2012.
    http://www.angliameaction.org.uk/docs/wessely-threat-proof.pdf
    contact@angliameaction.org.uk


    REFERENCES:

    [1] Source, Sense about Science, November 6, 2012:
    http://www.senseaboutscience.org/pages/2012-maddox-prize.html

    [2] On BBC Radio 4, Friday, 29 July 2011, for example:
    http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550947.stm

    [3] Myalgic Encephalomyelitis: International Consensus Criteria [ME-ICC], Carruthers et al, Journal of Internal Medicine, 2011. Doi:
    10.1111/j.1365-2796.2011.02428x:
    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract
    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf
    Also see the important 2012 follow-up document from the International Consensus Panel:
    Myalgic Encephalomyelitis - Adult & Paediatric: International Consensus Primer for Medical Practitioners, Carruthers et al, International Consensus Panel, 2012. ISBN 978-0-9739335-3-6:
    www.angliameaction.org.uk/docs/ME-ICC-Primer-2012.pdf

    [4] Dr Terry Mitchell, witness statement to the UK High Court, 23 June 2008:
    http://www.angliameaction.org.uk/NICEJRdocs/Terry_Mitchell_WS.pdf

    [5] See, for example, documentation at the 'ME Action UK' website:
    http://www.meactionuk.org.uk/

    [6] 'ME/Myalgic Encephalomyelitis (benign)' is classified along with 'PVFS/Postviral Fatigue Syndrome' by the World Health Organization (WHO) in the tenth revision of 'The International Statistical Classification of Diseases and Related Health Problems' (ICD-10) in chapter VI, diseases of the nervous system, other disorders of the nervous system, other disorders of the brain (G93.3) - ICD-10-G93.3. See:
    http://apps.who.int/classifications/icd10/browse/2010/en

    [7] See for example the many documented reports and sources of Professor Wessely's statements and claims at the 'ME Action UK' website:
    http://www.meactionuk.org.uk/

    [8] See for example the case of Sophia Mirza in 2005, a young ME patient who was accused of exaggerating and misattributing her illness, was forcibly removed into psychiatric 'care' and died shortly after from renal failure. The subsequent autopsy revealed considerable damage to her central nervous system along with other serious physical pathologies long associated with ME:
    http://www.sophiaandme.org.uk/
    http://www.sophiaandme.org.uk/docsindex/212.jpg

    [9] Such as, for example, Professor Malcolm Hooper's concerns with the widely criticised MRC-funded 'PACE Trial into CFS/ME' - see:
    http://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.htm
    http://meactionuk.org.uk/Update-on-the-PACE-Trial-110712.htm
    http://meactionuk.org.uk/Further_Articles.htm

    [10] See for example the Website of 'Invest in ME' a national UK charity running fully accredited annual scientific conferences in Westminster:
    http://www.investinme.org/index.htm
    And see:
    Myalgic Encephalomyelitis: International Consensus Criteria [ME-ICC], Carruthers et al, Journal of Internal Medicine, 2011. Doi:
    10.1111/j.1365-2796.2011.02428x:
    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract
    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf
    Also see the important 2012 follow-up document from the International Consensus Panel:
    Myalgic Encephalomyelitis - Adult & Paediatric: International Consensus Primer for Medical Practitioners, Carruthers et al, International Consensus Panel, 2012. ISBN 978-0-9739335-3-6:
    www.angliameaction.org.uk/docs/ME-ICC-Primer-2012.pdf

    [MESSAGE ENDS - PERMISSION TO REPOST ALL OF THE ABOVE].
    http://www.angliameaction.org.uk/docs/wessely-threat-proof.pdf
     
  8. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    (from a personal perspective - "stuff Royalty !" ) But on the broader issue - you seem to have failed to grasp that Clare Gerada is Chair of the RCGP Council. It would be normal practice for any health organisation that wants to have the Chair of the RCGP Council attend a conference - to issue an invitation, with lack of a formal invitation effectively demonstrating a wish for non attendance. The RCGP is an influential body and maintaining good and friendly communications with the RCGP leadership would be the smart thing to do for any UK health advocacy organisation.

    Perhaps you might like to consider how your 'held to say' comments might affect the attitude of Chair of the RCGP Council over M.E/CFs advocates and any consequent interactions between IiM.E and the RCGP.

    IVI
     
  9. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Did we feature the Examiner.com article in relation to the Maddox prize already? I didn't think so. Interesting 'twist' perhaps (bolded):

    :)
     
  10. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    A comment not only unnnecessarily snide, but hilariously recursive - I say it about you, you say it about me ..... conclusion: the forums are useless, filled only with people complaining that someone else has logged in to 'say' something someone else doesn't like. Can I say Hitler now and fulfill Godwin's Law just to top things off ?

    Surely not some sooper secret activities such as may be imparted only to the initiates of the Miskatonic University ?

    SC has provided all the links that anyone could need, to be able to understand the relevance of the FOIA and to understand why, not for the first time, Margaret Lane is floundering in the Westminster swimming pool.

    IVI
     
  11. Esther12

    Esther12 Senior Member

    Messages:
    5,384
    Likes:
    5,887
    Sorry for not keeping up with this thread, but I spent too much of yesterday look at youtube videos from furious Republicans raging about Obama, and from videos about Israel/Palestine. Death threats seemed to be a quite normal part of the videos and the comments section. A recent decision to release a computer game on Nintendo's new console led to death threats from fans who wanted the games released on Microsoft's instead. I would be amazed if Wessely had not received death threats.

    I'd also be very surprised if the claim the CFS militants were thought to be as dangerous animal-rights groups (or Islamic extremists according to the Telegraph!) was anything but more spin and manipulation. Unless there's evidence of actual attacks, rather than just the bursts of rage which seem an everyday part of our culture, then I'd like to suggest that there seems to be undue anxiety caused by the misinterpretation of normal signals and events: a form of social hysteria promoted by irresponsible media coverage. Soon we're going to have ever increasing numbers of suggestible researchers believing that they've been threatened too. Maybe.

    (PS: Please note that the above is, of course, unacceptable speculations which resulted from my failure to understand the power relationship which functions between researchers and little people).
     
  12. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    Context is everything - and my bunging in a hyperlink in forum post is unlikely to have any wider impact upon M.E/CFS advocacy. Same can not be said of contact with media or politics. Besides I haven't suggested that contact with media or politics should be absolutely absent of anything remotely emotive - but that the delivery (of whatever message) needs to be appropriate to maintaining credibility with the audience that is being addressed.

    You are missing the point - or rather two points: Firstly, it is irrelevant what the sender of a message believes, if the recipient experiences that message as 'spam' then for all meaningful purposes it is spam - the sender has failed to commicate with the recipient, other than arouse annoyance and possibly derision - communication fail !

    Secondly regulations only come iinto play after the fact - what matters is the upfront spam filters, both digital and human - if you can't get past those then - communication fail ! Recipient level (as opposed to server level) filters don't require the spam to come from a single or recognised source - key words and common title lines are enough to divert messages to the spam folder once enough messages have come through. And even if the automatic settings don't click in -where there's a spam based campaign (5,000 emails or whatever) the poor sods doing mail clearance will give up after a few hundred and simply get the techies to do a manual divert.

    Your presentaion of PR is overly reductive, and I don't think you understand it. PR is advocacy. And image, whether of spiced ham or something conveying the seriousness of an illness, dominates human perception. I don't see how you can sensibly invoke AIDS advocacy and then acknowledge the lack of equivalence - what are the common principles ? Quite apart from anything else the history of AIDS advocacy has been told by the very people, who if we take their version of the story, were succssful in selling their story of AIDS more effectively than any other 'story of AIDS. Old adage 'never kid a kidder' - the reverse of which is - 'if you've got someone claiming to be an effective kidder' - take a very careful look at what they say about themselves.

    M.E/CFS is a brand. Some people think that M.E is a stronger brand and want to dissassociate the CFS part - but whatever the brand - getting ownership, and then maintaining the integrity of the brand in the critical view of the audience/customer base is essential to achieving long term influence. This very thread boils down to that simple position. The Maddox Prize simultaneously awards ownership of CFS to (in representative form) Simon Wessely and removes integrity from the competing ownership of patients whose agenda differs markedly from the 'experts as represented by the prize winner.

    Baited breath and all that. I'm dubious about the 'build it and they will come' approach, largely because there is value in engaging a wide range of people at the construction stage and if top down structures are what is envisaged then the existing organisations are likely sources of more effective effort than whole new 'sectionalist structures - particular where there is no attempt at inter organisation co-operation.

    IVI
     
    Firestormm likes this.
  13. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    Actually one half of the award was unequivocally about standing up for science ( http://fangzhouzi-xys.blogspot.co.uk/) and my own view is that including Wessely ( a bloody bureacrat !) substantially reduced the impact the award should have had. I don't favour grand schemes and I consider 'awareness' campaigns to be largely of dubious value. Most of what I've written about on these forums is focussed on 'stopping doing things in a dumb way, and start concentrating on what is smart'.

    Well yes - but I thought there was general concern that the rate of research should be increased by additional funding - isn't that one of the objectives of M.E/CFS advocacy ? And in the mean time there is the disability issue.

    Not sure of your meaning but - predicting research success is almost impossible; science advances predominantly by identifying dead ends and then starting anew. There are no certainties about what science will produce - and the basis of much of my argument is that M.E/CFS advocacy needs to have strength over the long term. We have to accept that there are aspects of M.E/CFS which may be intractable for many years to come. IMO advocacy needs to be developed with that contingency very firmly at its centre.

    IVI
     
  14. maryb

    maryb iherb code TAK122

    Messages:
    2,923
    Likes:
    2,055
    UK
    Enid I'm happy for you to keep fighting for me too:) people seem to forget sometimes that we are sick people doing our best to stay in touch with stuff, we don't always get it right or understand how other see it or even how it is meant to be but who cares we're all in this together so that how it is.
     
    Shell and Merry like this.
  15. alex3619

    alex3619 Senior Member

    Messages:
    7,689
    Likes:
    12,535
    Logan, Queensland, Australia
    First para: I haven't said that emotional rhetoric shouldn't be targeted. In fact analysis preceeds rhetoric. Stay tuned.

    Second para: if the tweet is annoying, message achieved. Keep it coming. What I am proposing is political not calm presentation of facts. This applies to selected political players, not typical scientists. Stay tuned.

    Third para: totally irrelevant. You really should read more about the fifth estate. Stay tuned.

    Fourth para: I have long said we need to invent our own advocacy. HIV/AIDS advocacy can only be used as a pointer. Either we try, or we fail. We learn as we go. The only way to seriously fail is not to bother trying. There is no guarantee of success, but there is a guarantee of failure if nobody bothers to try in the first place.

    Fifth para: CFS is not a brand. Logical fallacy there. It can be metaphorically described as a brand within very strict contexts. The map is not the territory. One of the logical traps we run into is the idea of branding as usually considered. I reject it. There are other ways to look at it. There will be whole blogs on this later.

    Sixth para; who said there is no attempt at interorganizational interaction? Seems you missed a lot of my posts and blogs. One of the points in starting something and learning is that as things proceed we learn then we do better. Sitting back and criticizing does have some value, analysis is important, but the objective is not to talk about it but do it. Setting up small projects gives us real world experience and feedback. Theoretical constructs are nice but real world feedback is far more valuable. Analysis is even more important after the fact. Most people learn from doing.

    Say what, Wessely owns CFS? The prize can give it to him? Lol.

    Alex
     
    jace, Valentijn and Merry like this.
  16. Quilp

    Quilp Senior Member

    Messages:
    182
    Likes:
    177
    Hello IVI, I think i see the human condition differently. Why challenge a strategy that is an inevitable consequence ? It's rather like asking a starving man to stop stealing.
    I do not know what impact that tweet might have had, but more to the point, none of us do. But I do know this, advocacy, like those in a position to affect change, comes in many shapes and sizes.

    Kind regards, Mark
     
    jace, Kati and Enid like this.
  17. Stukindawski

    Stukindawski

    Messages:
    79
    Likes:
    160
    I think the concern right now is that, various interactions with the 'usual suspects' from the BPS/psychosomatic lobby, is that they all tend to play out in their favour. They can choose who to respond to, and they cherry pick the more careless lines out of the patient community and reproduce them in papers and articles.

    Antagonism is paying off for them (whether you believe it is on purpose or, merely a result of an opinion on ME/CFS that is completely divergent from the experience of the illness and established Scientific observations). The AIDS community had to become Scientifically literate to gain success, and I think it is the Science of ME/CFS that must be challenged.

    I don't think you can stop patients from saying boneheaded things, because there is an anger and frustration that is a part of illness. Having someone to blame can provide a conduit for that emotion (and I'm not for a minute saying that I don't think that it's highly likely these people have a lot to answer for), but it can be too distracting. If you're going to investigate an individual you have to do it fully and you probably have to be pretty mobile to be able to do it.

    If you imagine a sword fight, one Swordsperson, looking for a predictable attack might attempt to taunt the other and use a rash and emotional movement upon which to launch a riposte.

    I attempted in this blog I wrote the other day (on the latest GET trial):- http://forums.phoenixrising.me/index.php?entries/on-the-latest-get-trial.1316/

    ...to avoid confronting Peter White directly where possible and instead focus on what he was doing and look at a wider issue of ethics in ME/CFS research.

    I think it would be a beautiful thing to get the volume of referenced and ad hominem-free criticisms of work produced by the BPS/psychosomatic lobby to brimming point. There is evidence to work with, it's just we can't just dollop something like x-thousand biomedical research papers. I think it is perhaps best to only reference something contradictory that you have some level of understanding on (at least, this is an aspiration for me heh).

    I intend to start looking at singular facets of ME/CFS research one at a time and seeing where they lead me. V02 max (something we don't hear too much about in the uk) is something that definitely interests me.
     
    Bob and maryb like this.
  18. Esther12

    Esther12 Senior Member

    Messages:
    5,384
    Likes:
    5,887
    I find it funny that no-one seems concerned about this. Patient concerns are being so misrepresented, by those that patients are concerned about, and yet there seems to be no sense that academic journals or journalists in the media have any responsibility to talk to patient advocate, organisations, or just those on forums to get their side of the story. The points of concern often are complicated, and can be easily misunderstood, but shouldn't that mean that writers have a responsibility to do some research themselves? Maybe not: I've been reading 'Flat Earth News' by Nick Davies, and he seems pretty despairing of the British news media.
     
  19. Bob

    Bob

    Messages:
    8,857
    Likes:
    12,438
    South of England
    Some time ago, I was having a debate with someone on Twitter, about the nature of ME,
    The other person pointed me towards the NICE guidelines and told me that there had to be an evidence base for psychiatric interventions, if NICE recommended them, therefore CFS is a psychiatric illness.
    I was able to point out that the psychiatric evidence is questionable and weak, with, for example, only 14% of patients responding to treatment with CBT, in the Cochrane meta-analysis review, using subjective measures only. (And similar results with PACE using questionable methodology, and subjective measures only.)

    The other person sort of accepted the weakness of the psychiatric evidence, but then challenged me to provide strong research evidence that ME is a biomedical disorder.
    It was a fair challenge, and it made me think about what evidence I could present in order to back up my assertion that ME is a biomedical disorder.
    There are a lot of biomedical papers, but many of them are weak, and some are contradictory, and some papers were dead-ends.
    I was stuck, when it came to providing convincing and over-whelming biomedical evidence, as I didn't know which the strongest research studies are.

    It would be useful to have a professional meta-analysis review of the biomedical literature. Does anyone know of any such thing? This is the sort of thing that our patient organisations should be organising and funding. (Ironically, the closest to a review of the biomedical literature that I've seen is a 2005 review of CFS by Sharpe and Wessely, which did acknowledge some of the biomedical research. But their review mainly discussed cognitive-behavioural issues,
    and was short on detail in relation to biomedical issues.)

    As an alternative to a professional review, a simple list of the strongest research (i.e. best quality / highest powered), or most repeated research, would be helpful, graded in order of quality, and categorised by recruitment criteria. (No small task to compile such a list.)

    If anyone can point me towards this sort of information, that I may have missed, it would be appreciated.

    If there isn't any such info, or biomedical research reviews, then it's surely the sort of thing that our patient organisations should be funding? Maybe this is the sort of thing we could be asking our patient organisations to do?



    In terms of psychiatric interventions, the PACE Trial, the FINE Trial, and the Cochrane meta-analysis review all found CBT and GET to be unhelpful for the vast majority of CFS/ME patients.
    The PACE Trial (11 to 15%) (using questionable methodology), and the Cochrane Review (14%), both found that very few patients responded to CBT or GET, and this was using subjective measures only. For objective measures in the PACE Trial, the results were worse: CBT had no therapeutic effect whatsoever, and GET did not achieve a clinically useful therapeutic effect, and all patients were left severely disabled after treatment.
    So it has been clearly demonstrated, repeatedly, that CBT and GET are not the answer for the vast majority of patients.


    If there are not any biomedical treatments, with an evidence-base of high enough quality for NICE to recommend, then it does leave us rather stuck.

    Personally, I would like to see ME/CFS clinics offer the following: Education re the nature of ME (without any psychiatric politics involved); pacing technique instructions; counselling (to help people cope with living with a severe, chronic, and sudden onset illness); occupational therapy, or similar, if helpful; social care and personal assistance care; and anything else along these lines that might be helpful.

    Of course, ideally, expert clinics should be set up that investigate symptoms in detail, and collect data, and offer alternative diagnoses if/when appropriate, and which bring in experts from other fields to look at our weird and not-so-wonderful symptoms.
    These clinics could also include patients with other similar neuro-immune, auto-immune and infectious diseases which have an array of unusual symptoms, and no treatments.


    I do agree with the people who have said that we need to be more sophisticated than simply (verbally) attacking psychiatrists. But I don't believe that psychiatrists should be able to promote their nonsense unchallenged. I think we need to challenge their assertions persistently and rigorously. The trouble is that we seem to lack biomedical evidence with enough strength and quality to easily undermine the psychiatrists' assertions. I'm not saying that there is no biomedical research of good quality; just that not much of it is conclusive in simple terms. Ironically, the PACE Trial seems to be some of the strongest evidence that we have against their assertions.
     
    Stukindawski and jace like this.
  20. Bob

    Bob

    Messages:
    8,857
    Likes:
    12,438
    South of England
    Yes, I agree. Very few (if any?) of the journals which have published a polemic by Wessely & co., have given an equal platform to patients, or patient organisations, to promote their views. And yet some of the journals must have been inundated with protests, after publishing their stuff about ME patients. They must surely know, by now, that the situation is more nuanced, and more complex, than the psychiatrists (who obviously have a vested interest in promoting their own paradigm) are asserting. It is surely obvious by now that the field of CFS is not settled, and that the psychiatrists have an interest in promoting their empires. Why haven't these journals investigated the nature of ME/CFS (other than asking psychiatrists), or investigated the use of CBT on ME patients (i.e. what cognitive deficits, exactly, does it purport to address), or how successful CBT has been demonstrated to be?

    It all seems very one-sided.
    It's a shame that the large patient organisations don't employ research writers to address this kind of stuff.
     

See more popular forum discussions.

Share This Page