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

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

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    So you are still asking for "proof" of alleged complaints that have either not resulted in a police investigation through lack of evidence, or which have been investigated and dismissed, or where the police have advised against taking the complaint forward, or which the CPS has rejected as not being in the public interest to bring to court, or which may be awaiting a court hearing or which may still be in the process of being investigated.

    I cannot see that in any event the police or the parties involved or their employers are going to provide "proof" in the form of personal details of those involved, dates, details of any complaints made or police complaint numbers and I would expect that anyone making a complaint is advised not to discuss in public and certainly not to discuss in public if a case were awaiting a Magistrates or County Court hearing.

    What publicly provided "proof" is going to satisfy your demand for "evidence."
     
  2. Firestormm

    Firestormm Guest

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    Hi Suzy,

    I was just writing on the MEA Facebook page, that when I saw the question tabled, I did actually wonder if Lady Mar was being sarcastic. Either way, I totally concur. To pursue demands for 'proof' is wholly wrong. What we need is to disassociate our 'community' from any of this kind of thing (the threats etc.). People will begin associating ME with hostility and the important issues will get sidelined. Hope to the Gods this ain't already happening. It isn't at a local level but nationally, in the media, among MPs, Scientists etc.? Who knows. Just wish people would take some time to think before posting publicly, to check their sources, to ensure (where applicable) it is made clear that what they say is their own opinion and not generally representative when it so often isn't and can't be etc. etc.
     
  3. alex3619

    alex3619 Senior Member

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    "Criminal, violent or threatening behaviour towards anyone, including medical researchers, is not acceptable. Where there is a threat to individuals involved in medical research, it is a matter for the police to investigate and take the relevant action"

    This is a normal non-reply. Are there people who have issued threats? I think its possible. Were they serious? Maybe. Is this justification for sweeping statements and accusations about advocacy? Not even close. Its identical to smear tactics, well used by politicians, not typically used in relation to medical issues though not unknown.

    One of the things that is clear, and I think can be demonstrated, is that arguments about militants and stigmatized advocates are often essentially hype, and in some cases blatantly wrong. We need to stick to specifics though, give instances, like the comments made about written responses to the White et. al. PACE paper in the Lancet.

    FOI will probably not apply to existing investigations, whether ongoing or recent. Its highly likely it wont apply to older ones. We don't need details. We need confirmation of their existance, and the scope. The nature of the question asked, and who it is asked of, are important. At least one person who has complained about allegations made about them, who is an advocate, has failed to reach a satisfactory answer. This person made some investigatory contacts with employers. Soon after "employers were harassed" became a new claim against advocates. This is a matter of public record, though not indisputable, and I am unsure if I should name names. Contact me privately if you want to know more. In short, if you disagree, even if you are a published researcher in good standing, or you dispute claims, or you investigate, there is subtle and not so subtle implications in statements made by some that advocates are unreasonable, irrational, or deranged. I am deliberately being careful about what I say.

    Similar perfectly reasonable and legal requests under FOI were suddenly implied as harassment.

    Bye, Alex
     
    Enid likes this.
  4. Enid

    Enid Senior Member

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    The specific details of SW's claims (used to implicate all ME/CFS sufferers) we will probably never know for the reasons given (Suzy @ 261) though I can't say that the exact details would not have been interesting - I think we all know in the UK that psychiatric involvement took ME off in the wrong direction, diverted funds etc., and any attempt to counter with science/medical findings were seen as harassment too.
     
  5. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Enid, in Post #261 I quoted from your post before you had gone back and added "(and details)".

    But the above is not relevant to the issue of whether these calls for "proof" and "evidence" and the raising of questions in Parliament and calls for approaching MPs are misguided.
     
  6. Enid

    Enid Senior Member

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    Can't follow through Suzy (being very limited) but if the Countess of Mar (long term advocate) is pursuing her dedicated work for ME in parliament whatever said or done is for good reason. She above all knows the "politics" - I'd go with her wisdom in the matter. But still criticise "standing up for science" (a joke) and follow alex's ideas on more advocacy.
     
  7. Bob

    Bob

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    Yes, that's what I was thinking of, when I suggested a FOI request.
    i.e. simply the number of complaints made to the police, regarding illegal threats, etc., and the number of convictions relating to the complaints.
    I don't know if that would be available under the FOIA, as I haven't looked up the details, but it seemed like a sensible way to try to get the info, if required.

    However, I do agree with the people who have expressed doubts about the worth of perusing this line of action.
    I can't see the point myself. (Just my personal opinion.)

    Yes, FOI requests, formal complaints, and scientific engagement, have all been labelled as harassment, or similar, by various parties. (i.e. legitimate engagement with public and private bodies and the authorities.)
     
  8. In Vitro Infidelium

    In Vitro Infidelium Guest

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    :lol: I think I may now be ‘doomed’ to carry that epithet for evermore.:eek:
    Others have previously pointed out that I ‘don’t practice what I preach’, in that what I commend as effective advocacy is counter to how I engage on the forums. I’ve always been very determined that I would only participate on the forums on the basis that I was an individual arguing from a particular perspective, I’m not trying (and don’t want to try) to persuade anyone of anything, other than by expressing a personal view, supported as relevant by some external references. In the case of advocacy the available references are ubiquitous and if people want to understand the details of marketing, promotion, PR, philanthropic advocacy etc, then the number of sources are legion. And while I’d be very pleased if my contributions here “inspired better answers”, I can’t honestly say that’s my ambition; I’m just some bloke with something to write about on the internet.

    Whether I (or anyone else) should be attempting to be something more/other than “just some bloke (or blokess) with something to write about” when posting about M.E/CFS, is an interesting question. In the couple of years that I have been posting, a lot of what I’ve written has been greeted in terms that effectively said that I can’t possibly be someone with M.E/CFS because someone with M.E/CFS wouldn’t ‘write/think like that’. Against that background I‘ve just been content to present a view that might strike a chord with readers of the forums (perhaps a very small minority) who themselves ‘don’t think like that’.

    I did write (a year ago) what I considered to be a positive contribution to a discussion of M.E/CFS advocacy in a blog post: http://forums.phoenixrising.me/inde...elations-not-a-mythical-rebirth-part-one.893/ which was matched by something rather more deconstructive - http://forums.phoenixrising.me/inde...elations-not-a-mythical-rebirth-part-two.898/
    This is something that I have written about previously, and which established distinct limitations on what level of robustness the issue can be addressed. In deference to the hardworking moderators I don’t want to resurrect past problems so I’ll proceed very cautiously.

    IMO the issue of mortality is far too ambiguous to be a useful advocacy issue. The numbers of deaths that are even marginally attributable to M.E/CFS is very small relative to the accepted prevalence levels. Further even in individual cases where attribution of M.E/CFS as causative seems well established, ambiguity exists. I couldn’t understand why posts on another forum were so insistent about the importance a coroners decision where (complications of) M.E was adjudged causative. The way the judgement read seemed in no way to exclude M.E as being a psychiatric condition and hardly a useful subject to present in advocacy.

    There is also a general point about mortality in that numbers and qualifications start to apply in invidious ways. Large numbers count – small numbers don’t – unless there is victim qualification – children (high score) mums – (high score) dads (medium to high) young people (variable – young handsome, beautiful, successful = high, average young = meh unless gory death) middle aged (meh – unless ‘grandma’ or gory) elderly (meh) frail elderly (meh – unless abused/neglected). The moment one has to start making these calculations, the whole validity of the approach is lost and I wouldn’t touch it with a barge pole, at least not until there was some cast iron research that says x numbers are dieing each year.

    As to the ‘most seriously ill’. I think this another area of invidious judgements and ambiguity. What numbers are we talking about ? is the level of illness that demands tube feeding actually something that allows a realistic inclusion within the M.E/CFS diagnoses that produce global patient populations numbering in the millions ? One really doesn’t want to be promoting advocacy initiatives that invite questions about one’s own key positions – apart from anything else it begs questions about the advocate's own competence. At present the only really strong positions that M.E/CFS has is prevalence numbers and levels of lifetime disability – those facts demand political, media, and service level, attention; I’m loath to support anything that brings those facts into question.

    There is also a reasonable concern regarding attenuation of message that results from parts of the patient population demanding to be considered as more empowered by dint of a disability differential – “I’m (or “my child/spouse etc is) more sick than you”, is in my view a really crappy position to take – saying (without any evidence) that x% are the most affected, raises the question of whether the remaining y% are actually ill. Basic rule of advocacy – don’t raise questions you can’t answer, unless the lack of answer furthers your cause.
     
  9. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Well I'm sorry, Enid, but I don't share your confidence.

    In the last few years, the COM has made errors in Parliamentary questions concerning CFS and its chapter coding within ICD-10. Lady Mar has also supported CBT and the NICE Guidelines* and was partly responsible for changing the policy of the APPG on ME on holding open meetings - which means that members of the public are now barred from attending APPG on ME meetings and initially so were all patient orgs other than the APPG on ME secretariat reps.

    Something else that needs to be understood in relation to FOI. FOI offices provide copies of documents (subject to exemptions) and information that an institution holds on file. If an employee has made complaints to the police in a personal capacity in relation to written, internet, email, verbal or telephone communications, as opposed to the institution making a complaint on behalf of an employee, then there may be no documentation held on file within that institution that relates to the making of police complaints. So leaving aside the issue of police confidentiality or FOI exemptions, a request for information could be met with "We do not hold any information on file in relation to..."

    *for which she was requested to stand down as patron of the 25% ME Group.
     
  10. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Bob, the FOI exceptions are set out in the link I gave to the ACT.
     
    Bob likes this.
  11. user9876

    user9876 Senior Member

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    I think we should be stronger than disassociating our community with threats but be vocal about how unreasonable it is to accuse a whole community who do not support violent threats. Its important to ensure that challenging his ideas is seen as different from harassment and treats.

    I've just started reading Smith and Wessely's latest paper which is pushing a story that there is reasoned objective science (him) and subjective opinion (everyone else). I find this a ridiculous argument but I feel they are trying to set themselves up as the only authorative source by denegrating other people, labelling all with the worst practices of others.

    I'm concerned that this widespread accusation of threats and harassment is being used as a device to dismiss opposition to their ideas.
     
    barbc56 and Min like this.
  12. user9876

    user9876 Senior Member

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    I think it is important that we have a range of opinions represented on this forum. Discussion and opposing or differing opinions helps in developing ideas. So keep on contributing
     
    Valentijn likes this.
  13. user9876

    user9876 Senior Member

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    Personally I think making an FoI request about this is a bad idea. Much better to concentrate on questions about the science.

    Email, forms part of the official record and the ICO has ruled that personal emails can form part of the official record when used for official business. I think this was done in response to Gove trying to hide stuff using gmail to talk with his official advisors.
     
  14. Firestormm

    Firestormm Guest

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    I think that this is an erroneous concern User but one I have thought about for a while now as others appear to be using this as a reason to continue the 'assault' against anything and everything he says, does, or publishes.

    You're right to say that challenging published ideas shouldn't be slapped down simply because we condemn threats or harassment, but it has to be kept in perspective and relative to the published paper's content for example.

    How many of the comments that are repeatedly used against those following (how can I term it) a 'psychological' approach are historic and based largely on a personal opinion that 'I ain't mad you nutter!'

    How much time and effort is taken up discussing these issues I wonder? How productive have they been? A good cathartic moment is refreshing for everyone I suppose - though I'm rather surprised Wessely et al. have not come out with some paper or other to try and explain why these threats and harassments are occurring from a psychological perspective. "Why is it that psychology and psychiatry are getting such a bad reputation in the modern age?" But then of course Wessely wasn't the only one who was reporting such issues - was he? I mean last year he was but one - I recall the BBC Radio 4 Today Programme.

    So we all agree that 'false illness beliefs' are not something we consider part of our own experiences of 'ME'. We all I think agree that our personal experiences of CBT are either that it can help with learning to cope better in terms of understanding why we might react to certain things in the way that we might; or that it follows this FIB approach and is distasteful even to consider - either in whole or in part - because we are sold on alternate possible explanations - in whole or in part.

    And that those who find mobility a particular concern - and sustained/repetitive exercise - think that GET is potentially dangerous unless you happen to be working with an understanding and knowledgeable practitioner (as per CBT too I suppose). We also probably all agree that the 'balance' in terms of research has swung way too far to the psychologists. That 'even' the NICE Guideline bends in this direction affording very little significance to pharmacological management of symptoms and other non-pharmacological methods excluding CBT.

    I think you'll find that Charlotte Smith wrote the paper User and that Simon was there in a consultant capacity, but I could be wrong of course. There are some aspects of that Review that perhaps we would do well to consider in the future. And, yes, parts that are perhaps unfair.

    Edit: Link added to recent blog post: ME/CFS Harassment of Researchers 17 November 2012:

     
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  15. user9876

    user9876 Senior Member

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    I'm still reading the paper. My concern is that this discourse offers a group think type of view of we're right and everyone else is wrong rather than a specific Wessely thing. I don't find the pushing of old quotes particularly helpful when there is so much that is questionable and wrong in the arguments presented in each paper they produce. I'll comment further on the paper on the thread discussing it when I've finished.
     
    Firestormm likes this.
  16. Kati

    Kati Patient in training

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    Well, IVI, while I didn't have a long term or even mid term strategy, the results from this mini campaign to Mrs Wessely and UK government ended up inthe fact the Mrs Gerada was waiting for an invitation to attend Invest in ME, and that the Inest in ME organization Invited Mrs Gerada to the incoming May conference, on Twitter and said that formal invitation would come through the mail.

    As for me I held myself to say that she wasn't royalty and that she could do like everyone else, register and attend.
     
  17. biophile

    biophile Places I'd rather be.

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    Firestormm. I had a look for Wessely's exact involvement:

    I suppose this is the 1989 paper, which outlines the fear-avoidance and deconditioning model:

    S Wessely, A David, S Butler, and T Chalder. Management of chronic (post-viral) fatigue syndrome. J R Coll Gen Pract. 1989 January; 39(318): 26–29.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1711569
     
  18. ukxmrv

    ukxmrv Senior Member

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    DX watch (Susie Chapman)

    I can't see why you logged in to let us know that you thought Kevin Short's actions (and your decision to name him specifically) as "misguided".

    By entension I assume that you are also criticising the Countess of Mar as being "misguided" as well.

    It may be that both Kevin Short and the COM intended to do this for their own reasons and this reasons just aren't known to you.
     
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  19. Firestormm

    Firestormm Guest

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    Thanks Bio. Looks like I was wrong though about his not seeing patients. It's the research he's not apparently involved with!?! Maybe this means as a primary researcher i.e. completing research off his own back. I can't comment on the 1989 paper - haven't read it. Might not bother :)
     
  20. Firestormm

    Firestormm Guest

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    See above #274

    Another misquote out of context from Hooper/Williams that I have taken from the comments beneath the blogpost:

    This kind of thing, referred to previously in this thread, is ridiculously inept and damaging. Standing behind something produced by a source who you think is 'safe' and 'reliable' without checking the quotes yourself is plain 'crazy'.

    Having said that, I haven't got the paper referred to, so haven't checked it myself but I'd be surprised if it were erroneous :)
     

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