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ME patients protest coverage of threat allegations

Discussion in 'General ME/CFS News' started by Roy S, Dec 17, 2012.

  1. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
    From Facebook

    Rosie Cox <> Permission to repost

    This letter was sent to The Independent today:


    Subject: Myalgic Encephalomyelitis


    We are patients and carers of patients who suffer from myalgic
    encephalomyelitis, a neurological condition as listed by the WHO since 1969, for which there is no effective treatment or cure. We have been dismayed at the extensive coverage given recently to allegations that threats against psychiatrists are preventing research into ME. We have been appalled at comments by some members of the medical profession portraying ME patients in a
    negative manner, and believe the comments to be professionally irresponsible and unethical. We are offended by the suggestion that grievances are based purely upon a prejudice against psychiatry. It is untrue and displays a blatant misunderstanding of the issues.

    We and our families and friends do what we can to support charities like ME Research UK, Invest in ME, TYMES Trust and The ME Association because we want research to help us now and to prevent others suffering from this disease in the future. We believe the attention given to allegations of minority behaviour is disproportionate and should be balanced by serious coverage of the legitimate
    grievances about the paucity of biomedical research and the lack of understanding,treatment and support for ME patients, all of which exacerbate the impact of the disease.

    Yours faithfully

    Yvonne Foss - (full address supplied)

    Rosie Cox
    Veronica Jones
    Alison Orr
    Lynn Swann
    Jill Cooper
    Joan Crawford, MA MSc CEng CSci
    Tom Kindlon - Dublin
    Connie Nelson
    Jean Harrison - President MAME, Salem MA, USA
    Linda Vansteenwinckel – ME/CFS-Evolving Science
    Annabel Schleutker
    Prue Schleutker
    Wendy Reason
    Horace Reid – ME Alliance Northern Ireland
    Joan McParland and Newry & Mourne ME/FMS Support Group Committee Members
    Louise Dalton
    Richard Cann
    Trevor Wainwright
    Janice O'Malley
    Elizabeth Moncrieff – Perth
    Duncan Cox
    Lesley Cox
    Adrian Wood
    Carole Gardner
    Anthony Gardner
    Charlie Mogg
    James Cox
    Joe Cox
    Mary M. Schweitzer, PhD - USA
    Matthew George Webb
    Joann Molly Creed
    Helen Jane Webb
    Georgina Molly Webb
    Kwende King Webb
    Marilene Bierens – Netherlands
    Annette Barclay
    Roger Morgan
    Tracey McCormick
    Drew McCormick
    Sara Marlow
    Anne Robertson
    Alison Wallace
    Margaret Williams – East Kilbride
    Roger Garnham
    Jennifer Griffin
    Serena Blanchflower
    Gill Suttle – Ross-on-Wye ME Support Group
    Carol Smith
    Richard Ensor
    Iain Lee – Fife
    Wanda Lozinska
    Laurence L. Swift
    Daphne Caton
    Maureen Stockburn
    Wendy Jordan
    Andy Micklethwaite
    Kirsteen Wright
    Dilys McGill
    Salli Booth
    Vicky Gifford
    beaker, taniaaust1, SOC and 8 others like this.
  2. justy

    justy Donate Advocate Demonstrate

    Thanks Roy, a good letter - any chance that it will actually be printed?
  3. Enid

    Enid Senior Member

    Great Roy S - we are so tired out of being blacklisted in the UK by a collusive media onslaught (ah well we know the perpretators only too well). Strange isn't it that the ill have to fight the ignorance of UK medicine led over decades by wonkers. May they all get it, unable to rise from their beds tomorrow.
    Katherine likes this.
  4. Shell

    Shell Senior Member

    Good letter. I hope the Indi publish it, but I'm not holding my breath.
  5. Firestormm


    Cornwall England
    The letter was sent prior to the weekend with a view I thought of it being published on Sunday (yesterday). It didn't appear in the on-line or paper version I understand (from the comments on Facebook).
  6. barbc56

    barbc56 Senior Member

    Just my two cents worth. I think the letter needs to also acknowledge that if any threats were made by ME/CFS patients they would be a minority and that the majority of patients do not endorse these actions. It's an issue we can't deny.

    I think adding this statement, would round out what is the start of a well written letter plus add credibility.

    Barb C.:>)
  7. ukxmrv

    ukxmrv Senior Member

    I don't think that patients who haven't made threats need to acknowledge the actions of the alleged ME patients who have made the alleged threats.

    It's between Prof W, the police and any individuals who may have made threats to determine the course of action on this. We haven't seen any evidence of death threats and no evidence that ME patients may have made them.

    One of the reasons i like this letter is because it's not there. Don't think that it detracts from credibility at all.

    Anyone who feels differently can write their own letter of course. The signatories of this letter gave it thought and decided not to include it.
    allyb, natasa778, Merry and 4 others like this.
  8. barbc56

    barbc56 Senior Member

    Didn't mean to imply that this letter detracts from credibility. Its a good letter. I just think it would add even more credibility. We can't ignore the elephant in the room. I would hate to see others saying we are in denial.

    But yes you are right, others can write their own letters and what the authors wrote is certainly their decision.

    I just think it's a moral issue but again that's my perspective and others may think differently. I hope the letter gets printed. Maybe a letter addressing the issue of threats might be another good strategy at a later time.

    I'm just thinking out loud here.:)

    BarbC. :>)
    TessDeco likes this.
  9. ukxmrv

    ukxmrv Senior Member

    I don't feel comfortable addresssing any threats unless we know that they exist, what they are and who has made them. For me personally the ethics side says to know more about them before commenting. If a case was ever brought before the law for example and as long as my comments didn't prejudice the case I'd comment then. Until then my morals tell me not to comment on something I don't know anything about. I'd hate to be unfair (for example) to an old patient who was harmed by treatment directly. The moral side needs to include fairness to patients.
    allyb, beaker, Shell and 2 others like this.
  10. PhoenixDown

    PhoenixDown Senior Member

    Saying that is no good because if it turns out that the threats are real, then we'll all end up looking like idiots. It will serve to harm the reputation of all ME/CFS patients. We have to be cautious.

    One way or the other I think these threats are being used as a political tool against those who oppose mainstream views that these illnesses are psychogenic, factitious, or respond well to CBT - none of which I agree with.
    Firestormm likes this.
  11. Firestormm


    Cornwall England
    I don't suppose it will come as any surprise for me to say that I don't share this view but I do share the point you expressed in your first paragraph.
  12. barbc56

    barbc56 Senior Member

    I think that is true of both sides as well as each side believes what they are saying is completely accurate.
  13. PhoenixDown

    PhoenixDown Senior Member

    Could you explain how? Surely overall the reputation of patients was harmed after this escapade, do you agree that harming the patient's reputation is contradictory to aiding the health of patients and therefore is an action deserving of contempt?
    Shell likes this.
  14. Bob


    England (south coast)
    Personally, I believe that some researchers have received threats, of some sort. (A variety of CFS researchers have said that they've received threats or harassment, including Charles Shepherd and Judy Mikovits.) But for me, this specific subject is a distraction, and not relevant to the main issues. I think we should focus on the substantive issues, such as the nature of ME, and the research.

    I can't see how patients are using the issue as a political tool though. I just see patients trying to defend themselves against a PR onslaught that portrays them as unbalanced extremist psychiatric patients, and against a PR machine that appears to be desperately trying to persuade academics to view and treat CFS/ME as a psychiatric/behavioural disorder.
    allyb, Shell, Valentijn and 4 others like this.
  15. Jarod

    Jarod Senior Member

    planet earth
    Yep. And the propaganda is not working very effectively anymore.
    ukxmrv likes this.
  16. ukxmrv

    ukxmrv Senior Member

    I think that accepting the claims without evidence makes us look like "idiots" (as you put it Pheonix Down).

    We need to examine these claims are closely as we do with all the other claims around this disease. Just accepting them without critical apprasial makes us look gullible.

    The Wessely group are throwing in the "death threats" with the quite legal FOI and questions asked in the HOL by the COM. They are trying to tar all ME patients with the same brush.

    They are not behaving in an ethical or moral way in my opinion. It doesn't mean that we act in the same way, far from it.

    Other groups don't apologise or condone death threats with no proof by members of their own groups even when there has been a court action and gulit found.

    I'd not ask Prof Wessely to apologise for Dr Shipman or Dr Bilal Abdullah even if he appeared on air on the same day.

    In a UK doctors have carried out horrific crimes and the GMC and doctors don't appear in the media or write letters apologising for their actions over and over again. I don't think that is appropriate for them to do so unless they were involved or ignored the crimes from a position of authority.

    It's the work of individuals and those individuals should take the blame. We have no control over what individuals do and we have no proof that it was a person with ME.

    As I don't think it is appropriate for innocent ME patients to apologise in this case. I don't think it is appropriate for the Wessely group to use the alleged death threats to cover their own unwillingness to deal with patient concerns and act unethically themselves.
    Wildcat, Shell, Valentijn and 3 others like this.
  17. PhoenixDown

    PhoenixDown Senior Member

    Scenario #1 - We say the threats are fabricated: No evidence is produced in regards to the death threats, but no one believes us that it's a campaign against us, they side with the accusers and think we irrationally fear psychiatry.

    Scenario #2 - We say the threats are fabricated: Evidence for death threats are produced, and we look like apologists for terrorists who irrationally fear psychiatry.

    Scenario #3 - We don't say the threats are fabricated, but no evidence is produced, minimal reputational damage.

    Scenario #4 - We don't say the threats are fabricated, but evidence is produced, however at least we've distanced our selves from the few bad apples who did it.

    Feel free to add any more. May be there's a really weird scenario where Arnold Rimmer isn't such a smeghead.

    In anycase we've got work to do defending our reputation, crushing misrepresentation of evidence, and critiquing guidelines and diagnostic criteria. I agree that random ME/CFS patients or advocates should not have to apologize for on this matter, however publicly condoning it would only make matters worse.

    Edit: As for who did it, I think I've raised this before somewhere, could have been from someone from one of many groups of people who have been pissed off by certain biopsychosocial model proponents. Gulf War Illness, PTSD, Fibromyalgia, MCS, ETC. I don't think it was necessarily an ME patient, the news report never said. People just assume.
    barbc56 likes this.
  18. ukxmrv

    ukxmrv Senior Member

    Scenario #5. There were or were not death threats and no evidence is ever produced. The friends of SW group use the media and medical journals to write about this for years and years and years. The patient group mention this in every letter and say that they don't condone it. All the public and the media hear is "death threats, ME, death threats, ME, activists, terrorists, ME, death threats, ME dangerous people, ME activists bad".

    This needs to stop now.

    There have already been letters published which say that patients do not condone the death threats. When do we sto?. If we keep doing this forever, and everytime time there is a media report then it goes on forever. The more we respond to the arguments that they choose to bring into the public arena we loose.

    The "death threats" argument sucks the life out of anything further in any letter we write. It's too powerful and emotive in the public's mind. That why the Wessley group will keep bringing it up. They will use it for that reason.

    We need to bring to the forefront the suffering, neglect and urgent medical needs of PWME. If we keep apologing or even mentioning the death alleged threats that is all the pubic will remember. If we say that words it overshadows our message. We are doing the work of the SW lobby for them.

    We need to stop doing this. Reacting to their arguments and choosing what the arguments will be in public instead.
  19. asleep

    asleep Senior Member

    Absolutely agree.

    If there were indeed threats (though it's interesting how so many "skeptics" seem to take the claims at face value), they are a legal matter between the parties involved. Nothing more.

    It is important to understand why it is counterproductive that patients must preface any public criticisms of Wessely and his colleagues with denunciations of the alleged threats.

    Firstly, as ukxmrv pointed out, it serves to undermine legitimate criticism made by patients through a combination of guilt by association and poisoning the well. By continually answering for the alleged actions of others, we are voluntarily allowing ourselves to be defined by their alleged actions. That Wessely and supporters seem so keen on disseminating and encouraging this guilt by association says a great deal about the nobility (or lack thereof) of their actions and motivations as well as their ability support their theories empirically without the aid of emotional subterfuge.

    Secondly, it is a means of framing the debate that allows Wessely and company to argue publicly on their illogical terms. For one thing, by taking them at their word without proof that such threats occurred, we are ceding to them a form of a priori authority outside the realm of normal evidence-formulation. This creates an atmosphere of disproportionate burden of proof upon patients and their advocates going forward. But even if the threats are real, they have nothing to do with scientific criticisms of Wessely School theories or the very real negligence that such theories have wrought on the community. It should not be surprising that this same tactic is frequently used by politicians and pundits to sidetrack and redirect debates to keep them from ever touching on substantive issues.

    Wessely and co have no firm scientific ground to stand on, which is why they are so desperate to browbeat us into the sand with them.
    Wildcat, Jarod, Adamskitutu and 4 others like this.
  20. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    There is a sense in which when we talk about threats, real or otherwise, or even if we are saying we should respond this way rather than that, we are playing their game. They set the rules. They have rebuttals ready. They have media attention.

    Its hard to disprove something so empty. What we can do is state what are are in a agreement with, and what our views are on the important and not distracting issues.

    However there is huge danger in totally ignoring these claims. If nobody protests, then why shouldn't everyone presume the claims being made about ME patients and advocates are right? All the claims? Without protest there is no sense of dissent, without dissent then it looks like we agree.They can say what they like, and we have prestamped approval.

    I think the real issue is to break the mold. Break out of the argument and set our rules. I am only just beginning to think along these lines. We need to create a separate debate about things that matter, not spend time on things that don't. By engaging on things that matter, these other issues may look more and more irrelevant and like distractions.

    Feedback, thoughts, comments?

    asleep, I noticed an important buzzword in this debate: framing. I can guess where it is coming from, and we are not thinking along dissimilar lines. There are issues that are being ignored because of how the debate is framed. We need to frame our own debate, on that I agree. Contact me private if you want to discuss this.

    I wonder if we shouldn't just agree that if any patients with possibly similar disorders are making possible threats that its deplorable. This puts our position, but does not concede theirs.

    ukxmrv, yes they are making this an emotive debate. It sounds reasonable, but they are conditioning emotive responses. Thats spin, not reasoned debate - PR over substance. They are good at that.

    Bye, Alex
    Adamskitutu and Valentijn like this.

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