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Wessely suspension draft letter is here!!!!!!!!!!

Discussion in 'Action Alerts and Advocacy' started by flex, Jan 24, 2010.

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Muffin, you are confusing criticism with ad hominem.

    In my view, Flex's comments were naive.

    That is not an "attack" on Flex as a person, but a criticism of his approach.

    In a thread elsewhere, Cort has commented that he questions the accuracy of some of the content of Hillary Johnson's articles and opinion pieces and that her robust style of advocacy can make him "squirm".

    Is that an "attack" on Hillary or criticism on the part of Cort?
  2. julius

    julius Watchoo lookin' at?

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    No, it doesn't.
  3. julius

    julius Watchoo lookin' at?

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    No idea. I'm only half Canuck in that I don't actually watch hockey, or sports in general. That's why I have to post under a pseudonym.:mask::worried:


    The statement Suzy was referring to was naive. It's a point of fact really. Any 'tone' is implied by the reader. The word that best fits what she was trying to say is 'naive'.

    And I think it's best not to have enemies anywhere. As adults we should be able to have a frank discussion without considering each other enemies.

    I would be happy to get advice and input from someone as sharp and knowledgeable as Suzy.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    The Truth is Not Defamatory; Shout the Truth of ME/CFIDS from the Rooftops!

    @ MEAgenda-
    What was my inaccurate post on another thread? I certainly want to be accurate.

    Everyone-
    I agree that there are different valid ways of conducting advocacy. Lots of people taking a couple of minutes to send out a quick unresearched note can be very valuable. As can having well cited letters on different topics which we can post on this site for others to use. There is a dearth of the latter, so getting those out would be very valuable.

    Malcolm Hooper's Magical Medicine is amazing and is well cited. It could certainly be used as our only source IMO.

    We certainly want to be accurate. The truth is on our side and we gain credibility by being accurate. That said, I think there is generally too much caution expressed by organizations like CAA and some advocates that we don't want to libel/ defame. Wessely and his crew are defamers. They make totally unsupported statements like that there is "no pathology" in ME and it's been proven that exercise can't make us worse, etc. in scientific journals. This is outrageous.

    On the other hand, someone like me stating that he is a scumbag as i like to do, is not defamatory since it is an opinion (in this case well-founded, IMO). Stating that he intentionally abuses the disabled, as i do, may be viewed as more borderline, but in the end not defamation since there is very good evidence for this position. We cannot see in his head, but the circumstantial evidence speaks for itself (Res Ipsa Loquitor).
    Anyway, we would not be sued as this takes resources and he would never recover anything (ME patients don't have deep pockets).

    Just tell the truth as you see it; neither hedge nor exaggerate. The truth as I see it is we are being systematically abused by those who have a solemn obligation to help us- medical doctors and our national governments. These truths must be shouted from the rooftops for progress to be made. We will be vindicated in the end; the more and louder we speak the truth, the quicker this day will come for us and the millions of our brothers and sisters who suffer tremendously every day.
  5. julius

    julius Watchoo lookin' at?

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    Yes, my response was my own lame attempt at a joke. I even used smileys...well, ok they weren't smiling. they were hiding from the mob of angry Canadians who hate me for not loving hockey.

    One of our favorite Canadian bands, The Tragically Hip has a lyric

    "You said you didn't give a f*ck about hockey
    And I never saw someone say that before"


    Says it all.


    I don't disagree with the rest of what you said. But I still think Suzy was correct in her assessment of Flex's strategy. Not to say the whole thing should go in the toilet, just on the one specific comment.
  6. jace

    jace Off the fence

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    Suzy meagenda works so hard and brilliantly on our behalf, I'm sure everyone will agree. Exactly because of her tireless and professional work, I am not surprised that she may get impatient with the perceived 'naivity' of (what i believe is) the early stages of this excellent project.

    It is true that there is enough fully referenced damning information about Simon Wessley in (my hero xxx) Prof. Hooper's Magical Medicine PDF. The link is halfway down the page

    I think we are all on the same side here, just wanting a way to be well, and trying to get over the clods that stand in the way of that. Sometimes I know I need heads ups from others about the direction I'm taking in my own work: flex has done a brilliant job, he was just asking for ideas and (kind) criticisms and collaborations by posting here.

    I want to thank both suzy and flex for their different contributions to the (eventual) solution which benefits all of us.

    Vive la differance! xx
  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Justin, I think you have misread what I have written.

    I have written:

    Valia has cautioned against reiteration of inaccuracies.
    Justinreilly has cautioned against reiteration of inaccuracies.


    Suzy
  8. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    @ Flex


    Media

    At this URL, you will find a list of the organisations, institutions and media to which the 442 page document has been sent:

    http://www.meactionuk.org.uk/email-addresses-for-magical-medicine-distribution.htm

    You might want to monitor ME Action UK site for any responses.


    Kew Archives

    Your letter makes reference to the issue of the lengthy disclosure notice on certain files archived at Kew.

    If you go to these three URLs, scroll each page for content and then open all the links under Context on each of the three parent pages, and their child pages, there is information about the nature of some of the material archived:

    http://www.nationalarchives.gov.uk/...69707&CATLN=6&Highlight=&FullDetails=True&j=1

    http://www.nationalarchives.gov.uk/...98595&CATLN=6&Highlight=&FullDetails=True&j=1

    http://www.nationalarchives.gov.uk/...75665&CATLN=7&Highlight=&FullDetails=True&j=1


    In this ME agenda posting:

    http://meagenda.wordpress.com/2009/...-services-development-unit-national-archives/

    or here: http://wp.me/p5foE-2yP

    You will find the response from the Public Services Development Unit, National Archives, 22 December 2009 to a Freedom of Information request, submitted by a member of the public in relation to the file in question, who requested that their name and contact details were redacted from the National Archives' response before publication on my site.


    Recent government response

    Here is the recent government response from the Office of the Prime Minister to a No 10 e-petition which references Professor Peter White and Professor Simon Wessely, NICE, MRC.

    http://www.number10.gov.uk/Page22366

    or here on ME agenda site: http://wp.me/p5foE-2Ld

    Last week (23 February) Annette Brooke, LibDem Mid Dorset and North Poole, spoke in an Adjournment Debate on "Myalgic encephalopathy".

    Full Hansard transcript here: http://wp.me/p5foE-2Oz

    at Column 276 at 10.35 pm Minister of State for the Department of Health (Gillian Merron) responds with reference to NICE, PACE, CBT/GET, MRC, MRC CFS/ME Expert Panel November 08 Workshop, commissioning of services, XMRV.


    Media coverage of ME and CFS issues

    Because of public interest in, and media coverage of the Kay Gilderdale trial and because of the coverage of XMRV studies since October, there has been a marked increase in media coverage of ME and CFS much of which has been archived on my site and on these forums. This material will give insight into which publications within the UK might be receptive to your concerns and which may not.


    Prof Wessely and the Science Media Centre

    I have already mentioned that Professor Simon Wessely is an advisor to the Science Media Centre - but I will give the link again:

    http://www.sciencemediacentre.org/pages/about/sap.htm

    http://www.sciencemediacentre.org/pages/about/

    I hope these links may be of interest to you.

    Suzy
  9. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Justin wrote:


    Could we acknowledge please that not all ME advocates are patients. Advocates may be parents of children and young people with ME, or relatives or partners of ME patients. I am not a patient.

    Responding generally, and not with reference to any specific issue arising out of this thread, it should be noted that Margaret Williams has reported that in 1989, the publishers of Dr Anne Macintyre's book "ME‐PVFS: how to live with it" were compelled to remove a section of the book in response to a threat of injunction.

    The Director of the organisation formerly operating as Westcare UK (subsumed by Action for M.E. in 2002) was also reported by Marshall and Williams as having had a similar experience with material intended for publication in a report. [1]

    Within the last few months, Professor Wessely has requested removal of material from Co-Cure mailing list. This necessitated its removal from all other sites where this material had been republished, including Cort's forums and also from my own site.

    (This issue resulted out of a misunderstanding over the obtaining of permission to publish a private communication from Prof Wessely and did not revolve around content written about him but it does illustrate that Professor Wessely monitors Co-Cure mailing list and other sites and will contact those who circulate or faciliate the circulation of material.)

    Prof Wessely also collects examples of internet material for use in his slide presentations at the lectures, meetings and conference presentations he gives to members of the medical profession, professional bodies and academics.

    A PowerPoint presentation from 2008 includes a couple of screen shots of Yahoo! Group Home Pages. In a screen shot dating from 2003, the former List owner, displaying a serious lack of judgement, had published a photograph of Prof Wessely and invited members of his Yahoo! Group to participate in a poll. The photograph, text and poll were taken down following complaints:

    http://health.dir.groups.yahoo.com/group/MEND-UK/

    Wessely PowerPoint

    See Slide #75: http://www.lse.ac.uk/collections/BIOS/pdf/rcts/Wessely.pdf


    What one is prepared to publish in relation to any issue or individual will depend on personal circumstances, location, the availability and strength of supportive documentary evidence and one's own code of conduct when publishing on the internet or by other means and whether one is working under the cloak of anonymity.

    Again, speaking generally and without reference to any specific issue arising out of this thread what I have not done is caution against speaking out against evidence of injustice, dishonesty, malpractice, negligence, duty of care etc from whatever quarter we perceive this to be originating, only that due care is taken, and that care is also taken not to leave ourselves wide open to criticism from the medical profession, government agencies and the media that we cannot get our facts right, and I do not think that is an unreasonable expectation and one which you appear to share.

    [1] To set the record straight about Ean Proctor from the Isle of Man By Eileen Marshall and Margaret Williams, 20th July 2005 and other Hooper/Williams documents.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    @MEAgenda-
    Sorry I misunderstood you. Thank you for advocating for us even though you do not have ME! I wish we had many more like you.

    It was good to see that an MP is taking this seriously. Thanks for posting the video.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Wessley Says Patient Charities are "Behaving Badly" by Warning of Dangers of Exercise

    That powerpoint was interesting. Wessely says patient charities are "Behaving Badly" (his words) by warning of the potential adverse effects of exercise. He implies that the evidence for the effectiveness of his CBT and GET are airtight: "Game, Set, Match" and the results of the patient surveys showing a third of patients having adverse reactions to his GET are totally invalid (because the survey was not randomized). Unbelievable.
  12. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Response from Professor Sir Michael Rawlins, Chairman, NICE

    Response from Professor Sir Michael Rawlins FMedSci

    [Paper letter scanned to image file]


    http://www.meactionuk.org.uk/Rawlins-response-to-MM.jpg

    NHS
    National Institute for Health and Clinical Excellence

    MidCity Place
    71 High Holborn
    London
    WC1V 6NA

    Tel: 0845 003 7780
    Fax: 0845 003 7784

    Email: nice@nice.org.uk
    www.nice.org.uk


    Professor Malcolm Hooper
    2, Nursery Close
    Sunderland SR3 1PA

    02 March 2010


    Dear Malcolm

    Thank you for your letter and for enclosing Magical Medicine: How to Make
    Disease Disappear.

    You are obviously aware that NICE has, in the recent past, been involved in
    defending an action for Judicial Review over the ME/CFS guideline we
    published a couple of years ago. Although judge found in favour of the
    Institute the legal costs were considerable. I am afraid, therefore, that I am
    not prepared to enter into any correspondence on this matter.

    I am returning your document.

    Yours sincerely

    Professor Sir Michael Rawlins FMedSci

    Chairman

    ------------------------
  13. maryb

    maryb iherb code TAK122

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    No surprises there then, don't think we were expecting anything else. Thank you for posting it Suzy, our champion always on the ball.
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    @ Flex

    I am concerned about the reliability of the source given for this statement in your draft letter:


    This document:

    101 Good Reasons : Why it is wrong to provide CBT and GET to ME Patients.


    by Greg Crowhurst, 2nd March 2010, includes the following text at point 23:

    23.
    Professor Malcolm Hooper


    (CBT, GET) :

    (i) is not remotely curative;

    (ii)modest gains may be transient and even illusory;

    (iii) these interventions are not the answer to ME/CFS;

    (iv)patients have a tendency to relapse; and

    (v)evidence from randomised trials bears no guarantee for treatment
    success

    ref: www.meactionuk.org.uk/Concerns_re_NICE_Draft.pdf ).
    For a detailed review of Wessely School indoctrination of State
    agencies, and the impact of this on social and welfare policy, see
    www.meactionuk.org.uk/Proof_Positive.htm .
    Evidence submitted by Professor Malcolm Hooper (NICE 07)
    http://www.publications.parliament.uk/pa/cm200607/cmselect/cmhealth/503/503we79.htm

    -----------------

    If you follow up the source www.meactionuk.org.uk/Concerns_re_NICE_Draft.pdf

    it is a 19 October 2006 document by Margaret Williams.

    The reference source for the statement:

    (i) is not remotely curative;

    appears to be

    Page 28, paragraph 5:

    What you have attributed to NICE, appears to be a quote from a 2001 editorial by Professor Simon Wessely referenced in a 2006 document authored by Margaret Williams as the Nominated Respondent for the 25% ME Group's submission in the NICE Guideline draft consultation process and not a statement made by NICE, themselves.

    I hope you won't mind my pointing this out.

    Given that these are public archives and the posts are listed on Google and given that not all readers may read this entire thread could I suggest that an edit is included on Post #1 which corrects this misattribution, please?

    Suzy

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