1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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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 Wessley replies

Discussion in 'General ME/CFS News' started by maryb, Dec 12, 2012.

  1. maryb

    maryb iherb code TAK122

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    From SW 12 Dec 2012
    and the Countess replies:

    Dear Lady Mar

    May I ask, genuinely respectfully, am I writing to you, or am I writing to all the internet?
    When you wrote to me, you said it was an “open letter”, and indeed, it appeared on the internet as you sent it me

    Personally, I don’t particularly like that way of communicating. If I write to a newspaper, or have a paper in a journal, then clearly that is public. But if I write to a private individual, then that is private, unless I indicate otherwise (as you did in your letter to me) or the other person asks for permission to repost, I think the word is.

    So if we are to pursue this, can I first of all establish what is the basis of our correspondence. Is it private, or is it public? I can cope with either, but I think it’s only fair to both of us to establish which it is.

    Simon Wessely


    From: MAR, Countess
    Sent: 12 December 2012 17:12
    To: 'Wessely, Simon'
    Subject: RE: My letter of 5 December 2012

    Dear Professor Wessely

    Thank you for responding to my letter of 12 December 2012.

    As this correspondence began with an open letter I believe that it should continue as such. Unless you can give very good reasons why it should not, I can see no reason why your private response should be any different from your public response. Your answer to my question should be the same to whomever you reply.

    Much of this debate has been conducted in the public arena, but a public arena from which people with ME/CFS are largely excluded. I am sure that you are aware that they do not have the same access to press, radio and television as you do. As we are concerned with their health, they should be privy to your honest opinion. Do you still believe that ME/CFS is “perpetuated predominantly by dysfunctional beliefs and coping behaviours”?

    I still look forward to your reply.

    Yours sincerely
    Mar
    golden, beaker, Allyson and 10 others like this.
  2. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    *CHING! CLANG!*
    ah, I love the sound of clashing words in the morning, it smells like...victory! :alien:

    Kati likes this.
  3. Valentijn

    Valentijn Activity Level: 3

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    ... or if your letter to a member of a government agency becomes public via an FOI request :cool:
    justy likes this.
  4. Enid

    Enid Senior Member

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    As far as I'm concerned this is PUBLIC. Following the diabolical "media" onslaught implying all ME sufferers are violent, abusive, probably psychotic (must look up the SW et al gems of ignorance) - we are publically condemmed, we now publicly want retraction for the decades of misrepresentation of Myalgic Encephalomyalitis (seemingly others too) by the persuasive slippery ignorants of science - psychiatrics UK.
    beaker, Bob, Allyson and 7 others like this.
  5. Stukindawski

    Stukindawski

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    Looks like a fresh opportunity for a sideshow before the inevitable regurgitation of PACE PR and 'evidenced-based' diatribe.

    Although I imagine Lady Mar must be anticipating as much.
    beaker, Min and taniaaust1 like this.
  6. snowathlete

    snowathlete

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    Lady Mar is absolutely right. His response should be the same regardless. He has been asked a simple and clear question and should provide a simple and clear answer, whatever his view.

    It would be one thing, perhaps, to state that he doesn’t wish to give a public answer. But he says he is happy to do so. That being the case, the only other reason to care if it is public is if you would give a different answer in those circumstances, and I think it is very disingenuous of anyone to give one opinion in private and another in public.
    beaker, Allyson, leela and 8 others like this.
  7. alex3619

    alex3619 Senior Member

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    Yes Stukindawski, in March 2011 Lady Mar would have had very little capacity to respond as nobody really understood the PACE findings. Now, however, we understand much more. She is probably well prepared.
    beaker, Allyson and Valentijn like this.
  8. taniaaust1

    taniaaust1 Senior Member

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    esp since he's just being asked one question and all that is needed is a simple yes or not. Does he believe that or not?

    I think not only will we get some kind of wishy washy response (we wont get a "yes" or "no" answer) but also he knows that if it is going to be put publically .. unfortunately for us its another media exposure for him to go and sprout his views and he certainly wont be wanting to waste an opportunity to do so, hence he also wants to know if public or not due to that too.

    Lay your bets haha.. I bet he will use the opportunity to spin the PACE trial (seeing that got brought up) in the way he wants it to look, to try to take some of the attention of of the question being asked (thou I think he will answer it but only in a very vague way which could mean anything).

    He couldnt do that thou as that would make him look bad.. hence he has to respond but it wont be in a yes or no as that would leave him and his veiws too open and vulerable.
  9. ukxmrv

    ukxmrv Senior Member

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    As their recent correspondence occured as the result of a letter published in a public newspaper he must be a real thicko to think that subsequent replies would be private.

    Wessley thiink nothing of making public claims about harrassment on the radio and in newspapers, then as if in a paralell universe expects correspondence to be private when someone challenges him....

    Just a way of his escaping an critrical and public apprasial of his actions. He wants everything to be safe and controlled i.e. none of the obvious questions asked and no chance of a patient getting an answer.

    Using the media to spread his own propaganda with no right of reply by the patients or anyone interested in us
    beaker, leela, Merry and 3 others like this.
  10. Kati

    Kati Patient in training

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    his wife is quite ticked off to be mentioned as Simon's wife on Twitter.Tough! Being the prez of GP's AND his wife, she is in conflic of interest and we are all the victims. This has to be kept public. These ties makes it what's been a terrible last 25 years. Her position is perpetuating that with the GP's.

    I say Bravo to Countess of Mar
    beaker, leela, Min and 1 other person like this.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i think even if he answers the question they need to hook him up to a lie detector after being injected with truth serum as well.
    If he cant answer such an easy question in a public forum then its obvious he is anti all the people is says he is trying to help with their illness thats not really there.

    good onya Lady Mar.
    beaker, Allyson, leela and 1 other person like this.
  12. ukxmrv

    ukxmrv Senior Member

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    "Mrs Wessely" has form already on ME and CFS.

    Here she is on a training videos to teach GP's handle ME and CFS patients. In this re-enacted "typcial interview" she counsells a CFS patient who works in a pub at night! and drinks to try and put him to sleep! and does studying/course work in the day! to get to bed at a consistent and regular bed time.

    It's hilarious and worth watching (she is on at about 1:30)



    In particular you will enjoy the bit where he argues against drinking less than 2 pints a night during the week ! (he goes to clubs during the weekend and "Mrs W" quite reasonably allows him to continue the binge drinking then.)
    beaker, justy, taniaaust1 and 2 others like this.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    dont we all drink every night and go to night clubs on the weekend.
    These videos show they have no idea about cfs/me but i have noticed the way the teach avoiding the patient symptoms in other docs here in australia who consider cfs/me a psych condition too.
    I didnt realise that it was Mrs wessel in the video, thats interesting.
    beaker likes this.
  14. Valentijn

    Valentijn Activity Level: 3

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    You're probably right on both counts. But I think that if the media covers it, they're required to show a balanced view from both sides. Since we actually have a "side" representing us this time, I don't think he's got much chance of using this to get his psychobabble published without Lady Mar's critique being included.
  15. maryb

    maryb iherb code TAK122

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    I agree I just knew this would make him squirm, he says a lot in private, garnering support for his theories, whilst publicly placating patients with pats on the head. He is an absolute control freak and this must be the worst situation for him,and all over the world too, I just love it. Thanks for the video, beggars belief doesn't it, they don't even know 90% of ME patients can't tolerate even a drop of alcohol, shows just how far removed from the realisty of this illness they are. Glad its become more public about his wife, we have no hope whilst the GP training on ME is in her hands, got up sewn up nicely between us haven't they?
    Bob, Allyson, leela and 4 others like this.
  16. Firestormm

    Firestormm Guest

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    Probably guilty of spreading propaganda, but sod it. BTW who is Horace Reid (other than a song title from ELO I rather like)?

    allyb, ukxmrv and maryb like this.
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I watched these videos a few years ago and they just made me so mad, the people they are trying to act like arent cfs/me patients, maybe cf from over doing things. When u watch them u realise that all their work they do on people arent people with cfs/me, the video have people who are living full lives, working, studying, drinking and socializing, they are people burning the candle at both ends, not cfs/me. They are just so wrong and their treatments are just so dangerous. They need to put together a class action against SW and his followers for malpractise and cruelty.
    Allyson, Min, ukxmrv and 1 other person like this.
  18. ukxmrv

    ukxmrv Senior Member

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    Horace Reid is a patient from Ireland I think. I remember an article about Mr Reid in a newsapaper that was circulated online. I think that he may have been a nurse before he became ill or another type of medic.
    Firestormm likes this.
  19. justy

    justy Senior Member

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    Shock horror - Hold the Front Page - New Research Suggests people who dont sleep properly FEEL TIRED !!!!
    I have watched these 'training' videos before and unbelievably just made myself go through the excrutiating experience again.

    I dont suppose i really need to say it here but drinking in a pub! Not done that in years, not touched a drop of alcohol in years. Have never regularly slept in the day - have had terrible sleep problems which have been mainly resolved for over a year - now regularly sleep 8 hours a night (although nine is better) I have always kept regular sleeping hours.

    The result: i still have M.E. Still have immune problems, gastric issues, eye prolems, swollen lymph nodes, extreme fatigue on exertion. Still need to use a wheelchair for any walk longer than about 10 minutes. Still havent worked at all in over 4 years and have not been able to hold down a full time job for 20 years.

    These people are seriously deluded.
    Rant over,
    Justy xx
    Whit, Allyson, leela and 2 others like this.
  20. maryb

    maryb iherb code TAK122

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    Justy, ditto ditto ditto, its incredible they've got away with ignoring real ME patients for so long isn't it?
    Min likes this.

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