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LETTER, Re: The M.E. "death threats" story (sent 4 August 2011)

Discussion in 'Action Alerts and Advocacy' started by drjohn, Aug 9, 2011.

  1. drjohn

    drjohn Senior Member

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    PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS

    We are currently drafting an open letter, to be co-signed by representatives of people with M.E. (Myalgic Encephalomyelitis), which will be sent to all media, especially those who covered the M.E. "death threats" story (first in the British Medical Journal, 22 June 2011 and then following the BBC Radio 4 "Today" programme, 29 July 2011), It will be a request for journalists to revisit it with a list of crucial unanswered questions, which may substantially alter public perception and suggest a completely different priority for future research. In advance, may I attempt a summary of two quite diametrically opposed views, which I hope will not be too oversimplified and sufficient to provide a fair understanding of the roots of this furore.

    It has been an unseemly bar room brawl of flailing fists, since the first punches were thrown around 25 years ago because there are not merely two simple arguments, or adversaries but factions within factions and anarchic loose canons. At the risk of taking some more bruising, from all sides, which we condemn as both unpleasant and unhelpful to all, I shall attempt a summary:

    Professor Simon Wessely and those of his school of thought and practice, appear to be saying that people, they have bundled together, with CFS/ME are being hostile to those researchers and practitioners, who are trying to help them; they should accept that there isn't necessarily a physical cause of their illness; their behaviour is likely to drive researchers away from the filed, they should take the orthodox treatments of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) and consider alternative and unproven radical treatments such as the Lightning Process.

    Representatives of the M.E. Community say that the foundations of their work are fundamentally flawed because M.E. is a discrete neurological illness and, logically, cannot be the same as the CFS bundle of heterogeneous illnesses; therefore, any research work using these polluted samples, is invalid and unreliable; any conclusions should not be extrapolated to M.E. sufferers, who were probably not included in the trials; researchers are not independent while pharmaceutical and insurance companies fund their work; there is no evidence of researchers refusing grants to work elsewhere or remain unemployed; the recommended treatments they feel pressured to take are ineffective, or make a majority worse, the number remaining ill for decades has not been reduced and this monopoly accepted by successive governments, is impeding progress towards a cure not only for people with M.E. but other illnesses in the bundle.

    I hope this right of reply will not be ignored or swept under the carpet but then, at a later stage, the same slur repeated on a majority of M.E. Sufferers who should not be tarred with one brush and as though no attempt had been made to establish a proper foundation for research into this dreadfully disabling illness.

    Yours sincerely
    drjohngreensmith@mecommunitytrust.org
    Dr John H Greensmith
    ME Community Trust.org
     
  2. gregf

    gregf Senior Member

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    para 3
    away from the field... ? :angel:
     
  3. Enid

    Enid Senior Member

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    Yes I quite agree - it has become an unseemly bar room brawl - the tactics employed by the Wessely school to enforce his/their view. Thanks drjohn for your letter.
     
  4. drjohn

    drjohn Senior Member

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    Sorry about slip ups

    Sorry about the slip ups in the text of one of my recent postings. Fellow sufferers will probably realise that it is not only a constant problem with M.E. to keep up concentration but it has been compounded by my being dog tired from writing so much recently. There is an even bigger drain on my energy, which is that it takes sometimes as much as 10 times the effort of writing the original letter to get it around all the different groups, forums and social networking sites, which all have different rules to obey - for someone to then tell you that you've missed a comma, or split an infinitive, which they have time to notice because they haven't used their time and energy to write anything at all. I get many more compliments or hugs than kicks but I don't need a single kick, thank you, unless you have something to offer as well. Shortly, I shall announce how you will be able to get my work - or leave it - if you want to. Bear with me just a little longer. Best wishes John.
     
  5. ukxmrv

    ukxmrv Senior Member

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    John, you do a great job!

    Please ignore any nitpicking! They should be ashamed.
     
  6. Sasha

    Sasha Fine, thank you

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    Sorry to hear about that, John - they are probably trying to be helpful in offering up some copy-editing but it can feel like being on the receiving end of nitpicking! Good for you for doing this project.
     
  7. Nielk

    Nielk

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  8. biophile

    biophile Places I'd rather be.

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    On the lighter side, it occurred to me a while ago that actual pub brawls would in most situations be considered "safe" under the PACE threshold of a "severe adverse event".
     
  9. gregf

    gregf Senior Member

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    DrJohn,

    I thought the letter was great ; there was nothing to fault with it. I just thought I could help by mentioning a small typo.

    Greg :(
     
  10. SilverbladeTE

    SilverbladeTE Senior Member

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    It's a nice try, but the media is mostly, hype-driven dumbass rabble rousers, nowadays :/
    Personally, I think Wessely stirred things up too much for himself by doing this, it iwll backfire: he's made plenty of rope to hang himself with his public statments (*)
    And so, when he did that interview,in the long term, it will be one of the "Big events" that will get him publicly crucified and villified as one of, if not the worst monsters in medical history (*)


    (*) these are not death threats, they are prosaic and well know terms reffering not to literal violence! :p
     
  11. Nielk

    Nielk

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    I agree with you Silverblade. Wessley did what none of us could do. He showed his true colors of being a lunatic crybaby who blames all his ills on a population of severely sick patients. I think he has become a laughing stock.
    We will soon see his downfall into oblivion.
    He should still pay for his crimes that have adversly affected so many people while at the same time because of him there have not been any medial advances into M.E. in the U.K. How do you quantify this damage?
     
  12. taniaaust1

    taniaaust1 Senior Member

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    Dr John.. gregs a nice person and I know only pointed it out to help with the draft, the mistake wasnt pointed out as an attack.

    Thanks for doing all you do. You've done so much for the ME community. Thanks :)
     
  13. taniaaust1

    taniaaust1 Senior Member

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    Im wondering if the CAA will be co-signing drjohns letter?
    ......

    Take care Nielk. For saying that he should pay for his crimes... makes you are another who is out to get him, wanting him in oblivion. He must be so scared of you now hahaha
     

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