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UK London Barts CFS Clinic "Celebration Protest" Monday 29th November

Discussion in 'Action Alerts and Advocacy' started by ukxmrv, Nov 26, 2010.

  1. ukxmrv

    ukxmrv Senior Member

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    Just been sent this message

    *******NEWSFLASH*********

    I have just heard from Barts that they will agree to a protest on their grounds for the 29th November (Monday). Please contact me if interested in attending.

    Annette Barclay contact@notsonice4me.co.uk

    ++++++++

    Barts in London is a NHS Hospital that has a clinic claiming to treat CFS/CFS. They use CBT and GET. One of the Clinical Leads at this hospital is Prof Peter White who is a champion of psychological treatment for ME.

    On the 29th Nov Barts will be hosting a celebration to mark 25 years of "treating ME". Speakers will include Prof Simon Wessely.

    See also

    http://www.notsonice4me.co.uk/BARTS_PROTEST.htm

    and

    http://www.facebook.com/#!/event.php?eid=156600244382628
  2. CBS

    CBS Senior Member

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    Journal of the Royal Society of Medicine Short Reports - Peter White

    If you're going tp spend Monday protesting then you'll probably want to see this (shows a publication date pf 9/6 but is just showing up today in pubmed):

    Psychiatric misdiagnoses in patients with chronic fatigue syndrome.
    Lawn T, Kumar B, Knight B, Sharpe M, White PD.
    East London Foundation Trust , St Bartholomew's Hospital , London EC1A 7BE , UK.

    Journal of the Royal Society of Medicine Short Reports (JRSM) Short Rep. 2010 Sep 6;1(4):28.
    Abstract

    OBJECTIVES: The aim of this study was to examine the accuracy of doctors at diagnosing co-morbid psychiatric disorders in patients with chronic fatigue syndrome (CFS).

    DESIGN: Case series comparing clinical diagnoses with a standardized structured psychiatric interview.

    SETTING: Secondary care specialist chronic fatigue syndrome clinic.

    PARTICIPANTS:
    One hundred and thirty-five participants of a randomized controlled trial of non-pharmacological treatments at one centre in the PACE trial.

    MAIN OUTCOME MEASURES: Current psychiatric diagnoses made by CFS specialist doctors, compared with current psychiatric diagnoses made independently using a structured psychiatric interview.

    RESULTS: Clinicians identified 59 (44%, 95% CI 39-56%) of patients as suffering from a co-morbid psychiatric disorder compared to 76 (56%, CI 53-69%) by structured interview. Depressive and anxiety disorders were most common. Clinicians were twice as likely to miss diagnoses (30 patients, 22%) than misdiagnose them (13, 10%). Psychiatrists were less likely to miss diagnoses than other clinicians, but were as likely to misdiagnose them.

    CONCLUSIONS:
    Doctors assessing patients in a chronic fatigue syndrome clinic miss psychiatric diagnoses more often than misdiagnosing them. Missed diagnoses are common. CFS clinic doctors should be trained to diagnose psychiatric disorders.
  3. Mark

    Mark Acting CEO

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    Sickening, this is just about the only date currently in my diary that I can't make!

    I'll be with you in spirit..."celebrating 25 years of treating ME" indeed! Dancing on graves, innit?
  4. Enid

    Enid Senior Member

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    I think we are waiting on the marvellous research and findings US wise (not to exclude Kenny deMeileir) before our UK self congratulatory blinded idiots in the form of psychiatrics will learn anything.
  5. Min

    Min Senior Member

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    Great idea - I'm housebound but have sent a card or two.
  6. maryb

    maryb iherb code TAK122

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    Have got 2 letters ready to fax tomorrow or on Monday- one to Peter White and the other to the Trust. Thanks to the organisers for the templates.
  7. ukxmrv

    ukxmrv Senior Member

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  8. ukxmrv

    ukxmrv Senior Member

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    Just noticed on the Facebook page. Someone coming from Chester to London is offering seats in a minibus. They can also collect people from (roughly) north and central London on their way to Barts.
  9. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    My polite letter to Barts & the London Hospital, ME/CFS clinic Execs, doctors and Admins etc:


    NOT for reposting
    ==========

    Dear All,

    Re: 25th Anniversary Celebrations of ME/CFS Specialist clinic -

    Although one is usually delighted to hear of a major London teaching hospital celebrating the 25th anniversary of a specialist clinic for a severe medical condition, I am not entirely sure in real terms what progress is actually being celebrated on behalf of ME/CFS patients in the UK today?

    Of course it has been disappointing to discover that CBT and GET have not been the substantial game changers researchers and patients might have hoped for, especially considering the ample funding deployed in this direction, and discouraging at best to hear/read of patient reports of health deterioration as a result of GET specifically. I expect many were hoping to be well enough to return to work after such a programme. This has sadly not been the case for the majority.

    And so, at what point does one consider that an avenue of research has been adequately explored and yet not produced the desired returns? At what point do patient reports of 'no thanks, its really not working, let's try something else' encourage a time of scientific reflection and a change of direction? When patients almost universally resist a particular line of treatment, I wonder what the important 'take home' message might be?

    I am delighted to hear (via Dr Shepherd and the MEA) that Professor White, for eg, is part of a forward thinking MRC ME/CFS Research panel which is currently considering proposals for funding novel Biomedical research across a range of medical disciplines. This makes great sense when considering that ME/CFS is a disorder affecting neurological, immune and hormonal pathways.

    In scientific terms, and in terms of engineering real, measurable and fundamental change in patient health for the better, focused and sustained biomedical investigation is likely to be the major pathway by which scientists can take this field forward in the 21st Century and make substantial inroads into discovering causation and treatment of this complex condition.

    Now that sounds like a cause for celebration!

    best wishes,
    .....................

    As I say, it is a polite letter ... :headache:
  10. Esther12

    Esther12 Senior Member

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    Hope it went well.
  11. ukxmrv

    ukxmrv Senior Member

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    I have permission to repost this from the organiser

    (start)

    Hi all,

    I'm back from the Barts protest and it's taking time to thaw out.

    My thanks to the amazing people (around 9 or 10?) who managed to get there and stay for a few hours under the freezing conditions.

    Thanks as well to everyone who worked to make this a success. I'm told that the faxes kept rolling into Barts today. Great effort on the remote protest everyone!

    I'd like to say a special thank you to "J" who put together handouts (ME information packs) to give to the medical people at the "celebration". They looked very professional and were well received.

    People today did a tremendous job of making sure that no one left the hall without being offered one of the information packs - more often than not they took one.

    Very sorry to have missed "L" who arrived at the end but we had succumbed to the cold and gone for hot soup.

    I'm not sure who wants to be mentioned by name so I'll stop now.
    Kindest regards,
    Annette
    (end)
  12. Min

    Min Senior Member

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    That's a great letter pictureofhealth, well done

    thanks Annette, the 10 brave people did a great job, they must have been frozen
  13. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Thanks Min though not sure they'll read it! It felt good to take a stand - albeit a small one.

    btw I couldn't get some of the suggested email addresses on the Barts protest site to work and the emails to the x2 administrators bounced back.
    I followed the instructions and I checked every last letter of the spellings on each one as the 'bartsandthelondon' etc email address is ridiculously long and I was certain I would mistype something. (Typical of NHS beaurocrats - why use just 5 letters for an email address, when you can use 25?! eg 'BartsandtheLondonHospital' could have been shortened to 'bathl' - think BBC!)

    Anyway, thank you to the protest organisers for providing details & making it much easier to send a letter/email/fax and to those intrepid people who actually made it to the campus yesterday - well done!!!
  14. ukxmrv

    ukxmrv Senior Member

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  15. Marty

    Marty Senior Member

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    Consequences

    You are heroes because you gave the Bart's doctors and staff a consequence of their actions: you succeeded in embarrassing them. They have already received hundreds of thousands of letters and shown that they refuse to "do the right thing". With much less work, you made them uncomfortable, and that gets their attention. I think that should be the goal of any advocacy - cause them a consequence.

    Thanks from all of us.
  16. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Good video and photos - thank you very much for posting.

    Were those typed lists on the hospital railings the names of all the ME patients who have died? If so, it looked pretty sobering.

    The passersby/conference attendees looked receptive to the handouts.

    A lot of work went into organising this - thank you.
  17. RivkaRivka

    RivkaRivka Senior Member

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    this is nothing short of amazing! we in the U.S. can learn a lot from the UK on how to hold a protest demo. the video is amazing. thank you, annette, for all yr amazing work!!!!!

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