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British Association for Chronic Fatigue Syndrome/ME (BACME) - anyone know anything?

Discussion in 'General ME/CFS News' started by Dolphin, Nov 22, 2009.

  1. creekfeet

    creekfeet Sockfeet

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    bananaman, that's excellent. It's exciting to see local and regional associations insist that something possible big not be allowed to just slip by.
     
  2. justinreilly

    justinreilly Senior Member

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    NYC (& RI)
  3. justinreilly

    justinreilly Senior Member

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    BAPOAEMECASKBACME.com is still available!

    Our new org to fight BACME could be:

    the British Association of Patients and other Actual Experts on ME/CFIDS against the sham known as the British Association for Chronic Fatigue Syndrome/ME

    Kinda snappy, huh?

    luckily, BAPOAEMECASKBACME.com is still available.
     
  4. Dolphin

    Dolphin Senior Member

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    :Retro smile:
    One could set up a blog for free.
     
  5. ukxmrv

    ukxmrv Senior Member

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    I think that the head of BACME (spit) is Dr Esther Crawley?

    Just to get a flavour of her ideas on XMRV (for example) there is a discussion in the WPI facebook page of a recent talk by her.

    It's under WPI on facebook, Discussions, What we are up against.

    http://www.facebook.com/topic.php?uid=154801179671&topic=12698
     
  6. Daisymay

    Daisymay Senior Member

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    Thanks XMRV, well I suppose I shoudn't be surprised to read what Crawley said in that Dorset group talk but I kind of am, it is all so utterly blatantly awful and so shocking that an ME group would let it happen!
     
  7. Jenny

    Jenny Senior Member

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    QUESTIONS RAISED OVER THE TRAINING ROLE OF A NEW BODY FOR ME/CFS PROFESSIONALS

    The following statement was issued by the West Midlands ME Groups Consortium (WMMEG), which is to be sent to the All Party Parliamentary Group for ME:

    WMMEG call upon the British Association for CFS/ME (BACME) to re-write their constitution and to urgently address the issue of balance, content and appropriateness of their education and training programmes for UK healthcare professionals.


    WMMEG (West Midlands ME Groups Consortium)

    Apparently there is more on this on the ME Association's website.

    Jenny
     
  8. helsbells

    helsbells Senior Member

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    They really just won't go away will they!! Like the terminator only the bad ones! Thanks re the elucidation re the term astroturfing though - sorry too far back now to thank the actual elucidator but I can now overuse the term with venom :D
     
  9. Dolphin

    Dolphin Senior Member

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    Their conference is this week. If anyone hears anything, we'd all be interested (I imagine).
     
  10. Enid

    Enid Senior Member

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    If that lot - BACME - is British then I am not. Big name substance lacking. On the other hand the growing support for the WMMEG by increasing numbers of countrywide local support groups spells out the difference.
     
  11. worldbackwards

    worldbackwards A unique snowflake

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    BACME and Sussex and Kent ME/CFS Society: a marriage made in heaven

     
    Last edited: Nov 22, 2016
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  12. Wildcat

    Wildcat Senior Member

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    Esther Crawley and Dr Alistair Miller are current Medical Advisors to the Sussex and Kent MCFS Society One big happy family.:


    http://measussex.org.uk/about-us/medical-advisors/


    Professor Esther Crawley
    Dr Esther Crawley, is a Reader in Child Health at the University of Bristol and a Consultant Paediatrician with a special interest in CFS/ME. She is the clinical lead for Bath specialist CFS/ME service for children based at the Royal National Hospital for Rheumatic Diseases in Bath which currently provides assessment and treatment for over 200 children and young people per annum.
    Dr Crawley completed her medical training in Oxford, and then worked in Birmingham and Liverpool before doing her PhD at University College London and Great Ormond Street Hospital. Esther then moved to Bristol and Bath and set up the paediatric CFS/ME service.

    Dr Crawley is a medical advisor to the Association of young people with ME, was Chair of the British Association for CFS/ME (BACME, 2007-2010). She set up the Royal College of Paediatrics and Child Health special interest group for CFS/ME, was on the guideline development group for the NICE guidelines published in August 2007 and the MRC CFS/ME expert working group (2009-2010).


    Dr Alastair Miller
    Alastair Miller was a Consultant Physician in the Tropical & Infectious Disease Unit at the Royal Liverpool University Hospital and an Honorary Fellow at the Liverpool School of Tropical Medicine 2005 until May 2014. He remains an Honorary Senior Lecturer at The Institute of Infection and Global Health at Liverpool University. Prior to Liverpool he was a Consultant in the West Midlands and Honorary Senior Lecturer in Infectious Disease at Birmingham University. His main clinical interests are blood borne viruses, bone and joint infection and chronic fatigue syndrome/ME.
    He has been involved clinically with ME/CFS since his time as a registrar in the mid 1980s. In the Navy he was the lead clinician and in Worcestershire he established a multidisciplinary team for CFS management. Since arriving in Merseyside he became the clinical lead for CFS and ran a diagnostic clinic and a therapy service in collaboration with therapy and psychology colleagues. He is Chair of the British Association for Chronic Fatigue Syndrome and ME (BACME) and Principal Medical Advisor for Action for ME (AfME).


    ~~~~~~~~~~~~~~~~


    NOTE - Dr Alistair Miller is former Medical Advisor to AFME and former Chair Of BACME.
    .
     
    Last edited: Nov 29, 2016
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  13. Esther12

    Esther12 Senior Member

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    Wildcat, Valentijn and Snow Leopard like this.
  14. Henry A

    Henry A

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    BACME also produced a guide for "healthcare professionals" in August last year overseen by the then chairman Alastair Miller. It was pretty much what you would expect, CBT etc. As I remember it was made available as a PDF and promoted, perhaps inevitably, byAction for ME before they redid their website a couple of months later.

    http://www.meassociation.org.uk/201...and-management-guide-for-cfsme-4-august-2015/

    Sorry if this duplicates what anyone else has said or I've posted in the wrong place. I'm trying to get the hang of things (usually I'm on Twitter!)
     
  15. worldbackwards

    worldbackwards A unique snowflake

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    There is a thread knocking about for it somewhere or other. I seem to remember that, all that aside, it could have been worse.

    Welcome Henry A. I'm usually here!
     
    JohnM and Henry A like this.
  16. slysaint

    slysaint Senior Member

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    Henry A likes this.

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