1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut ...
Discuss the article on the Forums.

BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

Discussion in 'General ME/CFS News' started by Firestormm, Jun 18, 2014.

  1. Min

    Min Senior Member

    Messages:
    1,240
    Likes:
    1,404
    UK
    Nasim Jafry has this rather brilliant RR posted on the BMJ site now:


     
    Leopardtail, vli, zzz and 14 others like this.
  2. chipmunk1

    chipmunk1 Senior Member

    Messages:
    241
    Likes:
    734
    the autor of the BMJ commentary cited this book:

    http://www.zompist.com/memes.html

    The concept itself seems to be quite controversial and mostly speculation.

    http://en.wikipedia.org/wiki/Memetics
     
    Cheshire, Valentijn, Sean and 2 others like this.
  3. Scarecrow

    Scarecrow Senior Member

    Messages:
    221
    Likes:
    478
    Scotland
    The latest RR:

     
    NK17, SOC, Countrygirl and 11 others like this.
  4. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,977
    Cornwall England
    Daisymay, Bob, Dolphin and 2 others like this.
  5. Sasha

    Sasha Fine, thank you

    Messages:
    8,444
    Likes:
    7,529
    UK
    Great to see the charities stepping in with these responses. :thumbsup:
     
    justy, Firestormm, Min and 2 others like this.
  6. kermit frogsquire

    kermit frogsquire *****

    Messages:
    125
    Likes:
    37
    The above rapid response to "Is Chronic Fatigue Syndrome a Meme?" say it all in my opinion.

    http://www.bmj.com/content/329/7472/928?tab=responses

    There are people who want CFS/ME to be this or that, organic, psychological ... yet is it nothing but an artifical construct that is causing torture? Torture from psychiatrists (who inclidentally actually often refuse to diagnose the organically ill as having ME) and torture from "ME specialists" who diagnose everyone with it. Which is worse?
     
  7. Min

    Min Senior Member

    Messages:
    1,240
    Likes:
    1,404
    UK
    What can we as a group or individuals do about the contempt these doctors have shown to the patients they work with please?


    To whom can formal complaints be addressed? Can anyone help with the wording of such a complaint?


    It seems to me that if they had written this about any other neurological illness it would have been taken seriously, the official answer would not have been a form of 'it's OK because they didn't really mean what they wrote'.
     
    Last edited by a moderator: Jun 24, 2014
    Roy S, justy, Keela Too and 4 others like this.
  8. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,515
    Likes:
    9,654
    Amersfoort, Netherlands
    Spread info advocating a complete boycott of the clinic, and maybe organize some picketing out in front?

    Complaining to the clinic wouldn't help, since they're the problems. Would complaining to the hospital they're attached to have an impact?

    Is there some way to get our outrage into the British media?
     
    Last edited by a moderator: Jun 24, 2014
  9. Min

    Min Senior Member

    Messages:
    1,240
    Likes:
    1,404
    UK

    Thank you, perhaps we could join forces and draft a complaint to the hospital that could also go to the health minister?
     
    Countrygirl and justy like this.
  10. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,977
    Cornwall England
    Facebook 22 June 2014: https://www.facebook.com/photo.php?...67.545018383&type=1&theater&notif_t=notify_me
    From the website blog: bit.ly/1pZ7aTW
    Extra spacing added by moi :)
     
    justy, Sasha, rosie26 and 1 other person like this.
  11. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,977
    Cornwall England
     
    Valentijn likes this.
  12. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,515
    Likes:
    9,654
    Amersfoort, Netherlands
    Two new responses to the Meme letter are at http://www.bmj.com/content/329/7472/928?tab=responses

     
    Last edited: Jun 25, 2014
    Bob likes this.
  13. Joss

    Joss

    Messages:
    6
    Likes:
    28
    As someone who attended the Essex CFS Service I think you should have some more info.

    1. The CBT therapist I saw told me she had not trained in CBT.
    2. She argued with me about the classification and said ME is classified as a mental health disorder.
    3. The clinic as a whole refuse to support benefits claims because they say it is a 'conflict of interests' - when I talked to the admin about it she eventually got back to me and said that that had come from Peter White at Barts.I can't think of another service who would refuse to support claims if they thought the patient was too ill to work. They clearly thought that about me because mainly they wanted me to do less.
    4. They fudge their results - I challenged several people I saw about only writing down what I had said when they could construe it to be evidence of the clinics efficacy. I asked the admin later on the phone if the results of end of treatment surveys etc were sent to 'another place' and she said no - I believe this is a lie.
    5. The then consultant physio shouted at me in a very angry way when I questioned the reliability of one of thier forms.
    6. The fact that they say things like 'you should do as much on a bad day as a good one' makes it clear they have no idea what they are dealing with. My baseline for that would be to do nothing ever.
     
    Leopardtail, Sidereal, Sean and 19 others like this.
  14. Cheshire

    Cheshire Senior Member

    Messages:
    158
    Likes:
    415
    France
    o_O

    It's for your own good, benefits are preventing us from recovering. See what Mickael Sharpe says in this Unum document p.21 (guess PW opinion is very similar). http://issuu.com/maxhead/docs/unum_cmo_report_2002


    upload_2014-6-23_18-1-9.png
    So by refusing benefits, insurance companies are not looking to make profits but they are doing an humanitarian action.
     
    Last edited by a moderator: Jun 24, 2014
    Ritto, Min, justy and 1 other person like this.
  15. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    Last edited: Jun 23, 2014
    Bob, Roy S and Sasha like this.
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    Sidereal, Bob, Scarecrow and 7 others like this.
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    http://www.bmj.com/content/329/7472/928/rr/703041

    Suzy Chapman, Carer

    Re: What causes chronic fatigue syndrome?

    23 June 2014

    Collings and Newton (1) resurrect a ten year old editorial (2) to present an essay on the potential for viewing CFS as a 'meme-mediated' syndrome.

    In the Preface to her 1999 book 'The Meme Machine' (3) Susan Blackmore writes that most of the ideas in her book were conceived whilst bedbound for many months with a chronic, debilitating, post-viral illness.

    Forced to give up work, unable to walk, unable to talk for more than a few minutes, unable to use a computer. But she could read and she could think, and as time went on, make notes. It would be two years or so before Ms Blackmore was well enough to consider working again and to develop her ideas into the book.

    Ms Blackmore seems uniquely positioned to contribute to this discussion.

    1 Collings AD, Newton D. Re: What causes chronic fatigue syndrome? BMJ 2014 (18 June).

    2 White PD. What causes chronic fatigue syndrome? BMJ 2004; 329: 928-929 (21 October).

    3 Blackmore, Susan (1999), The Meme Machine, Oxford University Press, ISBN 0-19-850365-2.

    Competing interests: None declared

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

    http://www.bmj.com/content/329/7472/928/rr/703050

    JK Anand
    Retired doctor

    Re: What causes chronic fatigue syndrome? A question for Dr Collings

    23 June 2014

    Dr Collings and colleague (18 June) cite a study suggesting that being ASIAN confers resistance to CFS.

    Are there, even in Asia (arguably starting at the Landstrasse in Wien, girdling half the globe - Turkey, most of Russia, all China, Nippon, Hawaii, Afghanistan, Burma, Thailand, Malaysia, Indonesia........), perhaps, tranquil islands, where dwell, perhaps, Lotus Eaters, who are not labelled with CFS?

    Cultural immunity. Hmm.

    Competing interests: Curiosity
     
  18. Esther12

    Esther12 Senior Member

    Messages:
    5,299
    Likes:
    5,617
    Sorry to hear about that all Joss, but thanks for posting. I really wish I had recordings of my appointments at a CFS clinic, as they seem to be rather more careful with what they put in writing.
     
    Bob, Valentijn and Min like this.
  19. Griffin

    Griffin

    Messages:
    40
    Likes:
    46
    London, UK
    This is part of the problem. Information out there gets used no matter how long ago it was publsihed and without regard to whether it is still accurate, thus becoming a meme in itself.
    ;)
     
    Joss, Firestormm, Min and 1 other person like this.
  20. WillowTree

    WillowTree ME/CFS is NOT fatigue!

    Messages:
    36
    Likes:
    50
    Illinois
    I wonder if this is a last ditch effort to try to defend their position and avoid responsibility for the harm that has been done to patients by trying to make a serious organic neurological disease into a psychiatric one. The truth of myalgic encephalomyelitis will come out as current and future biomedical research is being done. They are on a dying ship. It may take some time, but they are on a dying ship.
     
    mango, justy, rosie26 and 2 others like this.

See more popular forum discussions.

Share This Page