A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
Discuss the article on the Forums.

If your doctor is clueless, direct them to the BMJ's Best Practice Summary for ME

Discussion in 'General ME/CFS News' started by Countrygirl, Oct 27, 2017.

  1. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,169
    Likes:
    16,646
    UK
    For UK people who have a GP who is clueless, and indicates it is all in your head, direct them to the BMJ's Best Practice Summary which was updated this July:


    http://bestpractice.bmj.com/best-practice/monograph/277.html


    EDITED TO ADD LINK TO FULL DOCUMENT:

    https://drive.google.com/file/d/0B57eLIp17Q8MNEtlV2RnSG54N28/view
     
    Last edited: Oct 29, 2017
    Mary, echobravo, Webdog and 24 others like this.
  2. SamanthaJ

    SamanthaJ Senior Member

    Messages:
    219
    Likes:
    1,461
    That's incredible! I kept looking back to check it was really the BMJ.
     
    Webdog, JaimeS, ladycatlover and 6 others like this.
  3. suseq

    suseq

    Messages:
    66
    Likes:
    612
    Thank you for highlighting this. Luckily I have a very supportive GP. However, knowing that the BMJ is acknowledging reality of ME (despite the still muddled conflation with CFS which many reduce to CF) is a helpful revelation and step forward.

    Now need to transform this acknowledgement into increased biomedical research funding and awareness to counter physician/psych beliefs and theories that are misrepresentative and harmful.
     
  4. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,169
    Likes:
    16,646
    UK
    I think IiME had a hand in the new summary.

    However, I couldn't view the management section, so that may still be problematical.


    I found the quote below in the summary to be a welcome improvement though. The BPS mob won't like it.....neither will Esther.:rolleyes::whistle::angel:


     
    Mary, lafarfelue, JaimeS and 9 others like this.
  5. alex3619

    alex3619 Senior Member

    Messages:
    12,521
    Likes:
    35,222
    Logan, Queensland, Australia
    Do be warned that there are sections on CBT and GET. They do mention some of the caveats, and have various cautions, but the scientific irregularities of the PACE trial, which are likely to be in other similar studies. do not receive the attention they deserve.
     
    Dolphin, lafarfelue, JaimeS and 10 others like this.
  6. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,169
    Likes:
    16,646
    UK
    I did suspect this may be so, @alex3619 , but couldn't get access.

    Still, it is a start and it makes it difficult for the doctor to dismiss the patient as being a fruitcake, which is so common in the UK.

    In theory, we are allowed to refuse the CBT/GET nonsense, but it is never as straightforward as that of course.

    We will have to provide our own information sheets for that for which there is ample evidence on this site.
     
    JaimeS, suseq, ladycatlover and 4 others like this.
  7. Sean

    Sean Senior Member

    Messages:
    3,257
    Likes:
    17,985
    Without having read the full text, and also noting Alex's caution, nonetheless I can't see much in the summary for the psychs to be pleased with.

    At the very least they are clearly not front and centre of the show anymore. Which is a big step forward for us, especially considering that it is the BMJ, who have a very sorry record on ME and CFS going back decades.

    Thank you to everybody who helped the BMJ to see the light. :thumbsup:

    Your turn, Lancet.

    You too, Psychological Medicine (the journal that gave us the still unretracted bogus recovery paper, exposed by the hard won data obtained by Alem Matthees via the FOI request).
     
    Mary, PhoenixDown, suseq and 12 others like this.
  8. Daisymay

    Daisymay Senior Member

    Messages:
    738
    Likes:
    4,018
    I agree it think this is a big step forward for us, still many steps to go but progress.
     
    JaimeS, suseq, ladycatlover and 6 others like this.
  9. Jo Best

    Jo Best Senior Member

    Messages:
    1,022
    Likes:
    6,209
    It was on the agenda of the 2016 Biomedical Research into ME Colloquim (#BRMEC6):
    IiME Research commented on Facebook:
     
    Last edited: Oct 27, 2017
  10. alex3619

    alex3619 Senior Member

    Messages:
    12,521
    Likes:
    35,222
    Logan, Queensland, Australia
    Yes, its mostly good but still had to put the CBT and GET in there. I guess there is a good reason for that because these non-treatments are already out there. However it gave the impression there are grounds for thinking both of these work on some patients.

    For example, the graded exercise section has this as a first paragraph -
    (I had to edit as the copy paste function did not work very well, I just added spaces)

    Then there are some caveats such as
    But then they go and say
    .

    However the liberal use of caveats and references to the hard science might substantially mitigate the risk of doctors misinterpreting this text. My guess is that doctors who have not investigated this before will be fine, I am more concerned about doctors who have preconceptions. I am also concerned about just who those knowledgeable professionals might be in the UK, and even in Australia.

    For example, doctors who pay attention to the caveats like not exacerbating symptoms, pacing activity, and avoiding aerobic challenge might come away with a better understanding. However a hardline CBT/GET proponent might argue their approach is permitted under these guidelines.

    Some advice might be very good for some patients as well, I don't want to sound negative, for example
    This is good advice I think, for some, but not just for any skilled professional.
     
    JaimeS, SamanthaJ and NelliePledge like this.
  11. Sean

    Sean Senior Member

    Messages:
    3,257
    Likes:
    17,985
    True. But these guidelines give patients a lot more grounds to decline, and to remind the Dr to first do no harm.
     
    SamanthaJ likes this.
  12. NelliePledge

    NelliePledge plodder

    Messages:
    774
    Likes:
    3,514
    Good shout @Countrygirl i will definitely be asking my GP if she's seen this when I next see her (next couple of weeks as "signed off" my 15 hour a week job currently)

    Has anyone seen the full content I can only access the summary and contents list?
     
    Molly98, SamanthaJ and Countrygirl like this.
  13. alex3619

    alex3619 Senior Member

    Messages:
    12,521
    Likes:
    35,222
    Logan, Queensland, Australia
    Only if the patient is able to argue. Many might not be up to it.

    Its a good guideline overall. I do wonder though to what extent it was modified due to reviewer or editor feedback.
     
  14. wdb

    wdb Senior Member

    Messages:
    1,377
    Likes:
    2,957
    London
    Some excerpts





     
    lafarfelue, ukxmrv and char47 like this.
  15. purrsian

    purrsian Senior Member

    Messages:
    316
    Likes:
    802
    While it gives more grounds to refuse, these caveats still present in the document give welfare organisations like Centrelink a great excuse to still require you to undergo CBT before being "fully treated" and able to get welfare. I have been rejected earlier in the year for not being fully treated due to no CBT and have appealed, but waiting to hear back. Hoping that this change to BMJ will help, but to many caveats that give not only CBT proponents leeway to argue, but also welfare organisations. I understand they don't want to say it flat out DOESN'T work, but it would be nice if they could say it is unlikely given the current theories about the disease, rather than say it might work.
     
    Orla and Sean like this.
  16. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,169
    Likes:
    16,646
    UK
  17. Sean

    Sean Senior Member

    Messages:
    3,257
    Likes:
    17,985
    Point taken. I still have not read the full version.
     
    Countrygirl likes this.

See more popular forum discussions.

Share This Page