Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

BACME's new clinical guide to practical management of M.E. for healthcare professionals

Discussion in 'General ME/CFS News' started by worldbackwards, Aug 4, 2015.

  1. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
  2. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
    On a brief flick through, one surprising and welcome statement stands out:
    Other than that, "nothing to be done" and CBT/GET looks like the order of the day. Be still my beating heart.
     
    Last edited: Aug 4, 2015
    Valentijn, maryb and Scarecrow like this.
  3. Sidereal

    Sidereal Senior Member

    Messages:
    3,086
    Likes:
    17,138
    Bullshit.
     
    MEMum, Aurator, justy and 11 others like this.
  4. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
    Ever get the feeling you're being mocked?
     
    MEMum, Valentijn, maryb and 4 others like this.
  5. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,942
    England (south coast)
    There is the expected emphasis on CBT/GET, but the document isn't as appalling as I expected it to be, but I've only skimmed it, and i haven't read the last section for therapists. I think there's actually some helpful info for clinicians in there, esp in relation to prescribing pharmaceuticals for symptomatic relief. And they've not labelled the illness as a functional disorder, as far as I've noticed; If I didn't know much about the subject, I think i would be left with the impression that ME/CFS is a legitimate physical illness with a biomedical basis. (But perhaps my expectations were so low, that i've simply been pleasantly surprised? I may be less impressed on my second reading.)
     
    Last edited: Aug 4, 2015
    justy, Valentijn and sarah darwins like this.
  6. user9876

    user9876 Senior Member

    Messages:
    2,582
    Likes:
    18,162
    moderated with many others
    @Jonathan Edwards
    Is there any grain of accuracy in this quote in the BAMCE report? I thought there was a delay generally in auto immune conditons?
     
    Bob and Scarecrow like this.
  7. A.B.

    A.B. Senior Member

    Messages:
    3,733
    Likes:
    23,093
    Regarding "CFS/ME is not a mental health issue". Judging from the treatment recommendations one would get the impression that this is mainly a mental disorder.

    I also question the recommendation for SSRIs as fluoxetine was shown to be worse than placebo in a double blinded trial. It didn't even have an effect on depressive symptoms.
     
    Last edited: Aug 4, 2015
    justy, Valentijn, maryb and 3 others like this.
  8. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,942
    England (south coast)
    I welcome the apparent open-mindedness.

    Oh, the delightful irony of questioning potential bias and statistical findings in relation to the phase II Rituximab trials while referring to CBT/GET as simply: "evidence based treatments".

    That's news to me. Does anyone have any insight into this? (Edit: i crossed posts with user, above.)
     
    Last edited: Aug 4, 2015
    Aurator, Valentijn, moosie and 6 others like this.
  9. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
    Yeah, not looked that closely yet but what I've seen (unsurprisingly) has a distinct resemblance to NICE: throw a few bones to the patient groups (AfME have signed off on this, no really) but ultimately let the psychiatrists get on with whatever they deem to be "evidence based". And whatever else they want to do as well.
    Doesn't this resemble Wessely's apparent open mindedness on the subject? Are we beginning to see a new "line to take" on this, possibly as a holding pattern until they can make it go away?
     
    Last edited: Aug 4, 2015
    moosie, jimells, Cheshire and 2 others like this.
  10. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,876
    Likes:
    5,287
    Scotland
    I think it was AYME rather than AfME
     
  11. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
    In real terms, is there a difference? (genuine question)
     
  12. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,876
    Likes:
    5,287
    Scotland
    I gather not in your opinion.
     
  13. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
    It's all much of a muchness, isn't it? It was a genuine question.
     
  14. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,942
    England (south coast)
    I only saw AYME (Association for Young People with ME) mentioned in the document, and not AfME (Action for ME).

    They are entirely separate organisations, with different leaders and trustees, but perhaps they have similar influences.
     
    Last edited: Aug 4, 2015
    Esperanza and worldbackwards like this.
  15. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,876
    Likes:
    5,287
    Scotland
    Rather than trying to tease the information out of me (I may not be in the mood to play ;)), it might be better to put your own cards on the table and then ask me to comment.

    So at the risk of guessing incorrectly, I assume you're alluding to their involvement with the PACE trial and the stance they've taken in response to the conclusions, which contrasts pretty sharply with that of MEA. In that respect, if that is what you mean, I can't disagree with you.

    However, it doesn't alter the fact that they are two different organisations.
     
  16. Purple

    Purple Bundle of purpliness

    Messages:
    460
    Likes:
    749
    This is so amusing. Or rather it would be amusing - if some irrelevant lay person with no training in medicine would be saying this to their friend. It is a lot less amusing when people saying this are recommending healthcare policy concerning hundreds of thousands people with a crippling disease in the UK. Ah well, yet another one of their glaring errors...

    ETA: I especially 'like' that they say 'all other auto-immune conditions'. Absolute statements like this - 'all' - have no place in science or medicine.
     
    Last edited: Aug 4, 2015
  17. Sidereal

    Sidereal Senior Member

    Messages:
    3,086
    Likes:
    17,138
    CBT crowd floated this claim in the comments section to the Fluge/Mella 2011 PLoS paper. Dr Edwards smacked it down:

    http://www.plosone.org/annotation/listThread.action?root=6147
     
    Valentijn, moosie, biophile and 12 others like this.
  18. Sidereal

    Sidereal Senior Member

    Messages:
    3,086
    Likes:
    17,138
    That's what it looks like to me. That sentence about CFS not being a mental health condition is a total red herring when you consider the rest of the document which seems to be concerned mostly with discouraging clinicians from prescribing anything (including vitamins) except antidepressants.
     
    MeSci and sarah darwins like this.
  19. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,942
    England (south coast)
    Interesting that they have been forced to discuss "all other autoimmune conditions" with reference to ME/CFS. Perhaps that's progress!
     
    Valentijn, MeSci, Purple and 2 others like this.
  20. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,876
    Likes:
    5,287
    Scotland
    Nice find. The comments have been interesting reading. Here's a further extract, this time from Fluge, answering the same point, in which he discusses the range of response times in named autoimmune conditions:

     

See more popular forum discussions.

Share This Page