New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
Discuss the article on the Forums.

New BACME guidelines for severely affected out... somewhere?

Discussion in 'General ME/CFS Discussion' started by Esther12, Feb 26, 2017.

  1. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    Just saw this from Colin Barton's group: https://measussex.org.uk/severely-affected-guidelines-february/

    Anyone else know anything about this? Couldn't find the guidelines on-line anywhere. Knowing BACME, I would expect them to be appalling.
     
  2. Sasha

    Sasha Fine, thank you

    Messages:
    12,782
    Likes:
    34,193
    UK
    Esther12 likes this.
  3. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    Thanks - I'd failed to find that.
     
  4. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    Wow - even Action for ME are not rubbish enough to be recommended by BACME.

    I don't know much about reMEmber, but saw they recommended the BACME guidance.
     
  5. user9876

    user9876 Senior Member

    Messages:
    2,583
    Likes:
    18,182
    They have their symptom management guide
    https://www.bacme.info/sites/bacme..../BACME Therapy & Symptom Management Guide.pdf
    But that has been out for a long time. I'm sure someone had sent them a whole set of mistakes and inaccuracies in their document. One was there description around Rituximab which they haven't corrected. It is worrying that a group aiming to give advice to professionals have not corrected inaccuracies in their advice.
     
  6. Cinders66

    Cinders66 Senior Member

    Messages:
    415
    Likes:
    1,789
    It's a severe ME guideline which seems to be being kept part secret, i.e. Not for public consumption but available on request. Stonebird and 25% group have written in condemnation of it but not made public the literature itself so I assume its copyrighted and not available for passing around and download

    Frankly these BACME are the last people I'd like to see giving advice on the severely ill
     
    Jan, MEMum, Snowdrop and 1 other person like this.
  7. Orla

    Orla Senior Member

    Messages:
    706
    Likes:
    1,451
    Ireland
    Dolphin, Tyto alba, Jan and 2 others like this.
  8. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,463
    Esther12 likes this.
  9. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    I only skimmed through but it looked bad, with some mixed stuff in there. Sold with an anecdote with a 'Continuing progress and recovery'section.

    The whole positive thinking/hope/helpful-thoughts stuff seems so unpleasent given the limited, but often fairly grim, evidence we have available to us on prognosis and treatment efficacy.

     
    Sean, slysaint and Valentijn like this.

See more popular forum discussions.

Share This Page