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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

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    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

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  3. Esther12

    Esther12 Senior Member

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    Thanks - I'd failed to find that.
     
  4. Esther12

    Esther12 Senior Member

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    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

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    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

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    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
     
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  7. Orla

    Orla Senior Member

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  8. slysaint

    slysaint Senior Member

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  9. Esther12

    Esther12 Senior Member

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    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.

     
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