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New BACME guidelines for severe ME

Discussion in 'PsychoSocial ME/CFS News' started by Sly Saint, Jan 29, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "
    The Sussex ME Society works for the nearly 5,000 people in the county affected by Myalgic Encephalopathy (ME) or Chronic Fatigue Syndrome(CFS) including many people from the LGBT communities here in Brighton and Hove.

    THE charity is launching new guidelines for doctors that are caring for those who are most severely affected by the condition.

    The document has been produced by the British Association for Chronic Fatigue Syndrome/ME (BACME) and includes experienced clinicians involved in the diagnosis and management of patients with severe ME."
    https://www.gscene.com/news/new-doctors-guidelines-for-severe-me/

    https://measussex.org.uk/doctors-guidelines-for-severe-me-january/

    haven't found the actual guidelines yet!

    eta: given Colin Bartons track record and BACMEs I'm sure we are all concerned.
    eta2: this is a bit weird tho, why are they the ones launching it?
     
  2. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    The bacme published some severe ME guidance as far as a couple of years back but didn’t put them on their site for some reason. As a severe I really dont want that group launching guidelines on us. There’s been debate on them before maybe on PR, a mixed bag from what I recall.
     
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  3. Cinders66

    Cinders66 Senior Member (Voting Rights)

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  4. Cheshire

    Cheshire Moderator Staff Member

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    Considering who the MEASussex is collaborating with, there are reasons to be concerned:

    https://measussex.org.uk/what-is-me-or-cfs/
     
  5. Hell..hath..no..fury...

    Hell..hath..no..fury... Senior Member (Voting Rights)

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    Well that sent a chill down my spine, possibly because i don’t have enough energy for fear or anger.

    When i read it i thought i was reading some old guidelines but the link on their website took me to this too. So this ‘is’ the current guidelines??

    And Allistair Miller is now retired from ME practice?

    Please tell me i’m completely wrong and my brain fog is confusing me.
     
  6. Cheshire

    Cheshire Moderator Staff Member

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    No, this is not in the new guidelines, but is in the section 'what is ME and CFS' of the Sussex & Kent ME/CFS Society website.
     
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  7. Hell..hath..no..fury...

    Hell..hath..no..fury... Senior Member (Voting Rights)

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    Phew i just clicked on a link saying ‘to read guidelines’ and that page popped up. My chill just warmed; a little.
     
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  8. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Thanks for always keeping us up to date on BACME @Sly Saint .

    They are a group that prefers to work from the shadows with no transparency. That alone is reason to have concern.
     
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  9. rvallee

    rvallee Senior Member (Voting Rights)

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    Now this has to be trolling. Is being a jerk a requirement to work in psychosomatic medicine? Who funds this fake charity?
     
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  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    no idea; it says version 1, so maybe this is version 2? still haven't found it tho'

    There are several threads on the Sussex and Kent ME Society here (search sussex in thread title).

    but as AfME also back BACME
    "The British Association for CFS/M.E. (BACME) also publishes a therapy and symptom management guide. This practical clinical treatment summary incorporates existing tools and methodologies from specialists who work with adults and children who have M.E., and offers a consensus approach to broader treatment based on clinician expertise, patient experience and the best available evidence. It's free to download at BACME's website." (On AfME website)

    I'm surprised that they are not the ones 'launching' it.

    Do the MEA know anything?
    @Russell Fleming

    on the article it says
    "The guidelines are available by calling 01273 674828"

    anyone fancy giving them a ring?

    eta: it just occurred to me that as BACME were previously closely aligned to AYME (there were also some financial ties) maybe (now AYME no longer exist, in name anyway) they (BACME) have joined up with the Sussex ME Society as a 'good fit'.
     
    Last edited: Jan 30, 2019
  11. Andy

    Andy Committee Member & Outreach

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    Just sent this email,
    I'm going to err on the side of caution and not hold my breath until I receive it.
     
  12. rvallee

    rvallee Senior Member (Voting Rights)

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    There are no valid reasons to keep medical guidelines a secret. It would show awareness that the material is problematic, which will create all sorts of legal implications in the future. Keep the pressure on, this is good.

    Surely the clinics have such material as well? Probably in the same file cabinet as the "there is no disease" Christmas pamphlet. Definitely worth making requests for any and all material used in practice. There are probably policy guides used at the higher levels as well, although it will definitely take many FOI requests to get through it all.
     
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  13. NelliePledge

    NelliePledge Moderator Staff Member

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  14. Esther12

    Esther12 Senior Member (Voting Rights)

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    Bleurgh.
     
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  15. Sean

    Sean Senior Member (Voting Rights)

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    Stopped reading there.
     
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  16. NelliePledge

    NelliePledge Moderator Staff Member

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    to be fair I stopped reading after Sussex ME.........
     
  17. Andy

    Andy Committee Member & Outreach

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    Well, I need to wind back my cynicism somewhat as it's just been sent to me. Not read it yet so can't make any comment about the content.
     

    Attached Files:

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  18. Trish

    Trish Moderator Staff Member

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    Glancing through the document it seems to be a mix of good and bad. It has good recognition of the severity, symptoms and needs, including access to home visits for medical care, but the advice on treatment seems to focus a lot on rehabilitation, activity planning, incremental increases in activity, and normalising sleep patterns.

    I can see the point of the planning in terms of breaking down activities into smaller increments and resting in between, but it all sounds too rigid, and too geared to the mantra of 'find your baseline and start increasing' which may not be possible for some people.
     
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  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I have read most of it; as @Trish says some of it sounds reasonable but the underlying tone seems to be very much to do with a combination of deconditioning, and Mayo clinics approach (ie seeing all symptoms as 'allergy type intolerances') combined with fear avoidance.

    bits like this
    are dangerous imo, as surely it should be up to the patient to decide whether or not aids are still necessary.

    I also have concerns with:
    "
    BACME Severely Affected Working Group contributors

    Ms Mary Jane Willows, Chief Executive AYME and BACME executive"

    and
    "We would also like to acknowledge and thank additional contributions/feedback from :

    Prof Esther Crawley, University of Bristol
    Dr Hazel O’Dowd, Bristol CFS/ME Service"

    @Naomi10 given your past/present experience, what is your opinion of this?
     
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  20. Amw66

    Amw66 Senior Member (Voting Rights)

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