1. The 'News in Brief' post for w/c 4th Nov can be read by clicking here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

IAFME trans-national consensus document covering Myalgic Encephalomyelitis (M.E.). "Recognition, research and respect: An agenda for change in M.E"

Discussion in 'Advocacy Projects and Campaigns' started by Andy, Dec 4, 2018.

Tags:
  1. Andy

    Andy Committee Member & Outreach

    Messages:
    7,868
    Likes Received:
    57,584
    Location:
    Hampshire, UK
    Code:
    https://www.facebook.com/IAforME/posts/741782479527220


    Document can be found here, https://www.actionforme.org.uk/uploads/images/2018/12/IAFME-recognition-research-respect-041218.pdf
     
  2. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    1,046
    Likes Received:
    6,666
    There seems to be a mistake with the signature from Canada being from Colorado.
    It seems that National FM/ME Canada did not sign or were not asked.
     
    DokaGirl, MSEsperanza, Simone and 4 others like this.
  3. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    1,769
    Likes Received:
    12,227
    The list of signatories is very interesting. BACME and Pariante are among them.
     
  4. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    4,157
    Likes Received:
    27,571
    Location:
    UK West Midlands
    :banghead:
     
    MSEsperanza, Simone, rvallee and 3 others like this.
  5. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    1,046
    Likes Received:
    6,666
    I didn't catch that. What are they playing at? Perhaps it's an indication of their savvy. At arse covering.
     
    MSEsperanza, rvallee, EzzieD and 7 others like this.
  6. obeat

    obeat Senior Member (Voting Rights)

    Messages:
    473
    Likes Received:
    3,082
    Possibly they realise the research money is going to move elsewhere. Follow the money!
     
  7. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    4,157
    Likes Received:
    27,571
    Location:
    UK West Midlands
    Presuming BACME Murphy Pariente agenda is getting funding for ANS type research
     
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,581
    Likes Received:
    30,273
    Location:
    UK
    "While not formally classified as such, ME and CFS have often been grouped with Medically Unexplained Symptoms, Functional Somatic Syndrome, Somatic Symptom Disorder, Bodily Distress Syndrome, and similar terms (Improving Access to Psychological Therapies, 2014; Fink, 2017). This continues to put ME at high risk of being treated erroneously as a psychological illness."

    have often? doesn't she mean are? at high risk of being treated as psychological? is being treated as such.

    Why are AfME now raising these issues with WHO having barely raised any of them with the people responsible here?

    I don't get it.

    Meanwhile see the (non)answer to the question in HOC about NICE and recognising the WHO classification of ME as neurological.

    also not impressed if BACME and co continue to 'control the narrative'; saving their behinds(?)
     
    MSEsperanza, Chezboo, rvallee and 9 others like this.
  9. Unable

    Unable Senior Member (Voting Rights)

    Messages:
    192
    Likes Received:
    1,739
    Location:
    UK
    I thought the document looked alright. Suitable emphasis on post exertional effects. And that “chronic fatigue” is a symptom, and should not be conflated with ME. Even mentions problems of MUS.
     
    MSEsperanza, Dolphin, Chezboo and 8 others like this.
  10. Hutan

    Hutan Moderator Staff Member

    Messages:
    6,160
    Likes Received:
    28,205
    The document isn't bad; it comes out pretty clearly against CBT and GET and 'personality, psychological and behavioural issues as factors that predispose and perpetuate the disease'. (The disease being ME). There are signatories there like Nigel Speight and Nina Muirhead.

    The involvement of BACME and some other proponents of psychological causes of CFS is disconcerting. Presumably they are willing to hive off a section of the 'chronic fatigue' spectrum as a biologically caused 'ME', while retaining the majority as 'CFS' for their psychologically focused treatments.
     
  11. obeat

    obeat Senior Member (Voting Rights)

    Messages:
    473
    Likes Received:
    3,082
    Or we may be about to witness the rare phenomenon of leopards changing their spots( purely for self-interest!)
     
  12. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    1,769
    Likes Received:
    12,227
    I think, given BACME's submission to NICE (which also asked for more research into biomedical treatments), this indicates a possible sea change. Even if they're following the money, that's a good thing in the end.

    To me, the statement doesn't really suggest they want to keep a separate 'fatigue spectrum' entity.
     
    MSEsperanza, Dolphin, Simone and 7 others like this.
  13. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    4,157
    Likes Received:
    27,571
    Location:
    UK West Midlands
    They mean ANS when they say biomedical tho don’t they so they can still do CBT to calm down the high achiever type A personalities (dunno what they do with the cynical ones :whistle:)
     
    DokaGirl, MSEsperanza, Simone and 6 others like this.
  14. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,285
    Likes Received:
    27,136
    Thanks for posting, and to those commenting. The politics of this do seem a bit interesting.
     
  15. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    1,769
    Likes Received:
    12,227
    Maybe. But they criticise PACE and Cochrane as being flawed, and write:
    I.e., they're saying pacing is what 'disease experts' prefer, rather than the usual combo of CBT/GET.

    They also go beyond limiting the illness to the ANS:
    I think that if they've signed this and don't actually believe these things, then that's a bit of an own goal. It reads like a manifesto to me.
     
    MSEsperanza, Dolphin, Simone and 8 others like this.
  16. Unable

    Unable Senior Member (Voting Rights)

    Messages:
    192
    Likes Received:
    1,739
    Location:
    UK
    I was curious about the bit where they said “. . . disease experts recommend . . .”, - they didn’t say exactly who they were referring to. That bit was not referenced.
     
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,581
    Likes Received:
    30,273
    Location:
    UK
    key speakers at the BACME conference were Esther Crawley (former Chair) and Per Fink (not a member).

    Their CFS/ME Therapy download (from 2014) says:
    "
    Guidance for therapists covering the provision of therapy for CFS/ME. This includes a
    list of resources (available on the website BACME.info) for use in therapy, as well as
    guidance on support and supervision.
    It does not replace specialist CBT and GET training (recommended by NICE and available at
    www.PACEtrial.org). "

    (note, most of the links no longer work).

    I can't find info on the current BACME executive committee.
    Their constitution is here:
    https://www.bacme.info/sites/bacme.info/files/pdf/bacme-constitution.pdf

    presumably they signed up on behalf of their members (as with Forward ME group) (?)

    If they really believed what they signed they would not still be doing research into CBT/GET and offering it as treatment, and they would have demanded that CBT/GET be removed from the NICE guidelines immediately.
     
  18. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    925
    Likes Received:
    5,931
    Location:
    UK
    Resurfacing briefly from retirement to clarify and update on the following extract from the IAFME document:


    On Page 6, the document states (my highlighting):

    "Disease classification

    "The World Health Organization (WHO) added ME to the neurological chapter of the International Classification of Diseases (ICD) in 1969. In the ICD-10, ME is an inclusion term under post-viral fatigue syndrome (code G93.3). Following two outbreaks in the mid-1980s, the US coined the alternative term “chronic fatigue syndrome,” which the WHO added to ICD-10 and indexed to “post-viral fatigue syndrome.” In its version of the ICD-10 (the ICD10-CM), the US reclassified CFS to be equivalent to the symptom of “chronic fatigue, unspecified” while leaving ME in the neurological chapter. In the ICD-11, the terms “ME” and “CFS” are in the neurological chapter following the precedent set in ICD-10. But WHO staff have submitted an ICD-11 proposal to reclassify the terms to the Signs and Symptoms chapter under the musculoskeletal system section based on the claim that there is no evidence of neurological impairment and that the disease is perpetuated by psychological processes (Dua, 2017). These claims are not supported by the evidence of neurological, immunological, and energy metabolism impairment. (National Academy of Medicine 2015; Komaroff & Cho, 2011; Komaroff et al, 2018a). The WHO has stated that no decision will be made on proposals to change the classification until they complete a systematic review..."


    1 For clarity: Benign myalgic encephalomyelitis was included in the Index, only, for the WHO's ICD-8 and ICD-9. It was not included in both the Index and the Tabular List until ICD-10 was published in 1992.

    Reference and screenshots from ICD-8 and ICD-9: Post #172: https://www.s4me.info/threads/who-w...-leads-to-poor-outcome.5109/page-9#post-96715


    2 Dr Tarun Dua is a medical officer working on the Program for Neurological Diseases and Neuroscience, Management of Mental and Brain Disorders, WHO Department of Mental Health and Substance Abuse. This WHO department has responsibility for both mental disorders and neurological diseases and disorders. Its Director is Dr Shekhar Saxena.

    Dr Dua had acted as lead WHO Secretariat and Managing Editor for ICD Revision’s Topic Advisory Group (TAG) for Neurology, an external working group chaired by Prof Raad Shakir. TAG Neurology was sunsetted in October 2016.

    The proposal submitted by Dr Tarun Dua (November 06, 2017) was stated by Dr Dua as "[having] been submitted on behalf of Topic Advisory Group (TAG) on Diseases of the Nervous System, and reiterates the TAG’s earlier conclusions.”


    On November 19, 2018, the proposal submitted by Dua, in November 2017, was marked as Rejected by ICD-11 Proposal platform admins:

    https://icd.who.int/dev11/proposals/f/en#/http://id.who.int/icd/entity/569175314


    This decision to reject the Dua/TAG Neurology proposal recommending that the terms should be relocated under the Symptoms, signs chapter is accompanied by this brief rationale from ICD-11 Proposal Platform admins “Team3 WHO”:


    Screenshot: Accessed November 22, 2018:

    [​IMG]



    Importantly, the decision to retain the terms in the Disorders of the nervous system chapter is supported by the WHO MSAC and CSAC* committees.


    *The Classifications and Statistics Advisory Committee (CSAC) takes over the role of the ICD-10 Update and Revision Committee (URC). The last update for ICD-10 will be 2019.


    With the Dua/TAG Neurology proposal rejected by WHO classification experts and the MSAC and CSAC committees, this means that these ICD-10 legacy terms continue to stand as per the “Implementation” version of the ICD-11 MMS which was published in June 2018:


    https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/569175314

    [​IMG]





    Action for ME were informed of this development on November 20.


    My November 22 report on this development can be read at:

    Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part Three: WHO rejects Dr Dua’s proposal

    https://dxrevisionwatch.com/2018/11...d-11-part-three-who-rejects-dr-duas-proposal/
     
    Last edited: Dec 5, 2018
  19. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    1,769
    Likes Received:
    12,227
    My point, though, is this: they're giving us something that helps us, whether they really believe it or not.

    If BACME signs a thing that says CBT and GET aren't treatments, that's important.

    If BACME, from this moment onwards, stops outwardly endorsing those treatments, it's easier to argue that they're not suitable.

    If even the British Association of CFS/ME is now saying it doesn't endorse the two most controversial treatments in the illness, then it's no longer a question of 'militants' who resist a psychological explanation. It's no longer a 'fringe' group pushing for this. The establishment is now saying it too.

    Isn't that a win?
     
  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,581
    Likes Received:
    30,273
    Location:
    UK
    "IF"; my mother often used a saying "avec des 'si' on mettrait Paris dans une bouteille"

    Yes, I see your point but my point is they are saying it to the wrong people.

    (anyone tweeted this 'declaration' to Michael Sharpe or Simon Wessely?)
     
    Last edited: Dec 6, 2018

Share This Page