1. Guest, the 'News in Brief' for the week beginning 19th July 2021 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice
  3. Contribute to feedback on the CDC Evidence Review, for more details click here
    Dismiss Notice

CMRC minutes from July. Countess of Mar has joined CMRC representing Forward ME

Discussion in 'General ME/CFS News' started by Cinders66, Jul 31, 2018.

  1. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    1,186
    Likes Received:
    7,131
    https://www.actionforme.org.uk/uploads/images/2018/07/DRAFT_Minutes_CMRC_10.7.18.pdf

    I’ve not seen these or this news anywhere before so posting here. I can’t see much else in significant developments. Another BACME member is involved. Dr Louis nacul was there as an observer. Mainly a discussion on the three areas Holgate has as priorities and limited news of discussions with DoH.

    In the name of transparency I thought the charities involved would post these
     
    Inara, Sly Saint, Skycloud and 9 others like this.
  2. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    1,186
    Likes Received:
    7,131
    Of Forward ME members, MERUK left CMRC and the 25% I don’t think would join, so idk if CoM is representing all of them.
     
    Inara, Skycloud, Binkie4 and 3 others like this.
  3. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    8,133
    Likes Received:
    48,151
    Location:
    UK West Midlands
    so what does Gabrielle Murphy bring to the biomedical table it would seem she has a clone as well according to the attendees list - I hope that means she doesnt get 2 votes
     
    Inara, Binkie4, MEMarge and 1 other person like this.
  4. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,090
    Likes Received:
    33,155
    Libus Ratcliffe is the new BACME chair. I don't know anything about them.

    I'm with SC on this. That AMS report does not sound like something we want to encourage.

    This sounds like BS to me. The James Lind priority setting for MS was what led to the recent flowering of MS fatigue quackery from Trudie Chlader and Rona Moss-Morris:

    http://www.jla.nihr.ac.uk/priority-...Top-10-unanswered-research-questions-2013.pdf

    They decided to prioritise "3. Which treatments are effective for fatigue in people with MS?" It's far from clear that their process included making sure the patients involved understood the difficulty of measuring fatigue, or the dangers of using subjective self-report questionnaires to measure 'fatigue' in trials of an intervention like CBT.

    Is that document public yet? I always get nervous when people fail to focus on the details.

    Some people were raising concern that the current PAG will be made up of only those who failed to resign during the problems with MEGA.

    No BACME conference collab.

    I saw someone else wondering what had happened to that recently.
     
    Last edited: Aug 2, 2018
  5. Medfeb

    Medfeb Senior Member (Voting Rights)

    Messages:
    379
    Likes Received:
    3,182
    @Esther12 - thanks for posting these comments.

    Do you happen to know what this refers to?
    And what's the general opinion of BACME? I saw some educational material from them that I thought missed the boat
     
  6. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,090
    Likes Received:
    33,155
    Yeah, BACME are terrible. They were promoting PACE as a great thing, and I've not seen any of them speak out about the way the patients pointing out problems with PACE since then have been smeared. They had seemed to want to combine conferences with the CMRC conference, but I don't see them as an organisation with any integrity so am pleased to see it's not going to happen.
     
    Hutan, Inara, Robert 1973 and 9 others like this.
  7. Trish

    Trish Moderator Staff Member

    Messages:
    33,642
    Likes Received:
    160,336
    Location:
    UK
    I found a Dr Libuse Ratcliffe who is a specialist in general medicine in Liverpool and another one who is an infectious diseases specialist in Manchester with publications on meningitis and HIV. I have no idea whether these are the same person, and whether it's the person who chairs BACME.

    The BACME website doesn't name their officers. Their list of clinics for Liverpool says they offer a consultant physician clinic at Liverpool hospital, so this may be where Libuse Ratcliffe fits in. Their latest conference was in Liverpool too. No mention of Libuse Ratcliffe on their conference info.
    The conference is discussed on this thread. @Joan Crawford, can you enlighten us?
     
  8. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    1,186
    Likes Received:
    7,131
    It hasn’t progressed as I would like. The DoH seems to think SHs strategic priorities are the way, that’s it. The strategic priorities have seemingly progressed little from when they were suggested last year. Eg Holgate wanting a uk version of IOM report hadn’t got anywhere, with CS proposing a symposium before the report, delay delay. The dementia platform thing had not had “first step” meeting with mrc Yet, due in July, the patients priorities assessment thing looks like another delay, yet to be started with some laborious procedure to understand “what patients want”. If they really want to engage with all patients, hold a teleconference instead of cherry picking PAG that’s just sympathetic yes men. Sonya is pursuing her international advocacy stuff.

    Pleased it’s no to the bacme and chasing up David nutt

    But what’s changing, progressing in uk CFS research and funding? They have low number of abstracts submitted.
     
    arewenearlythereyet, Wonko and Trish like this.
  9. Skycloud

    Skycloud Senior Member (Voting Rights)

    Messages:
    2,005
    Likes Received:
    15,109
    Location:
    UK
    I agree - modern technology allows for many easy ways of engaging with patients; there's little excuse. I'm becoming increasingly uncomfortable with the voice of patients being selected and filtered, and a few organisation reps speaking for us. Can't articulate it well but it's too opaque and disconnected from the patient community

    Glad to see that Chris Ponting would like to improve PAG transparency, but there's no detail about that. Good of the MEA to provide an expenses budget for patients.
     
    Inara, Keela Too, Trish and 2 others like this.
  10. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,108
    Likes Received:
    12,845
    PAG looking for new members.
     
    adambeyoncelowe and Skycloud like this.
  11. Skycloud

    Skycloud Senior Member (Voting Rights)

    Messages:
    2,005
    Likes Received:
    15,109
    Location:
    UK
    It would be great if someone who was an S4ME member and would liase with patients here were to join PAG.
     
    Hutan, Simon M and Trish like this.
  12. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,323
    Likes Received:
    16,887
    What are the details for applying to the PAG?
     
    Trish likes this.
  13. Andy

    Andy Committee Member (& Outreach when energy allows)

    Messages:
    13,575
    Likes Received:
    98,178
    Location:
    Hampshire, UK
    I would guess that AfME are the people who are meant to be able to supply that kind of information. Alternatively, if you are on Twitter, perhaps ask Chris Ponting directly?
     
  14. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    1,925
    Likes Received:
    12,453

    BACME gave a platform to Per Fink at their last conference.

    All one needs to know, really.
     
    Hutan, mango, It's M.E. Linda and 9 others like this.

Share This Page