1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

Discussion in 'News from organisations' started by Andy, Mar 6, 2018.

  1. phil_scottish_borders

    phil_scottish_borders Established Member (Voting Rights)

    Messages:
    57
    Location:
    Borders, Scotland
    Hi - five of those named are still on the PAG, yes, but we're looking for about 5 new people - so do apply!

    I personally am off to London tomorrow to attend the CMRC quarterly meeting there. Need to prep for this - I'm not in the same league as some of these (any of these???) scientists...... we'll hopefully talk about recruitment there, I know there have been a number of applications already (which is good news!). The patient voice will be heard!
     
    andypants, MEMarge, Hoopoe and 7 others like this.
  2. phil_scottish_borders

    phil_scottish_borders Established Member (Voting Rights)

    Messages:
    57
    Location:
    Borders, Scotland
    Ah my embarrassing appearance. this was Sept 2017, last year. I had had an (unrelated to ME) illness, and an injury (requiring surgery), & a house move (!) all in the weeks running up to that. So I wasn't best prepared.

    We no longer have any connection to Bristol University, i would mention.
     
    andypants, MEMarge, Sly Saint and 4 others like this.
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,573
    Location:
    UK
    Action for M.E.
    28 November at 02:58 ·
    First clip from our AGM and conference this morning... our new Trustee candidate Phil Murray talking about the need for biomedical research to find biomarkers for what may well be not one single illness but many under the #MECFS umbrella.

    @phil_in_bristol
     
    Last edited: Dec 2, 2018
  4. Andy

    Andy Committee Member

    Messages:
    21,805
    Location:
    Hampshire, UK
  5. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,733
    Location:
    UK
    I think that we will be getting recordings off full talks starting sometime this week.

    They may well be adding up to 7 peopel to the PAG, may hear re this before Christmas, not sure.
     
  6. phil_scottish_borders

    phil_scottish_borders Established Member (Voting Rights)

    Messages:
    57
    Location:
    Borders, Scotland
    Hi Marge - yes you're right - we are going to make offers now, having gone through a rigorous, unbiased, anonymised process of selection of all the applicants.

    PAG members can choose whether or not to remain anonymous, that's their choice. I'm hoping we have several extremely promising applicants who will bring a positive influence to the group. We'll probably have replies received by Xmas, & then in January induction will begin. So if nothing's been announced until the new year, it'll be "because of Christmas" (!).
     
    MEMarge, Trish, Amw66 and 1 other person like this.
  7. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    1,204
    https://mrc.ukri.org/news/blog/encouraging-new-ideas-for-cfsme-research/

    This is old news and some might think it’s dredging up the past but I hadn’t seen this at the time although I’d read the official CMRC report. However given that Holgate has been given hero, leader, chief negotiator status by some for our illness I found this write up AGAIN concerning on his understanding.

    When defining the illness he ignores PEM, as the conference has with undue emphasis on fatigue across illness. Secondly he is totally still on the fence regarding psychological and biological whilst recognising the biological basis. I think that this is troubling. All chronic illnesses have risk of psychological consequences but MS Or lupus would not be framed as biological and psychological and he seems to be perpetuating, atleast then, the UK medical way of framing the illness eg NICE trying to categorise us under neurology and mental health. I still don’t think he was the man we should have entrusted leadership to, but maybe if we wanted this connection to the MRC that was the only way to have him as the package along with his say on things such as Esther Crawley as deputy chair ?



    https://mrc.ukri.org/funding/how-we-fund-research/opportunities/cfs-me-highlight-notice/

    I discovered this when I was look at the MRC highlight notice , supposedly there to stimulate research applications although clearly failing. In its descriptions of ME there’s no mention of PEM, again, which surely is a major omission if we want to interest researchers and get them intrigued and thinking of this illness as more than a fatigue based MUS. I do think that at the MRC and CMRC ME and PEM have not been recognised, emphasised enough. If I were trying to educate and entice researchers I would highlight PEM as a curious phenomena, emphasis how it’s not just deconditioning and try to get people thinking about that.
     
    Last edited: Feb 22, 2019
  8. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    2,134
    Location:
    Canada
    What exactly are the CMRC currently up to? According to Sasha's new thread there is to be no conference this year.

    I admit I've never been a fan of Holgate's approach to 'helping' this community. He's always appealed to me as the trojan horse. The gift to the ME community signalling peace with the BPS crowd even as they plot against us.
     
  9. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    1,204
    I’m not sure, Dr Charles Shepherd said conference Was off for “logistical reasons” then said he wouldn’t go into that any further which seems excessively cagey if it was just building booking etc and the minutes mentioned that they’d be more research to discuss later. MRC essentially show case their research at the CMRC conference but probably have a lack of stuff seeing’s they haven’t funded much. Behind the scenes they’re in dialogue with MRC over funding mega i think

    The CMRC has always baffled me, on one hands it’s supposed to be independent of MRC but then we get told Esther Crawley had to feature and it had to be a broad church including psychiatrists, says who? Holgates been the MRC man of choice for CFS since 2004, if you look at the early 2008 minutes of collaborations, from memory i think that it seemed essentially fatigue based. I’m sceptical, probably sounding conspiracy mad, that the MRC had any intention of our field doing anything but slowly evolve (for whatever reason, indifference, prejudice, plot) which is why it suits them to keep funding low, going slow and why old brigade people Wessely, white, Crawley were there until recently.
     
    rvallee, ladycatlover and Snowdrop like this.
  10. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    2,134
    Location:
    Canada
    Yes, there is so much murkiness at CMRC. Esther Crawley finally 'moved on' and in came Chris Ponting who was said to be a good egg by reliable sources yet all the same they need to pick a side and start declaring their intentions toward the very sick people who supposedly they are wanting to help.

    I hate politics. An endless tug of war leading nowhere.
     
    rvallee, ladycatlover and Cinders66 like this.
  11. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,980
    I believe that the conference was postponed for 3-6 months mainly because Sonya Choudhury was taking a period off work to deal with a medical issue. Not the end of the world to have a little delay, I think.
     
    Last edited: Feb 23, 2019
    MEMarge, ladycatlover and Amw66 like this.
  12. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    2,134
    Location:
    Canada
    It's certainly not the end of my world.
     
    MEMarge and ladycatlover like this.
  13. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,520
    Location:
    Aotearoa New Zealand
  14. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,980
  15. Trish

    Trish Moderator Staff Member

    Messages:
    51,841
    Location:
    UK
    Has anyone bought and read the book referred to above?

    I had a look a the website which calls itself MECFS Alliance, and refers to a 'think tank', and apart from referring to Holgate and the book's author, no names are given. I have never heard of it. The press release is here:
    Code:
    https://mecfsalliance.org.uk/2021/05/10/press-release-10th-may-2021/
    I thought I might take a look at the book, but the only way to buy it is from the website and you have to give your bank details to 'donate' to get a copy. I'm reluctant to do that for what seems like a one person website where I'm not confident about security. It's not on Amazon, so I assume is self-published. I wish the author well, but I think we need more information about the content and who is behind it before donating on an unknown website.
     
    Hutan, JohnTheJack, janice and 4 others like this.
  16. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,522
    I have always thought of Holgate as classic fence sitter.... but he did deliver decisively on Ella's case on Air Pollution so credit there. https://www.independent.co.uk/news/...-kissi-debrah-air-pollution-law-b1835395.html
     
    janice likes this.
  17. Trish

    Trish Moderator Staff Member

    Messages:
    51,841
    Location:
    UK
    I have now read it. Trying to be kind, I'd say it's one person's perspective of how to present the history of ME/CFS and of the CMRC. I think it omits key aspects and focuses too much on others. Not a recommendation.
     
    MEMarge, Nellie, NelliePledge and 6 others like this.
  18. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,140
    Location:
    UK West Midlands
    A bit odd to have an ME organisation with alliance in the title that nobody on S4ME has said they’ve heard of when so many here have so much knowledge of the world of ME.
     
    mango, MeSci, MEMarge and 2 others like this.
  19. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    Messages:
    1,580
    Location:
    North-West England
    It's not really a formal organisation as such. I know Opal, the author of the book, through the CMRC PAG, which she has been involved with for many years.
     
    Trish likes this.
  20. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,140
    Location:
    UK West Midlands
    Ah ok but the website comes across like an organisation to me.
     
    MEMarge, Chezboo, Andy and 1 other person like this.

Share This Page