1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Cognitive testing causes mental exhaustion lasting days
Simon McGrath takes a brief look at a recent paper that reveals some of the most powerful evidence of cognitive problems in people with ME/CFS to date...
Discuss the article on the Forums.

Launch of inclusive UK CFS/ME Research Collaborative

Discussion in 'Phoenix Rising Articles' started by Mark, Apr 30, 2013.

  1. Esther12

    Esther12 Senior Member

    Messages:
    4,875
    Likes:
    4,173
    Help yourself Bob. I've got to admit, that it left me feeling pretty irate after I read it too.
    Bob likes this.
  2. Simon

    Simon

    Messages:
    1,040
    Likes:
    3,079
    Monmouth, UK
    The launch of the CMRC was discussed at the Forward with ME meeting on May 14:

    I do hope someone said something constructive about it too :)

    Professor Stephen Holgate will be addressing the next Forward with ME meeting, on 2 July.
    Firestormm likes this.
  3. PhoenixDown

    PhoenixDown Senior Member

    Messages:
    257
    Likes:
    229
    UK
    When I read the title I immediately thought of "inclusive criteria". I'm now left wondering which of the 11 (or more) sets of criteria for ME/CFS these researchers will be using. Not that I'm trying to rain on anyone's parade, it could bring great change. With hope they'll create a new objective criteria (or better still, subsets based on objective diagnosis), because lets face it, research will be quite imperfect and suffer from a monumental legacy of credibility problems until we reach this mile stone of progress.
  4. Firestormm

    Firestormm Content Team Lead

    Messages:
    5,258
    Likes:
    4,640
    Cornwall England
    Not sure who was present at the Collaborative and also present at this Forward ME meeting, Simon. Charles and Sonja sent apologies and I think both might have been at the launch. Was Lady Mar at the launch also? I can't recall.

    Stephen certainly gets about, doesn't he? Seems to be putting much effort into our condition and raising the profile. I should drop him a line again I think.

    'Champion' [now do pass the ginger beer old chap] :)
    Simon likes this.
  5. Simon

    Simon

    Messages:
    1,040
    Likes:
    3,079
    Monmouth, UK
    At their first meeting, CMRC made subgrouping a research priority - and I agree with you that this is crucial for progress.
  6. Bob

    Bob

    Messages:
    6,301
    Likes:
    6,587
    England, UK
    Simon and Firestormm like this.
  7. Firestormm

    Firestormm Content Team Lead

    Messages:
    5,258
    Likes:
    4,640
    Cornwall England
    First thing I noticed. Hope they agree to go with the NICE range and not the upper ranges that hit the news every once in a while. Feeling a bit nervous now as I had thought it wasn't the charities who were at fault but certain researchers who have a tendency to like citing large numbers. Fact of the matter is that nobody still knows what the prevalence is for this condition. Maybe the ME Observatory epidemiology projects will get us there: but until then the 0.2-0.4% range seems reasonable to me at least. Better than 1-2% at any rate.

    Thanks Bob. Am reading through it all now :)
  8. Bob

    Bob

    Messages:
    6,301
    Likes:
    6,587
    England, UK
    Firestormm likes this.
  9. Firestormm

    Firestormm Content Team Lead

    Messages:
    5,258
    Likes:
    4,640
    Cornwall England
    Indeed. Will finish reading tomorrow and comment more specifically then I think. Nighty night Robert :)
    Bob likes this.
  10. Bob

    Bob

    Messages:
    6,301
    Likes:
    6,587
    England, UK
    Some information posted by Sonya Chowdhury on AfME's Facebook page:

    "It is good news that the NIHR recognise the need for more funding into M.E. and as you may know, we are working with the NIHR, MRC and others, through the Research Collaborative, to raise funding for priorities that were identified by people who responded to our survey - the five priorities we put forward were the top five from the survey."

    "The five priorities were disease processes (to achieve a better understanding of the underlying pathology of M.E), more effective treatments, faster and more accurate diagnosis, clinical course of M.E., outcomes and prognosis, and severely affected patients."

    https://www.facebook.com/photo.php?...omment_id=10476340&offset=0&total_comments=21


    So, to list AfME's research priorities:
    1. disease processes (to achieve a better understanding of the underlying pathology of M.E),
    2. more effective treatments,
    3. faster and more accurate diagnosis,
    4. clinical course of M.E.,
    5. outcomes and prognosis, and severely affected patients.

    Items 1 & 2 seem very reasonable to me, as long as 'more effective treatments' doesn't mean continuously making fine adjustments to GET, and as long as looking into 'disease processes' doesn't pump research funds into studies looking at deconditioning and false illness beliefs.
    Item 3 seems reasonable, depending on the nature of the study.
    Items 4 & 5 seem reasonable as long as they aren't eating up funds that would otherwise go (for example) towards a Rituximab study.
    Firestormm likes this.
  11. Esther12

    Esther12 Senior Member

    Messages:
    4,875
    Likes:
    4,173
    So 2, 3, 4 & 5 can be used by A for ME as an excuse to give money to those whose work many patients are concerned by and do not want to support.
    Bob and Valentijn like this.
  12. Bob

    Bob

    Messages:
    6,301
    Likes:
    6,587
    England, UK
    No 1 as well, I think, if it goes towards research into deconditioning for example.
  13. Bob

    Bob

    Messages:
    6,301
    Likes:
    6,587
    England, UK
    Last edited: Jan 14, 2014
    Simon and Esther12 like this.
  14. Bob

    Bob

    Messages:
    6,301
    Likes:
    6,587
    England, UK
    Notice from Action for ME re membership of the CFS/ME Research Collaborative:
    http://www.actionforme.org.uk/get-informed/news/our-news/join-the-uk-cfsme-research-collaborative

    Membership is open to researchers, charities, health care professionals, students and patients etc.

    For patients, the free membership basically just seems to mean being kept up-to-date with progress.

    Find out more here:
    http://www.actionforme.org.uk/get-i.../joining-the-cfsme-research-collaborative.htm

    To join, complete the application form at the following link (it's a Word document download):
    http://www.actionforme.org.uk/Resources/Action for ME/Documents/research/cmrc-membership-form.docx
    Last edited: Feb 7, 2014
    Simon and Firestormm like this.
  15. Firestormm

    Firestormm Content Team Lead

    Messages:
    5,258
    Likes:
    4,640
    Cornwall England
    @Bob It would seem that even as a patient I would be required to download a form, print it off, complete it, and return in the post. Seems a bit 'old fashioned' and cumbersome for the benefits I must admit. I'll try and discover more...
    Bob likes this.
  16. Leopardtail

    Leopardtail Senior Member

    Messages:
    290
    Likes:
    168
    England
    I have to disagree with Professor Holgate very strongly here. Learning from research into 'general fatigue' is fine. But ME/CFS funding should be used exclusively for OUR illness not diverted into yet more 'related illnesses'.

    The issue with the involvement of psychologists in research into ME is less the discipline and more the evil individuals who have foisted insulting pseudo-science onto us and abused funding for their own ends. It's about WHICH psychologists are involved and the standard of science.

    They have abused our funding and should not be getting more of it. We must be able to trust those involved in our research. I would not trust White/Chalder not to block research on Neurotransmitters that did not fit their viewpoint.

See more popular forum discussions.

Share This Page