Discussion in 'Phoenix Rising Articles' started by Mark, Apr 30, 2013.
Help yourself Bob. I've got to admit, that it left me feeling pretty irate after I read it too.
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.
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.
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]
At their first meeting, CMRC made subgrouping a research priority - and I agree with you that this is crucial for progress.
UK CFS/M.E. Research Collaborative Executive Board
Summary of discussion
19 July 2013
Minutes of recent executive (teleconference) meeting:
http://www.actionforme.org.uk/Resources/Action for ME/Documents/get-informed/CMRC-190713.pdf.pdf
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
Minutes of Forward ME Group, with Stephen Holgate talking about the Research Collaborative.
Very interesting, and worth reading.
Indeed. Will finish reading tomorrow and comment more specifically then I think. Nighty night Robert
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."
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.
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.
No 1 as well, I think, if it goes towards research into deconditioning for example.
These are the minutes from the 7th October Research Collaborative meeting.
(Have we seen them yet? I think it's new.)
UK CFS/M.E. Research Collaborative Executive Board
Summary of Discussion 7th October 2013
http://www.actionforme.org.uk/Resources/Action for ME/Documents/get-informed/cmrc-notes-191213.pdf
Action for ME Tweeted it:
Notice from Action for ME re membership of the CFS/ME 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:
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
@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...
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.
You can also try a Google Site Search
Separate names with a comma.