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(From 2011) NHS National Research Ethics Advisors’ Panel discuss "CFS/ME"

Dolphin

Senior Member
Messages
17,567
This is not that exciting but thought I'd post it somewhere:

http://www.hra.nhs.uk/wp-content/uploads/2013/07/NREAP_MINUTES_2011-07-13_FINAL.pdf

NHS National Research Ethics Advisors’ Panel

[..]

4.1. CFS/ME Research

Richard Tiner drew the panel's attention to a recent article in the BMJ entitled “Living with CFS/
by Ollie Cornes which he felt would be of interest. CC would circulate the article to the panel by
mail.

It was also pointed out that the MRC has highlighted Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis (CFS/ME) as a high priority and will be making available up to £1.5M for new
research into the mechanisms of CFS/ME. The MRC has also set up a new group, the CFS/ME
Expert Group (chaired by Professor Stephen Holgate, chair of the MRC Population and System
Medicine Board), to consider how new high-quality research into CFS/ME and partnerships betw
researchers already working on CFS/ME and those in associated areas might be encouraged.
2
I wonder was there a particular reason this was discussed? Minutes don't always tell the full story.
 
Messages
13,774
Big up to @olliec

Also, his article appeared in the same issue as the first of the post-PACE 'militant' stories that followed on from the BMJ claiming CBT and GET showed a 30% cure rate... apparently they didn't think that patient irritation was due to their inaccurate claims, but rather patient's stupidity. That they chose to mention the Carnes piece is probably a positive sign, even if they didn't pick apart the other stuff.
 

Dolphin

Senior Member
Messages
17,567
Saw this posted on an ME mailing list. Haven't looked in to it:
NHS National Research Ethics Advisors’ Panel: PACE, SMILE, & CoIs minutes


National Research Ethics Advisors’ Panel PACE minutes [extracts]

https://dl.dropboxusercontent.com/u/89858260/NREAP on PACE.pdf

National Research Ethics Advisors’ Panel SMILE minutes [extracts]

https://dl.dropboxusercontent.com/u/89858260/NREAP on SMILE.pdf

National Research Ethics Advisors’ Panel Conflict of Interests minutes [extracts]

https://dl.dropboxusercontent.com/u/89858260/NREAP on Conflicts of Interest.pdf
 

worldbackwards

Senior Member
Messages
2,051
From a position of not having read it, I'm going to summarize and then someone can tell me how much I got right/wrong.
"Blah, blah, blah, militant patient groups, blah, blah interfering in things they don't understand blah mental health issues blah, insurance company? No, that's fine, professor, blah trebles all round.