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UK ME/CFS Research Collaborative (CMRC) Annual Science Conference 2016

elliepeabody

elliepeabody

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86
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East of England
AndyPR said:
I saw it mentioned on another thread that Hugh Parry(?) claimed that a reason for lack of research was 'patient harassment of researchers' - can anybody confirm this?
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I was watching the stream and I don't know who raised the issue of 'hassle' of researchers but it was mentioned during the MRC presentation. Someone from ME Research UK pointed out that none of their researchers had been subject to 'hassle'. I think the atmosphere was a bit strained at this point with a massive elephant in the room
 
A

AndyPR

Senior Member
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Guiding the lifeboats to safer waters.
Just posted this on AfME's post on Facebook about the report, upvotes there would help if you agree with it.
I understand the issue of "researcher harassment by patients" was brought up as a reason for lack of funding/research in the live stream, something that was dismissed as there being no evidence of by the recent tribunal on the release of PACE data. Please can you confirm the Action for M.E stance on this subject - have Action for M.E. researchers, or researchers known to AfME, ever been the subject of "patient harassment"? If yes, what proof can be shown to back this claim up?
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Also ME Research UK's post as well.
 
Cheshire

Cheshire

Senior Member
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1,129
Esther Crawley's talk

These numbers were shared in a leaflet for AYME if I'm correct, but without any study to back up. Do you know if it's been published since? I'd be particurlarly interested in the criteria used.
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elliepeabody

elliepeabody

Messages
86
Location
East of England
It's pretty scary stuff and a good insight into the way that the 'research' into GET for children is approached. EC said no evidence of harm. Study of mild/moderate who could attend clinic. Children & YP like GET and ask for it, recommended by NICE for adults, need to be certain it is effective for children.

There was a question, which I think I got the gist of - there has been a study which showed children got worse with exercise. EC said not aware of the study but the evidence is that GET is helpful in adults.

The following presentations were on the SA, totally different serious tone. Such a shame the SA research doesn't get the funding that EC seems to be able to capture.
 
Cheshire

Cheshire

Senior Member
Messages
1,129
Fitnet results:

At LTFU there was no difference between the recovery rates for the different treatment strategies (original randomization: FITNET [64%] versus any form of usual care [52.8%]). Per additional month of “pretreatment disease duration,” the odds for recovery were 4% lower (odds ratio: 0.96; 95% confidence interval: 0.93–0.99; P = .016), and per added point on “focus on bodily symptoms” (Body Consciousness Scale) of the mother (0–20 points) the odds for recovery were 11% lower (odds ratio: 0.89; 95% confidence interval: 0.80–0.99; P = .029).
CONCLUSIONS: The short-term effectiveness of Internet-based CBT on adolescent CFS is maintained at LTFU. At LTFU, usual care led to similar recovery rates, although these rates were achieved at a slower pace.
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Weardly same type of spin as in the PACE follow-up study: no difference in the different groups, but they insist the effectiveness of the treament is maintained in conclusion.

http://pediatrics.aappublications.org/content/pediatrics/early/2013/05/08/peds.2012-2007.full.pdf
 
Cinders66

Cinders66

Senior Member
Messages
494
Yes it was hassle from patients that was quoted.

I think it's awful Hugh Parry at 54 mins in the research funding video puts patient hassle of one of 3 reasons why CFS has low research applications. The establishment approach to Cfs and the widespread narrative of it as a treatable behavioural disorder and the historic bias of UK establishment isnt mentiond at all on the other hand. Just us smeared again and the real issues not even entertained, despite a whole hour devoted to the issue of how to get CFS success with large public funders (only 10 mintutes alas devoted to sonya chowdury' s presentation of the sobering world CFS funding report) . Hugh also tried to present that we are not the only neglected ones (not really born out with comparison to comparable illness the AFME report ) and the other general blame was placed on the poor quality of Cfs Applications. ...

Sue waddle from me research uk refuted that their researchers have experienced harassment at all. It's so evident that Hugh is not a clinicIan but a remote MRC figure who attends conferences but doesn't really encounter the sick but when people like this are in charge ...

Anyway no mention of ring fencing as a solution, but review of MRC highlighting etc , although Sonya choudhury did confuse things by saying that the 2012 MRC allocation was in response to a "highlight" rather than RFA so.... Welcome and MRC rep., along with Hugh parry did lots of waffle about how difficult it is to make successful applicatons and tiny measures which might improve the situation in terms of quality of applications etc. Mrc say the community needs to make an effort and be in it to win it?!

In reality we are talking about neglect. The MRC and other funders made its mind up as about CFS years ago and is only just now changing it but isn't prepared to do what is needed in the deeply stigmatised, misrepresented, not well informed, unfavourable environment that is the current UK CFS situation. This is costing patients and families dearly and the state a fortune. If the reasons why we have not research interest are thought to be limited to
1) cfs researchers submitting poor quality applications
2) patients scaring off researchers
3) needing to get off the ground, success breeds success etc

It doesn't leave me with much optimism things will drastically improve soon.
 
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worldbackwards

Senior Member
Messages
2,051
Cinders66 said:
1) cfs researchers submitting poor quality applications
2) patients scaring off researchers
3) needing to get off the ground, success breeds success etc
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1) was exploded years ago when it was revealed by FOI that whenever a biomedical research submission came into the MRC, they dismissed it out of hand.

I can't believe that that culture has disappeared despite the CMRC, as evidenced by the way that the biomed research funded tends not to frighten the horses, in addition to the fact that serious researchers will simply have come to the conclusion that the MRC don't want to know them. But they wouldn't talk about that now.

2) If the research they were doing was any good, no one would get pissed off about it. And allegations of serious abuse were thrown out by the ICO as beyond fanciful.

3) If PACE and the delightful Esther are any indication of the researchers on the job, we're likely to be waiting a bloody long time for that.
 
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