ME Research UK withdraw from UK CFS/ME Research Collaborative

lilpink

Senior Member
Messages
986
Likes
5,797
Location
UK
As you don't think they deserve thanks that absolutely makes sense for you.
No they don't. I'm glad they've seen sense, definitely. But thanking someone for stopping doing something bad is not my MO. Especially when their statement in no way apologised for that action. It wouldn't take much for them to say 'sorry we got it really wrong'. But they haven't. Until then, whilst I'm happy they have left, I won't be resuming my support of them financially. I won't go into details, but my family have sweated to raise funds for them in the past. I feel their lack of acknowledgement that they didn't listen to the very population they are organised to support is, as Jane Austen would have it: 'badly done'. They have time to redeem themselves but they didn't hit the ground running with that statement. Why do we accept such crumbs with glee? It's victim behaviour... we've got to stop it.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,045
Likes
6,039
Location
UK
Who/what advises the U.K. Government on CFS/ME?
One individual who advises the DoH is Rona Moss-Morris, who is National Advisor to the Department of Health for IAPT (Improving Access to Psychological Therapies) for LTC/MUS which has been extended to include making funds available for developing integrated IAPT services for long-term conditions and CFS.

Page 3: https://www.england.nhs.uk/wp-content/uploads/2016/12/mental-health-call-to-bid.pdf

https://www.england.nhs.uk/mental-health/adults/iapt/mus/sites/
 

AndyPR

Senior Member
Messages
2,516
Likes
18,188
Location
Guiding the lifeboats to safer waters.
No they don't. I'm glad they've seen sense, definitely. But thanking someone for stopping doing something bad is not my MO. Especially when their statement in no way apologised for that action. It wouldn't take much for them to say 'sorry we got it really wrong'. But they haven't. Until then, whilst I'm happy they have left, I won't be resuming my support of them financially. I won't go into details, but my family have sweated to raise funds for them in the past. I feel their lack of acknowledgement that they didn't listen to the very population they are organised to support is, as Jane Austen would have it: 'badly done'. They have time to redeem themselves but they didn't hit the ground running with that statement. Why do we accept such crumbs with glee? It's victim behaviour... we've got to stop it.
You've got your reasons and that's fine. Personally, I prefer to reward "good" behaviour to encourage further "good" behaviour but each to their own. And I would refute that their act of withdrawing from the CMRC is merely a crumb - with any luck it's the start of the CMRC being shown to be valueless in the ME research world and increased collaboration between those doing worthwhile ME science. And "victim behaviour" or realism? If we don't work towards something more and merely accept what is given then possibly it's "victim behaviour", but I personally am working towards more, so view this as a useful stepping stone towards a better future.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,045
Likes
6,039
Location
UK
...And I would refute that their act of withdrawing from the CMRC is merely a crumb - with any luck it's the start of the CMRC being shown to be valueless in the ME research world and increased collaboration between those doing worthwhile ME science.
Only if the ME Association were to pull out, too, together with a significant number of the researcher CMRC members:

Dr Mark Edwards (University College London), received funding from MRC
Dr Zoe Gotts (University of Northumbria),
Professor Paul Little (University of Southampton), colleague of Holgate
Professor Julia Newton (University of Newcastle), received funding from MRC
Professor Carmine Pariante (King’s College London), received funding from MRC
Professor Hugh Perry (Chair of Neurosciences Board, MRC),
Professor Chris Ponting (Deputy Director of Functional Genomics Unit, MRC).

How many of the above are going to want to upset Holgate and the MRC?
 

lilpink

Senior Member
Messages
986
Likes
5,797
Location
UK
You've got your reasons and that's fine. Personally, I prefer to reward "good" behaviour to encourage further "good" behaviour but each to their own. And I would refute that their act of withdrawing from the CMRC is merely a crumb - with any luck it's the start of the CMRC being shown to be valueless in the ME research world and increased collaboration between those doing worthwhile ME science. And "victim behaviour" or realism? If we don't work towards something more and merely accept what is given then possibly it's "victim behaviour", but I personally am working towards more, so view this as a useful stepping stone towards a better future.
I think different people view the same thing through a different prism. I'm working towards more, do not underestimate that. . I just do it to the beat of a different drum I suppose.
 

MEMum

Senior Member
Messages
440
Likes
2,251
One individual who advises the DoH is Rona Moss-Morris, who is National Advisor to the Department of Health for IAPT (Improving Access to Psychological Therapies) for LTC/MUS which has been extended to include making funds available for developing integrated IAPT services for long-term conditions and CFS.

Page 3: https://www.england.nhs.uk/wp-content/uploads/2016/12/mental-health-call-to-bid.pdf

https://www.england.nhs.uk/mental-health/adults/iapt/mus/sites/
AAAAaaaaarrrrrrGH!:mad::mad::mad::mad::mad::mad::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::aghhh::aghhh::aghhh::aghhh::aghhh::eek::eek::eek:
 

Valentijn

Senior Member
Messages
15,786
Likes
45,600
This is a systematic failure to engage with science, and to understand the science.
NICE was even happy to have a blatantly flawed summary of PACE's long-term followup published on their site by an employee who had previously said abusive things about ME patients. As far as I know, it still claims that "gains were maintained" for CBT/GET patients, instead of the actual results that CBT/GET patients were doing no better than controls at that point.

If the old organisation is rotten beyond repair, then better it disbands, and something new and much better is created instead. Just need to be sure the rotten bits of the old setup get nowhere near the new one ... not quite sure how that could be ensured.
Putting "ME" in the name, but not "CFS" might help ... they seem to have a phobia of the name Myalgic Encephalomyelitis :cool:
 

Chrisb

Senior Member
Messages
1,051
Likes
5,286
One individual who advises the DoH is Rona Moss-Morris, who is National Advisor to the Department of Health for IAPT (Improving Access to Psychological Therapies) for LTC/MUS which has been extended to include making funds available for developing integrated IAPT services for long-term conditions and CFS.
I thought new techniques had mastered the art of the mnemonic. Shouldn't that have been "ImproviNg Access to Psychological Therapies"-INAPT?
 

Barry53

Senior Member
Messages
2,391
Likes
13,643
Location
UK
Its as though the Age of Reason is a myth. We are still steeped in magical thinking.
Snap! I was just pondering earlier this morning that there was a time in history when mythology was as solid a foundation for most people's lives as science is today. Then it struck me that when you think of PACE, and the BPS brigade's perceptions and projections of ME ... nothing has really changed that much.
 

Barry53

Senior Member
Messages
2,391
Likes
13,643
Location
UK

Demepivo

Dolores Abernathy
Messages
411
Likes
2,247
A note about Prof Julia Newton & MERUK. Prof Newton has been one of the main beneficiaries of MERUK grants and done useful biomedical science with the money from MERUK, the MEA and AfME (on the autonomic nervous system, the heart & vascular systems, build up of lactic acid after exercise)

Although Prof Newton is chief medical adviser for AfME, she seems to work more with MERUK. (MERUK have a Newcastle Uni email address & I believe an office there).

You're probably thinking why doesn't she speak out publicly about X, Y & Z. She does privately within medical circles.

She has enough power & influence in her own NHS Trust to dictate how money is spent there.
 

Demepivo

Dolores Abernathy
Messages
411
Likes
2,247
What if the rotten bits just carry on with the SMC firmly inside it and bring in more charlatons under Holgate?
The SMC's man Ed Sykes has been part of the problem in recent weeks. He encouraged Holgate to issue the "full backing of the board to Queen EC.

He is supposed to be an observer, but is a meddler.

Was it him who wrote the press releases about the alleged harassment to Simon Wessely 5 years ago?

Thinking about writing letter of complaint to SMC Head Fiona Fox about Sykes's behaviour.
 

sarah darwins

I told you I was ill
Messages
2,508
Likes
10,440
Location
Cornwall, UK
Thinking about writing letter of complaint to SMC Head Fiona Fox about Sykes's behaviour.
Go for it, but Fox has a track record that inspires zero confidence (and explains a lot re British media coverage of science).

Fox has used the Science Media Centre to promote the views of industry and to launch fierce attacks against those who question them. She ran the campaign, for example, to rubbish last year’s BBC drama Fields of Gold.
from George Monbiot: http://www.monbiot.com/2003/12/09/invasion-of-the-entryists/

George M has written a lot about Fox and others in a highly influential clique in the London-based media.

Fox has form on climate change, not to mention the Rwandan genocide ... she's not someone I would look to for commitment to truth. She's a very politicised individual, and while I don't know her views on ME I'd be willing to hazard a guess.
 

Esther12

Senior Member
Messages
13,774
Likes
28,350
The SMC's man Ed Sykes has been part of the problem in recent weeks. He encouraged Holgate to issue the "full backing of the board to Queen EC.

He is supposed to be an observer, but is a meddler.

Was it him who wrote the press releases about the alleged harassment to Simon Wessely 5 years ago?

Thinking about writing letter of complaint to SMC Head Fiona Fox about Sykes's behaviour.
That's interesting to know. It would be good to get more info on that. Sykes is so loathesome. Nearly as bad as Fox! Not sure she'll be concerned about his behaviour, but it would be good to get a public record of who was doing what, and why.