Launch of the UK Research Collaborative

[Dolphin]

Given that most of the UK's biomedical researchers were there and backing this, I think we should give it a chance. The fMRI/memory work, and especially the muscle study sound very interesting, though obviously are yet to be published.

To me, Stephen Holgate's comment about the need to bring in new blood to the field - something he's said at every opportunity in the past too - indicates that he thinks CFS research in general in the UK has been heading in the wrong direction. And we know what direction that was. Biomedical research is really getting going in the States, and Australia, and I think things are beginning to happen here too. Though no doubt biopsychosocial research will continue in force here too.

I haven't given up on it.

Just thought I'd give another perspective on that quote.

Dolphin: I'm assuming that's a response to the SMC News briefing notes, rather than to the main press release?

That isn't from the SMC News briefing notes http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/

but from the main press release (available on the AfME http://www.actionforme.org.uk/Resources/Action for ME/Documents/CMRC launch media statement.pdf and Bristol University sites: http://www.bristol.ac.uk/news/2013/9313.html )

It wasn't in the piece on the Southampton site (of Stephen Holgate) which didn't have the "About Chronic Fatigue Syndrome (CFS)" section:
http://www.southampton.ac.uk/mediacentre/news/2013/apr/13_67.shtml

 

[Simon]

What I meant was that the main press release, page 1 until "ends" didn't include that section, it was in the extra notes on page 2 which I suspect were added by SMC, rather being part of the approved press release (page 1, and what made the Southampton site). That would fit with the rather lopsided perspective presented under 'about CFS', which I doubt got approval from Holgate or UK CMRC (at least I hope it didn't).

 

[Esther12]

What I meant was that the main press release, page 1 until "ends" didn't include that section, it was in the extra notes on page 2 which I suspect were added by SMC, rather being part of the approved press release (page 1, and what made the Southampton site). That would fit with the rather lopsided perspective presented under 'about CFS', which I doubt got approval from Holgate or UK CMRC (at least I hope it didn't).

Hmmm... I wonder what happened there, and who was deciding what.

 

[Firestormm]

Bit more news...

ME Biobank Website and project launch for those who aren't aware: London School of Hygiene and Tropical Medicine:

The UK ME-CFS Biobank


Better recognition, less stigma, improved diagnosis and treatment


Though I'm not certain this was raised at the conference - it should have been! Might need it's own thread I suppose.

 

[Sasha]

Interesting and positive statement from the MEA on why they attended:

http://www.meassociation.org.uk/?p=15236

 

[Simon]

I assume the MEA won't mind me quoting them extensively:

...There were high quality presentations on a wide range of clinical and scientific topics including autonomic dysfunction, inflammation and the immune system, muscle abnormalities and sleep disturbance.

Over 100 UK researchers accepted the invite to attend and there were plenty of new and young researchers there as well. The press coverage in the The Times was extremely positive – concentrating on the new muscle research that was presented by Professor Julia Newton.

How could a charity like The ME Association stand on one side and say: ” No, we do want any part of that”.

The Research Collaborative is a big tent covering a wide range of views on causation, definition, epidemiology and management. We believe it is far better to be inside the tent discussing and debating these issues – as happened during the discussion session on Monday – than sitting outside where we would not have a voice.

The ME Association will be monitoring closely what happens with the Collaborative and we shall not be slow to give constructive evaluations of what is done.

BPS research will continue in the UK regardless, but now it seems to me that biomedical researchers are becoming more of a force in their own right, wheras in the past they have been right on the margins. I think the new UK Collaborative help that process.

 

[Esther12]

I don't think that there's anything wrong with the MEA attending this (I'm assuming that their statement was in response to criticism), so long as they do not have to restrict their advocacy in other ways in order to stay in the tent - I'd rather have an organisation speaking out honestly and publicly on behalf of patients than one that got to enjoy tea with the MRC. It would be interesting to know what happened with the press release though, and who approved what.

 

[sianrecovery]

I guess there is a faint hope that some of the pyschs there may get a glimmer of understanding that their world view is not the only one. Paradigm change takes time, the accumulation of many many pressures and inconsistencies. Those who have built their careers on interpreting ME as a psychological phenomenon will not change; they have invested too much in that interpretation to let it go, and have their little empires built on it. The younger ones, the ones who de facto will get exposure to research that is happening elsewhere in the world, maybe. Or, looking at the past twenty years, maybe not.

 

[Simon]

I've blogged about the launch here: UK CMRC - dawn of a new era?

 

[tatt]

this was a positive step. The politics of ME in the uk are such that they couldn't do something like this without psychiatrists there. However there was also a lot of interesting research on the physical issues and it's good that the psychiatrists see/hear about that.

 

[ukxmrv]

From the charter for the new research collaborative

"3.2.3 Members will be required to sign a declaration that they will not take part in the harassment or abuse of researchers. Neither will they take part in orchestrated campaigns against those conducting peer-reviewed research."

 

[Shell]

ukxmrv To my foggy but very cynical mind, that looks like no criticism will be allowed. If they can label FOI requests as harrassment as they have done it doesn't bode well for open, honest and ethical research does it?

 

[snowathlete]

I don't think that there's anything wrong with the MEA attending this (I'm assuming that their statement was in response to criticism), so long as they do not have to restrict their advocacy in other ways in order to stay in the tent - I'd rather have an organisation speaking out honestly and publicly on behalf of patients than one that got to enjoy tea with the MRC. It would be interesting to know what happened with the press release though, and who approved what.

I think this collaborative is probably a good thing, but these groups surely understand that with the text that went out on page 2 was going to get patient's backs up and was going to lead to criticism. Behind the scenes, the problem might be that the groups involved didnt all know about that and who knows, they could be raising a real grievance about that, I don't know. I'd like to think so, because it makes it look like that is the view of the whole group, which clearly it isn't.

 

[snowathlete]

From the charter for the new research collaborative

"3.2.3 Members will be required to sign a declaration that they will not take part in the harassment or abuse of researchers. Neither will they take part in orchestrated campaigns against those conducting peer-reviewed research."

my bold.
This is the bit that worries me a bit because I see that as an important thing that researchers need to do more - challenge false views about the illness in papers - like the PACE stuff - and this sort of means that this isn't allowed. Who does that leave in the UK to challenge it?
BUT if there is someone left who can challenge it, then great, because what we have gained here is an insight that that kind of challenging of their papers works - they don't like their work being challenged because it exposes it for what it is.

 

[Sasha]

my bold.
This is the bit that worries me a bit because I see that as an important thing that researchers need to do more - challenge false views about the illness in papers - like the PACE stuff - and this sort of means that this isn't allowed. Who does that leave in the UK to challenge it?
BUT if there is someone left who can challenge it, then great, because what we have gained here is an insight that that kind of challenging of their papers works - they don't like their work being challenged because it exposes it for what it is.

Must admit it doesn't worry me. If I was a charity I would love to see someone try to implement that clause against me for making an FOI request or challenging PACE. I would absolutely be thrilled and would be sending my press release out as fast as I possibly could and getting my MP onto it and milking it for every single drop it was worth.

 

[Esther12]

Must admit it doesn't worry me. If I was a charity I would love to see someone try to implement that clause against me for making an FOI request or challenging PACE. I would absolutely be thrilled and would be sending my press release out as fast as I possibly could and getting my MP onto it and milking it for every single drop it was worth.

That was my thought too. All the more reason for those organisations involved to push hard against spin and distortion imo.

There is a danger that patient organisations could slip into docile cowardice to avoid upsetting anyone, but I don't think there's any reason to think that this will necessarily happen.

 

[snowathlete]

Legally there would be no grounds for it, but groups could get kicked out of the collaborative for doing it on the basis of those rules that they have signed up to. That's the issue.

 

[Simon]

"3.2.3 Members will be required to sign a declaration that they will not take part in the harassment or abuse of researchers. Neither will they take part in orchestrated campaigns against those conducting peer-reviewed research."

I think this might be being overinterpreted:

I'm not aware that anyone is suggesting that any of the charities in CMRC are taking part in orchestrated campaigns against those conducting peer-reviewed research - or have ever done so.

I think equating FOI with harrassment was an interpretation of the letter from White et al in the Sunday Independent resonding to Marr, Weir & Hooper (please correct me if I have this wrong). However, Lady Mar has put it on record that Peter White apologised to her over this inference: he said the letter was never intended to imply harassment. Also, none of M, W & H are part of CMRC charities.

I think the key point here is that the CMRC would be the judge of this. If you look at the constitution, the exectuive is made of up 5 researchers, 5 charities and a chair and co-chair. I can't see a majority of this group would ever condider an FOI request to be harassment, particularly given the MRC backs the AllTrials campaign for FULL release of all trial results. The chair is Stephen Holgate, an MRC professor...

Including this phase in the charter does look a bit paranoid, but I can't see it making a difference in practice as no one in CMRC is, or have, indulged in such activity. Note that patients and members are not entitled to join CMRC so it can't be applied to them.

So while it might be fun to see someone argue harassment for attempts to challenge, say, the PACE trial results, it isn't going to happen. Also, in the last couple of years, robustly criticising published research (in a scientific way) has become fashionable again, thank goodness.

 

[Sasha]

Legally there would be no grounds for it, but groups could get kicked out of the collaborative for doing it on the basis of those rules that they have signed up to. That's the issue.

They've signed up not to harrass people. If somebody on that group wants to go public (as they would have to) with the claim that making an FOI request or criticising PACE constitutes harrassment they'll look ridiculous and it will be wonderful. Off to the press release button!

 

[Esther12]

I think equating FOI with harrassment was an interpretation of the letter from White et al in the Sunday Independent resonding to Marr, Weir & Hooper (please correct me if I have this wrong).

From what I remember, there's been a few attempts to lump FOIs in with harassment. The Hawkins BMJ piece carried that implication, as did an SMC piece on CFS. I think that some of the coverage which followed the Hawkins piece mentioned FOIs as an example of harassment too. I've never seen any of the BPS lot acknowledge that it's entirely legitimate for patients to make FOI requests in order to gain access to a better understanding of the value of the treatments available for CFS!

Was there anything like this in the charter?:

Members will be required to sign a declaration that they will not take part in the harassment or abuse of patients or patient groups. Neither will they take part in orchestrated campaigns against those conducting criticism of peer-reviewed research.