Launch of the UK Research Collaborative

[Bob]

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.

I thought they'd already slipped into this mode. Especially Action for ME.

 

[Bob]

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."

I agree with others that this is strange, and looks rather paranoid.
But this clause should not stifle robust criticism of research.
(Ultimately, it's a legal clause, so a court of law would have to consider any actions to be abusive or harassing, etc.)
It's not the same as the clause that Judy Mikovits had to sign up to, for the Lipkin study, whereby she was not allowed to question the resulting research outcomes.

 

[Esther12]

I thought they'd already slipped into this mode. Especially Action for ME.

I'm not sure I see Action for ME as a patient organisation. They've got no accountability to members, many of whom were guided there by the NHS. I was a member for a while just because I was told by a dr it was the best one to join and I didn't bother looking in to it. I think MEA are fine, considering the difficulty of the situation.

 

[snowathlete]

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!

They don't mention FOI as far as I can see. They mention harrasment and then they go on to say this:
"...Neither will they take part in orchestrated campaigns against those conducting peer-reviewed research."
Which goes beyond harrasment - it's very broad. Say a group in the UK wanted to get three or four researchers to put their name on a letter to the editor of a journal pointing out that some claims in some research like that of PACE was not that scientific and was misleading in its use of language, people in this group could not take part in that now, without risking getting kicked out of this collaboration. And if that happened, we can't count on the other side looking ridiculous because they are experienced at twisting these kinds of things and manipulating public perception via the press with things like: "they renayed on the priniciples that the collaborative was built upon, and which they were invovled in drafting at the begining, which was agreed in order to ensure mutal support of each others findings, to maximise the positive impact that the collaborative can have toward progress in this condition. Disapointingly, they are not serious about taking research into this very debilitating condition forward, and remain intent on counterproductive actions that help nobody, and certainly not patients. Nonetheless, the remaining members of the collaborative, which represent the vast majority of research into chronic fatigue syndrome in the UK remain united, and will continue to work hard on taking the science forward in chronic fatigue syndrome."

 

[Valentijn]

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.

It's just saying that going after the researchers isn't allowed ... but attacking the content and quality of the research certainly is allowed.

 

[snowathlete]

It's just saying that going after the researchers isn't allowed ... but attacking the content and quality of the research certainly is allowed.

At what point does it become a campaign against a researcher, though?

I mean, if you criticize the content and quality of a paper that was writen by three authors, you are surely criticizing those three researchers. I think it's quite a broad definition myself.

 

[Valentijn]

I mean, if you criticize the content and quality of a paper that was writen by three authors, you are surely criticizing those three researchers.

No, the research and the researchers are separate entities. Disputing their published work is not "an orchestrated campaign" against them. One member could describe a piece of research produced by another member as a steaming pile of poo and it wouldn't be a personal attack. But campaigning to have another member fired due to their stance would be attacking the researcher, not the research, even if that opinion is based on the quality of their research.

 

[Simon]

At what point does it become a campaign against a researcher, though?
I mean, if you criticize the content and quality of a paper that was writen by three authors, you are surely criticizing those three researchers. I think it's quite a broad definition myself.

That interpretation would be such a broad definition as to make much of science a campaign against researchers. Criticising papers for methodological or logical flaws is a good thing in science.

Something like repeatedly complaining to an institution about one of its researchers on spurious grounds might be seen as attacking a researcher. Damning them as a person or as a researcher in general might be seen that way too. But criticisng specific aspects of a researchers work, or even their overall theory is, well, what science is all about. In fact, a lot of scientists would argue that a lack of such scrutiny is precisely where life sciences have gone in recent years. James Coyne gives a particularly strong expression of this point of view.

 

[Esther12]

What about arguing that, due to problems with the researcher's behaviour, they should not be given further funding?

I think it's nonsense to act as if researchers should not be criticised as individuals. They should just as much as those putting themselves forward as patient representatives, politicians, or anyone else.

I understand snowathlete's concerns, but in practical terms, do not think that this could make things any worse that they were prior to this 'collaboration'.

 

[Sasha]

"...Neither will they take part in orchestrated campaigns against those conducting peer-reviewed research."
Which goes beyond harrasment - it's very broad.

I don't agree it's very broad - it's saying part of an 'orchestrated' (i.e. a conductor directing an enormous group not a few researchers writing a joint letter) 'campaign' (i.e. sustained programme of attack) against people (not research).

And if that happened, we can't count on the other side looking ridiculous because they are experienced at twisting these kinds of things and manipulating public perception via the press

I think there are limits to what they can achieve with that against other scientists - particularly against the majority of collaborators in this group, who I wouldn't expect to sit back silently but to go their own press and professional contacts.

It's frankly a bizarre stipulation to have in a consortium of researchers and charities. If they try to implement it against scientists especially, they'll look insane. Critique by letters to science journals is the absolute, absolute norm in science. Attack that and there's no amount of spin will help you.

 

[Sean]

"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."

Do we patients get a comparable (and enforceable) commitment from researchers, clinicians, insurance companies, politicians, government, media, the general public, etc, about the way they treat us?

 

[user9876]

I think this might be being overinterpreted:

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.

I thought it was a shocking clause to include. I would question the motivation of those pushing for such a clause. Are they accusing other researchers of harrassment or are they using it as a device to exclude certain charities or others from participating or is it simply an attempt by some to avoid critisism? I feel it seems to be a divisive thing to include that is likely to alienate patients due to the over reporting of harassment and under reporting of trail critisism. Hence it is not a good start in pulling together a true collaboration.

We should remember that this clause only binds those members (and not the general public) and hence seems like an acusation.

I would have expected some sort of ethical behaviour clause under which harrassement would come but it would cover the wider ethics expected of researchers. I'm not sure ethical behaviour even needs to be stated explicitly although I would consider the only other restrictions on behaviour as too weak.

​

3.1.4 In matters within the scope of the CMRC, to work collaboratively and in a professional manner​

So currently there is a clause which feels like it might supress critisism but not clauses that for example:
1) Make sure researchers correct mistakes in their papers
2) Make sure researchers don't over claim results in press releases
3) Make sure that additional pieces are not tagged onto the end of press releases

 

[lastgasp]

For some years now, Wessely and the press have been associating FOIs with "harrassment". The journalist Michael Hanlon has now just repeated his vague accusations that ME charities took part in harrassment, maybe orchestrating it. So it's not overinterpreted, these accusations are already being made. The overinterpretation if anything is from the CBT/GET school. It seems a reasonable enough clause on paper, but we know if the holes in their research get rational and well-thought out criticism they'll do what they did to defend the PACE trial -- call it all harrassment.

I don't know if charities like the MEA and IIME will see it that way though. I'd like to think they'll do more FOIs and be bold.

 

[Bob]

Details of the UK CFS/ME research collaborative executive board meeting, 23rd May 2013:
http://www.actionforme.org.uk/Resources/Action for ME/Documents/get-informed/CMRC-discussion-summary.pdf

Looking at some of the individuals and organisations (e.g. BACME) present, I'm not sure if I feel encouraged.

 

[Sasha]

This was just a minor meeting with a bigger attendance expected at others, it says, and they seem to have made some good, get-on-with-it decisions.

 

[Bob]

This was just a minor meeting with a bigger attendance expected at others, it says, and they seem to have made some good, get-on-with-it decisions.

The proof will be in the eating, as they say. (Or do they say that? Did I just make that up?)
Anyway, I'll be watching out for the nature of the research that they organise and fund.
Then we'll know if the project is going to be worthwhile.
I really hope it's going to be transformational, but I'm not encouraged after seeing the list of members.

 

[Sasha]

The proof will be in the eating, as they say. (Or do they say that? Did I just make that up?)
Anyway, I'll be watching out for the nature of the research that they organise and fund.
Then we'll know if the project is going to be worthwhile.
I really hope it's going to be transformation, but I'm not encouraged after seeing the list of members.

Yes, as in, 'the proof of the pudding is in the eating'.

Time will tell and there are some really good people on that list.

 

[snowathlete]

Details of the UK CFS/ME research collaborative executive board meeting, 23rd May 2013:
http://www.actionforme.org.uk/Resources/Action for ME/Documents/get-informed/CMRC-discussion-summary.pdf

Looking at some of the individuals and organisations (e.g. BACME) present, I'm not sure if I feel encouraged.

Interesting. Pleased to see it being raised and interesting to find out who wrote that bit.:
Some of the charities received negative feedback regarding some aspects of the
press release and the notes to editors prepared by Bristol University. It was
acknowledged that there are differences in some areas such as prevalence rates
and that we need to produce information that best reflects the range of positions for
future use. SC has coordinated a teleconference for the charities to discuss this and
to prepare a draft for approval by the Board. It was reiterated that there was not an
expectation that independent positions should be compromised.

 

[Esther12]

Hmmm... I'm not sure it was prevalence rates which were the problem.

Reading that, I didn't feel enthusiastic about this. It would be good if there could be some pressure through this group for White to release the PACE data in the manner they had laid out in their protocol before he starts sucking up more funding.

 

[Sasha]

Excellent piece from ME Research UK on the launch of the collaborative:

http://www.meresearch.org.uk/researchcollaborative.html

In particular, this (my bold):

Statement by Jan McKendrick on behalf of the Trustees of ME Research UK

Jan McKendrick

ME Research UK is pleased to be one of the founding charity members of the ME/CFS Research Collaborative launched on April 22nd. The simple aim of any research collaborative is to raise the profile of research in a particular field, and ME/CFS needs this more than any other disease. Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.

Membership of the Collaborative increases the opportunities we have to engage directly with researchers working in ME/CFS, and with other charities working towards similar ends. Importantly, it lets us draw attention to the need for high quality scientific investigation, and to be a standard bearer for biomedical research to unravel the causes of the disease. Now that the launch has occurred and the process is underway, our short-to-medium term focus can be on pursuing some of the objectives of the Collaborative Charter, such as increasing collaboration between research groups, attracting ‘new blood’ research professionals into the field, and presenting a united front when engaging major funding bodies like the Medical Research Council which hold the bulk of the funding resources.

Of course, ME Research UK will continue to fulfil its core function – the commissioning and funding of scientific research projects across the world. To date, we have funded 35 distinct biomedical studies totalling almost £1 million and resulting in over 50 research papers, and these studies have helped to further the understanding of the disease. Our success to date has been built on providing ‘seed corn’ funding to support researchers at early stages of their investigations, so they can acquire the pilot data needed for grant applications to major national funding agencies. Examples of our significant successes include the work at Newcastle University, which led to a large award from the MRC; the long-term programme at the University of Dundee which has uncovered a range of biochemical anomalies; and the wide-ranging ongoing programme at Vrije Universiteit Brussels. In each case, initial funding by ME Research UK has led to findings which have attracted funding from other sources. Imagine what could be achieved with greater resources and a more vibrant research base.

The Trustees of ME Research UK wish the ME/CFS Research Collaborative well in its quest to raise the profile of research across the board. It is because we are all people directly affected by ME/CFS – either as patients, family members or friends – that we welcome this attempt to dramatically alter the research landscape to the benefit of ME/CFS patients everywhere.