UK Research Collaborative means business

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by Simon McGrath

Prof Stephen Holgate

The new UK CFS/ME Research Collaborative has had its first meeting and it very much looks like it means business. They have plans to rev up the research agenda and raise funds - and they have key players on board too.


The Players

The CMRC is chaired by Stephen Holgate, MRC professor of Immunopharmacology at Southampton, with Dr Esther Crawley as vice chair. There are then five charities and five further researchers to complete the Executive Board.

So far Professors Julia Newton (Autonomic system & fatigue), Hugh Perry (Neuropathology), Paul Little (Primary Care Research), and Peter White (Psychiatry) have been appointed, with one more to follow. I don't know the views of all the researchers, but that looks to me like a greater emphasis on the biomedical than the biopsychosocial.

Hugh Perry is a particularly interesting member as his research is on links between inflammation, the brain and disease. He was on the former MRC ME/CFS Expert group and is Chair of the MRC's Neuroscience and Mental Health (funding) Board. That's a very useful person to have onside.

The five charities are the ME Association (Dr Charles Shepherd), Action for ME (Sonya Chowdhury, chief executive), the CFS Research Foundation (Clive Kerfoot), Association for Young People with ME (Mary-Jane Willows) and ME Research UK (Dr Neil Abbott/Sue Waddle).

There are several official Observers too, which helpfully includes the three main funders of research in the UK: The Medical Research Council (MRC), the National Institute of Health Research and The Wellcome Trust. The MRC were represented by Joe McNamara, Programme Manager for the Population Science and Public Health Board, who went out of his way to offer support to the group, including resources for a planned AGM. The other funding Observers, along with the researcher Executive members, sent apologies, but are expecting to be present at future meetings.

Also as Observers are BACME, representing clinicians, and Ed Sykes for the Science Media Centre (SMC). The presence of the SMC is very much part of the broad church approach, as they have promoted a biopsychosocial view of ME/CFS up till now. However, Charles Shepherd did raise concerns with Ed Sykes about the way the SMC has presented ME/CFS research, so it does represent an opportunity for a dialogue.

The Collaborative would also like to have parliamentary input and this will be discussed with the All Party Parliamentary Group.

Action for ME are providing the secretariat for the CMRC, which has been funded by one of their donors who has been very impressed by the work of the CMRC. Administrative support is not usually seen as an exciting thing to fund, but I think that's a smart move by the donor.

Why it's critical for the ME Association to be in the Collaborative​

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Charles Shepherd explains why the MEA is taking a seat at the top table of the CMRC to argue for more biomedical research and clinical trials:​

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"The CMRC is a very big (and potentially extremely powerful) tent with prominent people from a whole spectrum of opinion on causation and management of ME/CFS actively involved ... part of the research agenda has to involve sitting down and discussing/debating with people you may not always agree with.​

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Would it be better for people with ME/CFS if we were not forming part of the Executive (remember the charities have five seats here - as do the researchers) of a multidisciplinary research organisation that involves almost all the established UK ME/CFS research groups, as well as new/young researchers, people from the MRC, NIHR, other major funding bodies, politicians from the APPG on ME at Westminster, and (in due course) the pharmaceutical industry? We would be letting down our members if we opted out."​

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Fulll version at the ME Association​

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Getting down to work: Funding and more

The Collaborative is setting up four 'Workstreams' to get things done. Little was said about three of them - Publicity & Awareness, Increasing Capacity, and Organisation (presumably more will emerge on this in future) but there were some significant developments regarding funding priorities.


Funding priorities: severely-affected and sub-grouping

The Collaborative wants to stimulate more funding for research and support a strategic approach for future funding. Stephen Holgate has said that fundraising will be a priority. It's quite possible that the UK Research Collaborative - backed by almost all the ME charities and all the main researchers - could pull in new and wealthy donors. Parkinson's research was revolutionised by a donation of £5 million - wouldn't it be nice if something like that came out of this initiative? (I do like to dream).

The MRC has already identified four priority areas including immune dysfunction and neuropathology, but the Collaborative has now also prioritised severely-affected patients and epidemiology (including sub grouping/phenotyping). Great to see the severely-affected (and severely-neglected) getting attention in research. The Board even discussed having ‘severely affected’ as a separate workstream, but it was better as a research priority to ensure that activity was cross-cutting and that the focus is on increasing funding to enable more research into this area.

Obviously this new approach brings the risk of the CMRC competing with individiual charities for funds so those involved are approaching this with some caution. Signing up to the research priorities "would in no way undermine the charities’ independence with regard to their own research activities". And it was agreed that all charities would provide a summary of their research priorities by the end of June to identify where the differences and alignments exist. Action for M.E. are asking for views to inform their research strategy as well as the priorities they will put forward to the Collaborative - you can take the AfME survey here.

As well as specific areas for research, the Collaborative might look at studentships, joint fellowships and bursaries to increase access to research in the field for early career researchers.

On the subject of research funding, both the ME Association and ME Research UK are both hoping to win for up to £2,000 in 'The Big Break'.


Dealing with the first spat

Given its 'Big Tent' make up, there are bound to be disagreements in the CMRC - and it looks like the first one has already taken place over the launch press release:

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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 [my note: this probably also refers to background notes included with the press release emphasing the role of psychological factors]. Sonya Chowdhury 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.​

I think the significance of this is not in the specifics of the press release, but in the fact that the problem was recognised - rather than swept under the carpet - and is apparently being dealt with constructively. If the CMRC is to succeed, I suspect there will need to be a lot more of this constructive work in future.


Big Pharma takes an interest

An unnamed pharmaceutical company has expressed an interest in working with the Collaborative and will be asked to show "what value they would create and what they could contribute to support the workstreams, especially with a focus on funding" ( , my italics).


Annual conference

There will be an annual event for researchers which could provide a combination of learning and development through showcasing research projects, as well as time to develop collaborations on new projects.

So: the Research Collaborative looks like it's going to make an impact. Charles Shepherd described it as "a very big and potentially extremely powerful tent". Sonya Chowhury is positive too: "As a group, we are committed to action; to making a real difference and enhancing work in the research field ... It’s such an exciting time at the moment and it’s essential that we work collaboratively to leverage the potential and create even more capacity than we would by working on our own".

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There is something here I did not see before, a politically very astute move - at least potentially. If White and others with similar views are involved in the process, then they have a political/academic out for their past research. See, we are reformed, we help solve the puzzle. Its a face saving measure, and may make very big change in how ME is viewed more politically acceptable.

Perhaps they could use the collaborative to help them save face... But it's actually very easy for them to save face... Stop claiming that CFS/ME is perpetuated (i.e. caused) by cognitive-behavioural factors... Start saying that CFS/ME is a biomedical problem that needs a biomedical solution... Stop promoting CBT/GET as restorative treatments... Start promoting CBT/GET only as simple coping strategies, or symptom management strategies, that only help a very small minority of patients, and that do not improve disability... Stop getting in the way of serious biomedical research...

 

I'd be amazed if a condition like CFS could be entirely unaffected by 'psychosocial factors'... but that doesn't make the spin and manipulation of data engaged in by White any more acceptable. Even if CFS were entirely the result of cognitive and behavioural problems, White would still be a quack, and his membership of this collaborative would do nothing to change that.

 

CaronR, I share many of your concerns, but this collaborative comes off the back of the MRC CFS/ME expert group, which had some of the same members, and which was also set up and chaired by Prof Stephen Holgate. And, in my opinion, the MRC expert group was a raving success, and absolutely transformed the way the MRC dealt with ME/CFS.

You can see the research that the expert group managed to get funded here:
http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm#P97_6648
(Look at the list of "Currently funded projects", which came about after the expert group was formed. The "Recently completed projects" were organised prior to the expert group.)

So I have some hope.

Bob, I understand the arguements in favour of the Collaborative and I too have hope for it to succeed, I just don't have much confidence that it won't be used as a weapon by the psychiatrists.

Here's to a happy, successful and enlightening outcome!!

 

An astute move for this twelve yearer - can't deny the volume of medical/scientific findings now. Who would have thought Gerada (Chair RCGPs) would ever have attended the recent Iime conference before.

Medicine does indeed have it's own politics (4 in my family often very selective.......always selective especially now they know the crux is immune abnormalities, but then of course they keep up with real science).

 

.... I dearly hope I'm proved wrong, but I fear this collaborative will merely give credibility to Peter White and Esther Crawley's research and beliefs and help to further their agenda, whilst dumbing down the biomedical position. I wonder how long it will take for White and Crawley to start discussing their research, beliefs and positions in the same breath as the 'Collaborative'. They have the ear of the media (and very much so of the SMC), the government, the MRC, NICE and GPs and now they can claim to be part of a collaborative, endorsed by most of the ME patient groups and charities. Am I the only one to see a very alarming danger to this?

The alarm bells rang loud and clear for me with the launch press release, which highlighted psychological factors and absurdly inflated prevalence rates, which I assume were based on Esther Crawley's (very limited) research, which was studying chronic fatigue rather than ME, or even CFS. This may have been queried by such as MEA and will supposedly be discussed, but to be quite honest, the damage has been done as it has already been reported on and is in circulation. It's extremely difficult to withdraw damaging comments and I suspect nothing will be released to rectify the inaccurate information. Will this be the only time inaccurate and damaging information is released by the 'Collaborative'? With Crawley and White on the executive, I very much doubt it.

The collaborative is very definitiely not about endorsing the position of any researcher's research or position, and I think anyone trying to claim such endoresement would get slapped down. That's why I think it was healthy that the press release problem was discussed. If such things happen again I would expect there would be a fight. I'm pretty sure that the misleading notes in the press release were not quoted or used in any coverage - please say if that's not the case, so I don't think there's any harm done on this occaision. (And I don't think a press release has any shelf-life beyond the immediate time it's issued.)

However, only time will tell how this pans out, but I think all the charities involved will be vigilant.

I do agree that sometimes one has to get around a table with people you disagree with and I think that there is a lot of truth in keeping 'friends close, and enemies closer', but I also believe that there are times to take a principled stand. I'm more inclinded to believe that if the major patient groups and charities stood together and refused to share a platform with the psychiatrists who believe ME is a psychological condition, it would alientate the psychiatrists rather than stimie research into biomedical research.

I think the problem is that there is never going to be an alternative research collaborative, with no psychological involvement - at least not one that the MRC and other big funders will turn up to and support. As a result of Stephen Holgate's efforts, and the predecessor MRC CFS/ME Expert group the MRC committed £1.5m to biomedical ME/CFS research for the first time - and has a new highlight out now asking for more research proposals. One of the areas highlighted is neuropathology: CMRC board member Hugh Perry is a professor of Neurpathology - and chair of the MRC's Neuroscience and Mental Health funding board. That bodes well for the future, and I don't think we'd be seeing anything like this if there wasn't a broad church approach including all researchers.

In the past, biopsychosocial reearchers have dominated the CFS research agenda in the UK, and enjoyed the lion's share of funding. I think that will change with the new collaborative.

 

Yep they are a nightmare Simon I agree - the creepy crawlies and Whites of this world. Still I do believe some attempt to flush out all that has held us (UK) back by "dining with the devil" may be needed.

I feel I can freely call the whole psycho brigade "devils" having groped my way out of A & E where 3 Docs and a psychiatrist pronounced "all in your mind".

 

Perhaps they could use the collaborative to help them save face... But it's actually very easy for them to save face... Stop claiming that CFS/ME is perpetuated (i.e. caused) by cognitive-behavioural factors... Start saying that CFS/ME is a biomedical problem that needs a biomedical solution... Stop promoting CBT/GET as restorative treatments... Start promoting CBT/GET only as simple coping strategies, or symptom management strategies, that only help a very small minority of patients, and that do not improve disability... Stop getting in the way of serious biomedical research...

But thats hard to do if your career is fully based on poor "science", there is almost nowhere to retreat to. Being part of a collaboration might mean they can do it without the career and personal costs involved. Maybe.

 

I'd be amazed if a condition like CFS could be entirely unaffected by 'psychosocial factors'... but that doesn't make the spin and manipulation of data engaged in by White any more acceptable. Even if CFS were entirely the result of cognitive and behavioural problems, White would still be a quack, and his membership of this collaborative would do nothing to change that.

I am going to be asking these very things in my book. A strong case can be made its all pseudoscience, and doctors practicing pseudoscience are .... ?

 

@ Esther - psychosocial - you must be joking - where is your evidence. Now some evidence in families (genetic predisposition) yes as in my own highly likely - not abused in childhood etc and frankly happily all different personalties. When will this stupidity end.

 

@ Esther - psychosocial - you must be joking - where is your evidence.

Enid , I think I know what Esther12 is saying/implying, but she can correct me if I am wrong - and some of this elaboration is probably just my view. First of all "psychosocial" is more a psych buzzword than anything else, which is why Esther put it in inverted commas. The other issue is that all it says, traditionally, is that medical outcomes are associated with social and psychological factors. That is hard to dispute.

However what they want to promote is the view that psychosocial factors cause disease, rather than influence it. There is as yet no objective evidence of that. It is however interesting to refer to White's Biopsychosocial Medicine and other discussions of peptic ulcers (see my blog) , in which social practices such as overcrowding, smoking and eating refined wheat are linked to a rise in peptic ulcers, though many of those details were not elaborated on in White's book. These are factors that increase risk of contracting H. pylori, but involve both social and behavioural factors. So they influence outcome, but they do not cause outcome. Its the causal stuff that is irrational, unfounded, and promoted as though it were science. Thats why I call it psychobabble (which is a term I will blog on later) and think is probably pseudoscience, right up there with Astrology and Alchemy.

 

Appreciate what you are saying alex but the so called psychosocial is perfectly obvious to ordinary people without a grand title - we are after all sentient (well now and again) human - feeling thinking beings. It does not take science. Illness (cause of does).

 

why are psychiatrists involved ? this is not a psychiatric illness. These psychiatrists are the very reason ME patients are not taken seriously, are laughed at, scorned and mocked by the general public, stigmatised by society, given bogus psychiatric treatments, children with ME forcefully removed from parents and imprisoned in psychiatric hospitals, ME patient deaths.

There are plenty of medical doctors and (biological) scientific researchers in Britain who could be on the panel instead of psychiatrists. The presence of psychiatrists will be a source of tension. They will oppose biological findings, and proposals to investigate biological abnormalities, dysfunctions and coexisting infections in ME. There is a high probability that tensions will lead to one group / researcher leaving, then another, and another, etc..

Can this research collaborative as it calls itself decide on the following which are of fundamental importance to ME research

- the name to be used ? will it be ME or Chronic Fatigue Syndrome (CFS) ? The term Chronic Fatigue Syndrome is actively used to mock, scorn, slander, belittle and insult patients. And if it is chronic fatigue syndrome, then the same (false) logic could be used to call diabetes 'chronic thirst syndrome', call amemia 'chronic weakness syndrome', call cancer 'chronic tiredness and pain syndrome', etc.. Using proper logic, ME should be the only name used, as it is scientifically and medically correct and could not be used to mock, scorn, slander, belittle and insult ME patients.

- which definitions will be used ? will it be the old outdated CDC 1994 criteria which has led to excess heterogeneity, non-ME patients being diagnosed and recruited, and contradictory research findings. Or the Oxford criteria, London criteria, NICE criteria, which have the same defects as CDC 1994. Or will it be the up to date and more accurate Canadian Consensus Criteria (2003) and ICC (2011) ?

- will people continue to presume that there are no biomarkers for ME ? and will this presumption be used to undermine and confuse research ? or will they admit that biomarkers actually exist, some of these biomarkers are mentioned on www.cfs-ireland.com/structure.htm#8 . By the way, psychiatry has no biomarkers, and relies on assumptions, opinions and presumptions.

- will pharmaceutical companies use Canadian Consensus Criteria (2003) and ICC (2011) and biomarkers to properly recruit and assess ME patients in research projects and clinical trials ?

- how will research be prioritised ? what research is necessary to build a structure of causation instead of an analysis of some secondary symptoms ?

 

Just had a quick look at the link for Prof. Paul Little. The 2nd and 3rd most recent publications are with Rona Moss-Morris, major ("grade A") psychobabbler:
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Everitt, Hazel, Moss-Morris, Rona, Sibelli, Alice, Tapp, Laura, Coleman, Nicholas, Yardley, Lucy,Smith, Peter and Little, Paul (2013) Management of irritable bowel syndrome in primary care: the results of an exploratory randomised controlled trial of mebeverine, methylcellulose, placebo and a self-management website. BMC Gastroenterology, 13, (68) (doi:10.1186/1471-230X-13-68).(PMID:23602047).

Dima, Alexandra, Lewith, George T., Little, Paul S., Moss-Morris, Rona, Foster, Nadine E. andBishop, Felicity L. (2013) Identifying patients’ beliefs about treatments for chronic low back pain: a focus group study. British Journal of General Practice (In Press).

Everitt, Hazel A., Moss-Morris, Rona E., Sibelli, Alice, Tapp, Laura, Coleman, Nicholas S., Yardley, Lucy, Smith, Peter W. and Little, Paul S. (2010) Management of irritable bowel syndrome in primary care: feasibility randomised controlled trial of mebeverine, methylcellulose, placebo and a patient self-management cognitive behavioural therapy website (MIBS trial). BMC Gastroenterology, 10, (136)(doi:10.1186/1471-230X-10-136 ).

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http://www.southampton.ac.uk/medicine/about/staff/psl3.page#research

Research Interests

Two main areas of interest: health promotion and the management of common self-limiting illnesses. These topics link evidence about effectiveness with the effect of management of patient beliefs and behaviour, better understanding the importance of the patient centred approach to the consultation.

<snip>

Don't know anything more about him.

 

Ta D. Not a good sign. Moss-Morris is responsible for some of the worst recent stuff to come from the UK. I wonder how Little got into this group.

 

Appreciate what you are saying alex but the so called psychosocial is perfectly obvious to ordinary people without a grand title - we are after all sentient (well now and again) human - feeling thinking beings. It does not take science. Illness (cause of does).

You are completely right this Enid. The entire psychosocial claim is stating the obvious without adding much to the debate that I can see. Indeed its often used as a smokescreen for proponents of psychogenic hypotheses.

 

why are psychiatrists involved ? this is not a psychiatric illness. These psychiatrists are the very reason ME patients are not taken seriously, are laughed at, scorned and mocked by the general public, stigmatised by society, given bogus psychiatric treatments, children with ME forcefully removed from parents and imprisoned in psychiatric hospitals, ME patient deaths.

Unfortunately conventional medical wisdom since 1970 often regards it as a psychiatric illness. Most doctors are largely or almost completely unaware of the biomedical science in ME. Psychiatry is taken far too seriously, its a hodgepodge of unproven hypotheses for the most part, but due to its involvement with the rest of medicine is taken along for the ride and given undue privilege.

The analogy I have used for some time gives us two strategies. The first is to apply the accelerator to ME research, and develop and promote the science until most doctors know enough to figure things out. The other is to apply the brake to psychobabble, unfounded psychiatry with evidence based primarily on fancy rhetoric and misdirected studies. Most advocates tend to do one or the other ... they are very different areas to operate in. I have struggled with this for years: science geeks have problems with politics.

One idea I am working with is that psychogenic babble is protected by medicine because medicine needs psychiatry; psychiatry is fundamentally flawed for the most part, and any attack on psychogenic babble will expose the whole of psychiatry. Rather than seek good science they close ranks, use obsolete and dubious research methodologies, and do not properly discuss the issues. They are worried that medicine will be brought into disrepute. However my view is that failed psychiatric diagnoses and research will bring far more disrepute, distrust and hostility to medicine than any other option. Psychiatry needs to get out of the nineteenth century and enter the 21st century.

Most people are completely unaware of the horrors that psychiatry has unleashed upon the world, the history of psychiatry is rarely discussed. In my view there may be almost as many in psychiatry who are guilty of crimes against humanity as in war. Hundreds of thousands of patients were abused throughout the nineteenth and twentieth centuries. Why are we allowing procedures, methodologies and guidelines that continue to permit that? The cure rate in psychiatry is abysmal, its mainly about management. Yet how can you manage and research disease when the diagnoses are problematic to start with?

 

Just had a quick look at the link for Prof. Paul Little. The 2nd and 3rd most recent publications are with Rona Moss-Morris...

That is not good news. Re publications, he was the senior author on the IBS papers (first one just a protocol). Nb this is the pilot study, and the self-management website uses CBT:
BMC Gastroenterology | Full text | Management of irritable bowel syndrome in primary care: the results of an exploratory randomised controlled trial of mebeverine, methylcellulose, placebo and a self-management website

Primary outcomes (IBS SS and IBS QOL) did not reach significance at 6 or 12 weeks, apart from IBS SSS being lower in the no-website group at 6 weeks - this disappeared by 12 weeks.

This exploratory study demonstrates feasibility and high follow-up rates and provides information for a larger trial.

So they plan to go ahead, apparently with some tweaking to the website CBT. I think it's fair to put him in the BPS camp. That would make 3 of 6 researchers, with one more still to be appointed - according to the minutes they are looking for a nurse. Perhaps they have someone from the FINE trial in mind.

 

why are psychiatrists involved ?
.... There is a high probability that tensions will lead to one group / researcher leaving, then another, and another, etc..

Because it sets out to be a broad church. Without that, there would be no Stephen Holgate, and no involvement from the big funders. Biomedical researchers such as Julia Newton could have chosen to set up their own collaborative but chose to join the CMRC, presumably because they think that, overall it will help.

There are bound to be a lot of tensions, though...

Can this research collaborative as it calls itself decide on the following which are of fundamental importance to ME research

- the name to be used ? will it be ME or Chronic Fatigue Syndrome (CFS) ? The term Chronic Fatigue Syndrome is actively used to mock, scorn, slander, belittle and insult patients. And if it is chronic fatigue syndrome, then the same (false) logic could be used to call diabetes 'chronic thirst syndrome', call amemia 'chronic weakness syndrome', call cancer 'chronic tiredness and pain syndrome', etc.. Using proper logic, ME should be the only name used, as it is scientifically and medically correct and could not be used to mock, scorn, slander, belittle and insult ME patients.

- which definitions will be used ? will it be the old outdated CDC 1994 criteria which has led to excess heterogeneity, non-ME patients being diagnosed and recruited, and contradictory research findings. Or the Oxford criteria, London criteria, NICE criteria, which have the same defects as CDC 1994. Or will it be the up to date and more accurate Canadian Consensus Criteria (2003) and ICC (2011) ?

- will people continue to presume that there are no biomarkers for ME ? and will this presumption be used to undermine and confuse research ? or will they admit that biomarkers actually exist, some of these biomarkers are mentioned on www.cfs-ireland.com/structure.htm#8 . By the way, psychiatry has no biomarkers, and relies on assumptions, opinions and presumptions.

- will pharmaceutical companies use Canadian Consensus Criteria (2003) and ICC (2011) and biomarkers to properly recruit and assess ME patients in research projects and clinical trials ?

- how will research be prioritised ? what research is necessary to build a structure of causation instead of an analysis of some secondary symptoms ?

They have already identified 'severely-affected' as one priority, a group that has received almost no attention from any type of researcher.

Also, and perhaps critically, they highlight subgrouping/subphenotyping as a priority. That would lead away from a blanket CFS/ME designation to specific groups, which may or may not end up as 'ME' and 'CFS', depending on the research. The large CDC study in the states involving the likes of Dan Peterson and Nancy Klimas will hopefully throw light on this too, but I think it's good the UK does something too. There again, the MRC's Research Strategy report in 2003(?) also highlighted the importance of subtyping (think they thought it the biggest priority), and the need to look at the severely-affected but unfortunately nothing came of it.

Didn't see any biomarkers in your link. If anyone has evidence of robustly-replicated biomarkers that can reliably separate CFS from controls (ideally sick controls, eg those with major depression), I would love to see it. I suspect better subgrouping will go hand-in-hand with developing robust biomarkers given the huge heterogeneity in the patient population.

 

That is not good news. Re publications, he was the senior author on the IBS papers (first one just a protocol). Nb this is the pilot study, and the self-management website uses CBT:
BMC Gastroenterology | Full text | Management of irritable bowel syndrome in primary care: the results of an exploratory randomised controlled trial of mebeverine, methylcellulose, placebo and a self-management website


So they plan to go ahead, apparently with some tweaking to the website CBT. I think it's fair to put him in the BPS camp. That would make 3 of 6 researchers, with one more still to be appointed - according to the minutes they are looking for a nurse. Perhaps they have someone from the FINE trial in mind.

Thanks Simon.

So the only significant difference between the groups was that those not using the website were feeling better at six weeks? And this is reason to pour more money into providing website CBT? And they're also a bit snide about medication being provided for IBS despite a poor evidence base?

Looks like we've got a real winner on board here. How was he appointed? Who decided on this?

There needs to be more of an attempt to provide an appropriate control with behavioural treatments, or else it's too easy to get people to report more positively just to be polite and grateful for someone trying to help them for free (and the various other forms of response bias that occur). That they couldn't even get a positive affect without any sort of active control should indicate to them that the money they are taking could be better spent elsewhere. They just really don't seem to appreciate that there are dangers to medicalising people's cognitions and behaviours, and are just excited by the fact that it can be done so cheaply.

 

I think it's fair to put him in the BPS camp. That would make 3 of 6 researchers, with one more still to be appointed - according to the minutes they are looking for a nurse.

Unfortunately it seems that the Chair (Holgate) doesn't always have a vote.
As far as I understand from the 'charter', the Chair does not have a vote at the AGM unless the voting is split, in which case he has a deciding vote.
But it seems that the Chair does have a vote at non-AGM executive meetings...
The charter was not as clear as it could be.

http://forums.phoenixrising.me/inde...llaborative-means-business.23574/#post-360805