UK Research Collaborative means business

June 4, 2013

by Simon McGrath

Prof Stephen Holgate

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.

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

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:

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.

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.

Fulll version at the ME Association

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.

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:

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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91 comments

{ 91 comments… read them below or add one }

WillowJ June 4, 2013 at 10:35 pm

thanks for info, Simon

Enid June 5, 2013 at 12:05 am

Thanks Simon though I fail to see what White is doing there unless sometimes it is necessary to "sup with the tiger".

Firestormm June 5, 2013 at 12:57 am

Bloody marvelous. Thumbs up from little-olde me :)

Edit: Simon's previous article about this initiative is attracting comment and debate about this latest summary and can be found here.

Simon June 5, 2013 at 3:09 am


Enid

Thanks Simon though I fail to see what White is doing there unless sometimes it is necessary to "sup with the tiger".

Peter White is very much part of the Big Tent approach tht Stephen Holgate has championed. Charles Shepherd said "part of the research agenda has to involve sitting down and discussing/debating with people you may not always agree with", but 'supping with the tiger' is neat.

Firestormm

Bloody marvelous. Thumbs up from little-olde me :)

Simon's previous article about this initiative is attracting comment and debate about this latest summary and can be found here.

Thanks for your comments there too. I understand why people have reservations about this initiative, but overall I think it's a huge opportunity. With the likes of Stephen Holgate, Julia Newton and Hugh Perry backing it, I can see why most ME charities are there too.

Simon June 5, 2013 at 3:12 am

Charles Shepherd's case for the CMRC was omitted from the thread version of the full blog, so I'm including it here

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

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:

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.

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.

Fulll statement at the ME Association

Enid June 5, 2013 at 3:46 am

Yes I do see the point Simon – let's hope those really up to date with current research outweigh any doubters still on the scene.

Dolphin June 5, 2013 at 6:26 am


Simon
Enid

Thanks Simon though I fail to see what White is doing there unless sometimes it is necessary to "sup with the tiger".

Peter White is very much part of the Big Tent approach tht Stephen Holgate has championed. Charles Shepherd said "part of the research agenda has to involve sitting down and discussing/debating with people you may not always agree with", but 'supping with the tiger' is neat.

People can discuss/debate with Peter White if they like. Not convinced it is likely to change his views.

Dolphin June 5, 2013 at 6:33 am

Time will tell what will happen.

Another scenario that has occurred to me that could cause problems is that if groups like the ME Association and ME Research UK leave at some stage and one is left with weak groups like AYME, Sussex & Kent ME/CFS Society, maybe Action for ME (unclear if they'll revert to the weak AfME that Chris Clark led), etc. who just go along with pretty much anything.

Esther12 June 5, 2013 at 6:42 am

It does seem that some patient organisations are led by those who feel it's sensible to just trust those who claim to be experts, while just campaigning for more money to be given to them. I'd like to see some more fiery patient organisations in there (even if I often disagree with them myself) just to mix things up a bit.

I'd like to see patient groups push for the release of the protocol outcome measures for the PACE trial through this organisation too. I'd be interested to see the responses from those others involved too: it might be a good way of seeing who is really interested in helping patients, and who want to use this group as a way of papering over past problems.

Simon June 5, 2013 at 6:46 am


Dolphin

People can discuss/debate with Peter White if they like. Not convinced it is likely to change his views.

Think Peter White is as likely to change his mind as Julia Newton is to change hers. The Collaborative doesn't aim to produce a consensus view of the illness.

Dolphin

Time will tell what will happen.

Another scenario that has occurred to me that could cause problems is that if groups like the ME Association and ME Research UK leave at some stage and one is left with weak groups like AYME, Sussex & Kent ME/CFS Society, maybe Action for ME (unclear if they'll revert to the weak AfME that Chris Clark led), etc. who just go along with anything.

Bad things might happen, but it's pretty clear from Charles Shepherd's comments that the MEA is very committed to making this work.

Firestormm June 5, 2013 at 7:18 am


Esther12

It does seem that some patient organisations are led by those who feel it's sensible to just trust those who claim to be experts, while just campaigning for more money to be given to them. I'd like to see some more fiery patient organisations in there (even if I often disagree with them myself) just to mix things up a bit.

I'd like to see patient groups push for the release of the protocol outcome measures for the PACE trial through this organisation too. I'd be interested to see the responses from those others involved too: it might be a good way of seeing who is really interested in helping patients, and who want to use this group as a way of papering over past problems.

I think if in the future these meetings were televised – we might actually 'see' and hear what is said by our representatives. It has not always been possible to see them in action so to speak. We only get to hear about the result – or non-result.

Whilst in the USA these conferences – televised – are too much for me to watch/listen to pretty much all the time; at least they pull no punches. We as a community see it all and our more able (at the time) friends can try and summarise these things for us or we can revisit the event when we are feeling up to it.

I am not saying that this collaborative will be live-streamed, or that it will be all of the time. But I hope at least that the conference – if it proceeds – will be. Or that this will be a public event.

Anyway, just wanted to say that to be fair we don't always know what happens at meetings or behind the scenes and more transparency would be a good thing to have on this particular (and any other organisations) agenda :)

Esther12 June 5, 2013 at 7:27 am

More transparency would certainly be a great thing. Some of my concerns about this do result from a knowledge of how the British state has operated in the past – with transparency and openness not exactly being key-words. Maybe things have changed though. It would be good to have a video recording of all their discussions (and bugs in the corridors outside!).

I think that we'd have far fewer problems around CFS if patients had been given access to researchers work/presentations/etc from the start.

Bob June 5, 2013 at 7:31 am

Thanks for the summary, Simon.

I've made a list of current members, just for reference (in no particular order)…

Executive members:

Professor Stephen Holgate, Southampton University – Chair
Dr Esther Crawley, Bristol University – Vice Chair

Action for M.E. (Sonya Chowdhury) – Secretariat
Association for Young People with ME (Mary-Jane Willows, Matthew Wright)
CFS Research Foundation (Peter Muir, Clive Kerfoot)
ME Association (Dr Charles Shepherd)
ME Research UK (Sue Waddle, Dr Neil Abbott)

Professor Julia Newton, Newcastle University
Professor Hugh Perry, Southampton University
Professor Paul Little, Southampton University
Professor Peter White, Barts and The London School of Dentistry and Medicine

Non-executive members:

Non yet elected.

Observers:

Medical Research Council (MRC) (Joe McNamara)
National Institute of Health Research
The Wellcome Trust.
BACME
Science Media Centre (SMC) (Ed Sykes)

Proposed future members/observers:

A nursing representative.
A Member of Parliament.

Bob June 5, 2013 at 7:32 am

Also for reference, this is the CFS/ME Research Collaborative 'charter':
http://www.actionforme.org.uk/Resources/Action for ME/Documents/cmrc-charter.pdf

I've just looked up the voting system:

3.4 Decision making
3.4.1 All members will be eligible to vote at the AGM.
(Note: It seems that this includes any non-executive members who may be elected in the future.)
3.4.2 Voting will ordinarily be using a simple majority, and by a show of hands, but may be
by ballot if the Chair so decides, in the event of late submission of items, or if requested by
any two members.
3.4.3 The Chair will not normally vote but, in the case of a tied vote, will have a casting
vote.

4.5 Decision making process
Decisions (including decisions on membership) will be made by the executive on the vote
of the chair plus at least 4 executive members (quoracy).

And this is how the formal meetings are organised:

3.3 Members meetings.
Members of the UK CMRC will meet once a year at the annual general meeting (AGM). At
this meeting, workstreams will present their progress in meeting objectives and
researchers will be able to present research findings. Confirmation of elections to the
executive will take place at this meeting (see Section 4). Additional meetings may also be
arranged if members so wish.

4.4. Meetings of the Executive
4.4.1 The Executive committee will meet at least twice a year in addition to the annual
members meeting.

Bob June 5, 2013 at 8:03 am


Dolphin

Another scenario that has occurred to me that could cause problems is that if groups like the ME Association and ME Research UK leave at some stage and one is left with weak groups like AYME, Sussex & Kent ME/CFS Society, maybe Action for ME (unclear if they'll revert to the weak AfME that Chris Clark led), etc. who just go along with pretty much anything.

Yes, that's what I've just been thinking, after looking at the list of members, and the voting system. Looking at the voting system (which is: one-member one-vote), perhaps it is a good idea for organisations like Invest in ME, and the TYMES Trust to become members. (They've both said that they don't want to get involved because of the make-up of the membership.)

Esther12 June 5, 2013 at 8:12 am

Sounds like it would be well worth trying to dilute the influence of some of the worst patient organisations.

CaronR June 5, 2013 at 8:25 am

Whenever the psychiatrists have been involved in ME projects, the result has been detrimental for ME patients and I don't have any confidence that this will be any different. The proponents of the biopsychosocial model may be in the minority on the exective board, but they wield a disproportionate amount of power and influence outside the collabortive. 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.

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. My fundraising efforts will definitely be going to Invest in ME or Tymes Trust rather than any of the groups associated with the Collaborative, which may potenitally and indirectly benefit the psychiatrists.

alex3619 June 5, 2013 at 8:40 am

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.

Of course I am presuming the puzzle is fully biomedical, but thats the way the objective evidence falls.

Bob June 5, 2013 at 8:47 am

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 June 5, 2013 at 8:56 am


alex3619

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…

Esther12 June 5, 2013 at 9:01 am

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 June 5, 2013 at 9:09 am


Bob

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!!

Enid June 5, 2013 at 11:16 am

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).

Simon June 5, 2013 at 11:48 am


CaronR

…. 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.

Enid June 5, 2013 at 11:55 am

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".

alex3619 June 5, 2013 at 12:40 pm


Bob

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.

alex3619 June 5, 2013 at 12:41 pm


Esther12

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 …. ?

Enid June 5, 2013 at 12:55 pm

@ 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.

alex3619 June 5, 2013 at 1:13 pm


Enid

@ 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.

Enid June 5, 2013 at 1:30 pm

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).

David Egan June 5, 2013 at 2:04 pm

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 http://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 ?

Dolphin June 5, 2013 at 5:52 pm

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:
——

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 ).

—–
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.

Esther12 June 5, 2013 at 7:40 pm

Ta D. Not a good sign. Moss-Morris is responsible for some of the worst recent stuff to come from the UK. FINE's failure didn't exactly dent her confidence, did it? I wonder how Little got into this group.

alex3619 June 5, 2013 at 8:56 pm


Enid

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.

alex3619 June 5, 2013 at 9:09 pm


David Egan

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?

Simon June 6, 2013 at 12:46 pm


Dolphin

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.

Simon June 6, 2013 at 12:57 pm


David Egan

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 http://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.

Esther12 June 6, 2013 at 5:49 pm


Simon

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.

Bob June 6, 2013 at 6:22 pm


Simon

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

Valentijn June 7, 2013 at 12:46 am


Esther12

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

Agreed … it doesn't sound like he has anything to do with ME/CFS, unless someone is operating under the psychosomatic theory that IBS and CFS are the same thing.

How the hell is this an ME/CFS project when IBS guys are being added to it and given a vote?

Simon June 7, 2013 at 2:38 am


Bob

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

Thanks for the clarification.

Although the chair does not have a vote, the 5 charities on the Executive do, which would lead to a hefty majority for the biomedical perspective. And the chair will usually have a lot of influence. If Stephen Holgate had a BPS view I would be very worried, but I've seen no evidence of that (and quite a lot to the contrary).

David Egan June 13, 2013 at 1:16 pm

Reply to Simon and others.

While respecting you and your viewpoints, from the very limited, very poorly funded ME research worldwide, some biomarkers have emerged. Do not expect the level of biomarkers and replicated studies one finds in cancer, aids, MS, etc. which have been well funded worldwide for many years. We must work with what little we have, in terms of biomarkers and research findings. They are listed on web site http://www.cfs-ireland.com (biomarkers link on web site).

The mockery and belittlement of the ME illness by psychiatrists resulted in little or no funding for ME for the past 25 years. The loss of research into ME is estimated at $600 million over 20 years. One can thank the psychiatrists for this. By the way psychiatrists have no biomarkers, they rely on assumptions, presumptions and guess work. Strangely they are on this research collaborative, very, very strange indeed.

As regards so called 'mood disorders' in ME patients, I am sure the mood would improve if biological diagnostics and treatments were applied to improve their condition and bring about recoveries. Furthermore, the use of psychiatry to belittle, mock, slander, insult and stigmatise ME patients would tend to affect the mood of ME patients ; what do you think Simon ?

One does not solve a problem by applying more of the problem into the mix, psychiatry in this case being the problem, in the faint hope that more problems piled upon problems will somehow produce a solution.

This research collaborative needs to define certain definite outcomes and results. These outcomes must be strategic to the interests of all ME patients. An outcome or result which answers the following questions would provide the strategic direction for research, diagnostics and treatments, clinics and public awareness.

- 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 http://www.cfs-ireland.com (biomarkers link) . By the way, psychiatry has no biomarkers, and relies on assumptions, opinions and presumptions.

- the format and structure of translational research and new biological based ME clinics

- 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 ?

Bob July 23, 2013 at 11:31 am

UK CFS/M.E. Research Collaborative Executive Board
Teleconference meeting
Summary of discussion
19 July 2013

Minutes of recent executive (teleconference) meeting:
http://www.actionforme.org.uk/Resources/Action for ME/Documents/get-informed/CMRC-190713.pdf.pdf

Bob July 31, 2013 at 5:38 pm

Minutes of Forward ME Group, with Stephen Holgate talking about the Research Collaborative.
July 2013
http://www.meassociation.org.uk/?p=16383

Very interesting, and worth reading.

Simon October 12, 2013 at 2:45 am

Summary of minutes from the latest meeting from the MEA site

UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013 | ME Association

highlights:

2. Research Priorities

All five charities have submitted their priorities which included the top five priorities identified by nearly 1,000 participants to Action for M.E.’s survey, where 90% of the respondents had M.E. During a conference call over the summer with a subgroup of the Board, it was agreed that SH will work to pull these priorities together to inform the Collaborative’s work.
There was a strong need identified for work with, and including, people with severe M.E. as research with this patient group is lacking. Action for M.E. is in the process of replicating the survey with researchers as part of their consultation to inform their Research Strategy and will report back results to the Board.

It was agreed to look at other organisations such as the MS Society where there has been effective collaborations between patients and researchers in driving research work forward. There was a lot of discussion about how the Board might take this forward.

4. Annual Science Conference

There is a small conference planning group that has been formed and a venue in Bristol has been booked for 1-2nd September 2014. The purpose is to explore how to drive and generate more research and to work more collaboratively. Ideas were shared for the focus of thematic workshops on such as genomics, diagnosis, treatment, cognitive dysfunction and biobanking.

There will be a patient/researcher joint session focused on how researchers and patients can work more effectively together. It was agreed to identify leading researchers in and outside of the field to invite and engage with the event including international experts.

Costs will be covered by attendees with a financial contribution from MRC. There may be additional costs, such as fees such as supporting patient participation that the charities could consider but this would need to be looked at in more detail.
Further consideration will be given to live streaming.

Firestormm October 12, 2013 at 4:47 am

MS Research priorities – referred to above – as identified by the MS Society: here.

The top 10 priorities

  1. Which treatments are effective to slow, stop or reverse the accumulation of disability associated with MS?
  2. How can MS be prevented?
  3. Which treatments are effective for fatigue in people with MS?
  4. How can people with MS be best supported to self-manage their condition?
  5. Does early treatment with aggressive disease modifying drugs improve the prognosis for people with MS?
  6. Is Vitamin D supplementation an effective disease modifying treatment for MS?
  7. Which treatments are effective to improve mobility for people with MS?
  8. Which treatments are effective to improve cognition in people with MS?
  9. Which treatments are effective for pain in people with MS?
  10. Is physiotherapy effective in reducing disability in people with MS?

Thank you to everybody who contributed to this process. This wouldn’t have happened without you.

We will now be working hard to ensure these priorities are addressed by research. As it stands, 75 per cent of our current research reflects priorities in the top 10, which is a great start. For example we are funding MS-SMART, a ground-breaking clinical trial investigating whether three drugs can alter progression in people with secondary progressive MS.

These priorities will complement our existing research strategy. We will continue to support research into the causes of MS, and treatments and care for people affected by MS.

This is a major shift in setting priorities for MS research. Beyond the MS Society it is hoped the top 10 will help researchers select topics when developing applications, and influence the decisions of other research funders.
We will be keeping you updated on our work to address these research priorities.

Spot the similarities? Spot the differences?

peggy-sue October 12, 2013 at 6:10 am

It any trouble likely to arise from the MEAssociation using ME to stand for Myalgic Encephalitis rather than Encephalomyleitis?

Is there a chance this could be used to negate their vote?

:p Simon said; "Think Peter White is as likely to change his mind as Julia Newton is to change hers."

I am sure Professor Newton would change her mind if the evidence showed she should.
That's what scientists do.
Ditch theories that the evidence does not support.

Then file the theory away, with all the evidence and methodology, for future reference, to ensure the same mistakes don't happen again.

There are far too many powerful folk from the bps school here for my liking. I can see why some of them should be there – but not holding all the cards!

Dolphin October 12, 2013 at 6:54 am


Firestormm

MS Research priorities – referred to above – as identified by the MS Society: here.

The top 10 priorities

  1. Which treatments are effective to slow, stop or reverse the accumulation of disability associated with MS?
  2. How can MS be prevented?
  3. Which treatments are effective for fatigue in people with MS?
  4. How can people with MS be best supported to self-manage their condition?
  5. Does early treatment with aggressive disease modifying drugs improve the prognosis for people with MS?
  6. Is Vitamin D supplementation an effective disease modifying treatment for MS?
  7. Which treatments are effective to improve mobility for people with MS?
  8. Which treatments are effective to improve cognition in people with MS?
  9. Which treatments are effective for pain in people with MS?
  10. Is physiotherapy effective in reducing disability in people with MS?

Thank you to everybody who contributed to this process. This wouldn’t have happened without you.

We will now be working hard to ensure these priorities are addressed by research. As it stands, 75 per cent of our current research reflects priorities in the top 10, which is a great start. For example we are funding MS-SMART, a ground-breaking clinical trial investigating whether three drugs can alter progression in people with secondary progressive MS.

These priorities will complement our existing research strategy. We will continue to support research into the causes of MS, and treatments and care for people affected by MS.

This is a major shift in setting priorities for MS research. Beyond the MS Society it is hoped the top 10 will help researchers select topics when developing applications, and influence the decisions of other research funders.
We will be keeping you updated on our work to address these research priorities.

Spot the similarities? Spot the differences?

ETA: My points relate to this being applied to ME/CFS.

I spot the similarities with the MRC "CFS/ME" research strategy (2003) which the patient community were very annoyed about. It was about justifying research into rehabilitative and nonpharmacological therapies (funding for the FINE and PACE Trials was announced a couple of weeks after it came out) and saying studying of the aetiology and pathophysiology wasn't that important.

There is already a surfeit of non-pharmacological research funding by the NIHR relative to other types of research.

Dolphin October 12, 2013 at 6:59 am

Here's some research the NIHR is currently funding:

I don't recall seeing the cost for the top four – would be interested if anyone did a FOI request:

—-

(i) Peter White's GETSET:

GETSET Graded Exercise Therapy guided SElf-help Treatment (GETSET) for patients with chronic fatigue syndrome/myalgic encephalomyelitis: a randomised controlled trial in secondary care

http://public.ukcrn.org.uk/Search/StudyDetail.aspx?StudyID=12053

—-

(ii) Hazel O'Dowd's Early intervention in fatigue: a feasibility study

The intervention is based on the principles of cognitive, behavioural and graded exercise and is delivered by a trained therapist as an individual face to face session with telelphone follow-up sessions.

http://www.controlled-trials.com/ISRCTN72645894/

—-

(iii) Dr Selwyn Richards (& Ms Clare McDermott)

This feasibility study will pilot an innovative, multi-disciplinary approach which has been developed through 2 years of collaborative work in Dorset between specialist health professionals, patients with experience of recovery, researchers and patient support groups drawing on the concept of 'Modelling Success', taken from Neuro-Linguistic Programming (NLP). In this process, insights from individuals with experience of recovery have been combined with expertise from specialist health professionals to: • identify recovery skills. • develop innovative ways of communicating these skills with patients who may have cognitive difficulties making it difficult for them to read, use a computer or engage in conversation.

http://public.ukcrn.org.uk/Search/StudyDetail.aspx?StudyID=14727

—-

(iv) Another NIHR-funded project. GP education from FINE Trial- and MUS-associated researchers.

http://www.biomedcentral.com/1471-2296/13/93
Developing resources to support the diagnosis and management of Chronic
Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) in primary care: a
qualitative study Kerin Hannon1*, Sarah Peters2, Louise Fisher3, Lisa
Riste1, Alison Wearden2, Karina Lovell4, Pam Turner5, Yvonne Leech5 and
Carolyn Chew-Graham5

This paper presents the initial phase of the METRIC (ME Education, Training
and Resources In Primary Care)

METRIC is funded by the NIHR Research for Patient Benefit Programme
http://www.manchester.ac.uk/aboutus/news/display/?id=10151

—-

We know the cost of the following

(v) (£864,000) & (vi) (£321,861)
£1.2 million for Chronic Fatigue Syndrome research Press release issued 16 September 2013

Two new research projects that aim to advance treatment for people with Chronic Fatigue Syndrome [CFS] or Myalgic Encephalopathy [ME], which affects an estimated 600,000 adults and children in the UK, have been awarded funding totalling nearly £1.2 million from the National Institute for Health Research [NIHR].
[..]
Dr Esther Crawley, Reader in Child Health at the University’s School of Social and Community Medicine, will also conduct a multicentre trial investigating the effectiveness of exercise therapy compared with activity management for mild and moderately affected children.

Dr Crawley, who has been awarded an NIHR Senior Research Fellowship, said: “Paediatric CFS/ME is common and disabling, yet little is known about recovery, whether national guidance on treatment using exercise is helpful, or what treatment strategies might work for children who are severely affected. Results from this study will help us determine how many children recover, how long it will take and which treatments are effective.”

The five-year study entitled ‘Investigating the treatment of paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) has been awarded NIHR funding of over £864,000.

[..]

Simon Collin:

The three-year study entitled ‘CFS in the NHS: diagnosis of Chronic Fatigue Syndrome in primary care and outcomes after treatment by specialist services’ has been awarded NIHR funding of £321,861.

—–

Esther12 October 12, 2013 at 7:15 am


Dolphin

I spot the similarities with the MRC research strategy (2003) which the patient community were very annoyed about. It was about justifying research into rehabilitative and nonpharmacological therapies (funding for the FINE and PACE Trials was announced a couple of weeks after it came out) and saying studying of the aetiology and pathophysiology wasn't that important.

There is already a surfeit of non-pharmacological research funding by the NIHR relative to other types of research.

Yeah. Lots of room for quackery there.

Bob October 12, 2013 at 12:04 pm

The summary of the meeting refers to AfME's patient survey re research priorities:

All five charities have submitted their priorities which included the top five priorities identified by nearly 1,000 participants to Action for M.E.’s survey, where 90% of the respondents had M.E. During a conference call over the summer with a subgroup of the Board, it was agreed that SH will work to pull these priorities together to inform the Collaborative’s work.

There was a strong need identified for work with, and including, people with severe M.E. as research with this patient group is lacking. Action for M.E. is in the process of replicating the survey with researchers as part of their consultation to inform their Research Strategy and will report back results to the Board.

http://www.meassociation.org.uk/201…rd-minutes-of-meeting-held-on-7-october-2013/

Below, are the details re AfME's survey results, and also AfME's stated research priorities:

Summary of Survey results:

The survey was completed by 915 people, and the areas of research were identified in the following priority order:

  1. disease processes (to achieve a better understanding of the underlying pathology of M.E.)
  2. more effective treatments
  3. faster and more accurate diagnosis
  4. clinical course of M.E., outcomes and prognosis
  5. severely affected patients

http://www.actionforme.org.uk/get-i…s/2013/research-priorities-our-survey-results

Survey results in more detail:
http://www.actionforme.org.uk/Resources/Action for ME/Documents/research/research-priorities-survey-results.pdf
(It's interesting to note what comes at the bottom of this list. e.g. 'psychological aspects' comes at the very bottom, but also 'sleep', 'diet', 'vitamins and/or supplements', and 'economic research' come low on the list.)

AfME's stated research priorities (I don't know how current this list is)
(These priorities differ slightly from the top priorities listed in the survey: e.g. 'effective prevention strategies' gets a relatively low score in the survey):

Medical research into:

  • disease processes to achieve a better understanding of the underlying pathology of M.E.
  • effective prevention strategies
  • faster and more accurate diagnosis
  • more effective treatments
  • ultimately, a cure.

Social policy research directed towards:

  • improved health and social care services
  • informing the development of a fairer welfare benefits system
  • identifying the costs to individuals and society of M.E.
  • better support in education and employment
  • a more sympathetic and adequately funded approach by Government to providing appropriate support for people with M.E. across the whole area of public policy.

http://www.actionforme.org.uk/get-informed/research/our-research-policy/index

Dolphin October 12, 2013 at 12:16 pm

AfME survey results (of 910 votes):

The last one was:

Psychological aspects
1st choice: 6 people (0.7%)
2nd choice: 16 people (1.8%)
3rd choice: 38 people (4.2%)

Or of 2685 votes, "psychological aspects" got 60 (2.2% of 2685) (and most of them were third choice).

Possibly a weighting system like 3 point for 1st, 2 point for 2nd and 1 point for 3rd would be better

http://www.actionforme.org.uk/Resources/Action for ME/Documents/research/research-priorities-survey-results.pdf

Bob October 12, 2013 at 12:24 pm


Dolphin

AfME survey results (of 910 votes):

The last one was:

Psychological aspects​
1st choice: 6 people​
…​
http://www.actionforme.org.uk/Resources/Action for ME/Documents/research/research-priorities-survey-results.pdf​

I think we need to point that out to AfME if we ever see them promoting psychological research!

Simon October 12, 2013 at 1:03 pm


Dolphin

I spot the similarities with the MRC "CFS/ME" research strategy (2003) which the patient community were very annoyed about. It was about justifying research into rehabilitative and nonpharmacological therapies (funding for the FINE and PACE Trials was announced a couple of weeks after it came out) and saying studying of the aetiology and pathophysiology wasn't that important

Not sure about that. The first big difference is that these were the priorities identified by patients and health care professional, as opposed to researchers/clinicians with some consultation. This was organised by the very patient-friendly James Lind Foundation, presumably because the MS Society chose to do things that way.

Second, it depends on how you interpret the list

Clear biomedical issues
2. How can MS be prevented
3. Does early treatment with aggressive disease modifying drugs improve the prognosis for people with MS?
8. Is Vitamin D supplementation an effective disease modifying treatment for MS?

Self-help
4. How can people with MS be best supported to self-manage their condition?

Clear psychological/behavioural approaches
10. Is physiotherapy effective in reducing disability in people with MS?
But GET doesn't seem to be controversial in MS, and was first formally trialed because patients recommended it. Interestingly, the Light's moderate exercise gene expression study found that MS patients recovered quickly from such exercise (self-rated) compared with CFS patients.

Other – end result, not type of treatment is specified
1. Which treatments are effective to slow, stop or reverse the accumulation of disability associated with MS?
3. Which treatments are effective for fatigue in people with MS?
7. Which treatments are effective to improve mobility for people with MS?
8. Which treatments are effective to improve cognition in people with MS?
9. Which treatments are effective for pain in people with MS?

What surprised me most is the absence of a simple 'find a cure' from the list, though maybe point 1 covers that. I bet most MS patients are not looking at BPS approaches to deliver most of the 'Other' goals,

Simon October 12, 2013 at 1:04 pm

Bob Dolphin re AfME's survey
So,

  • 68% of respondents wanted to prioritise disease processes, with 41% of all responders putting it as their first choice
  • 6.6% of respondents wanted to prioritise psychological aspects, with 0.7% of all responders putting it as their first choice

By a happy co-incidence, CMRC's chair Stephen Holgate argues that research now needs to focus on causal molecular pathways.

Dolphin October 12, 2013 at 1:07 pm


Simon

I spot the similarities with the MRC "CFS/ME" research strategy (2003) which the patient community were very annoyed about. It was about justifying research into rehabilitative and nonpharmacological therapies (funding for the FINE and PACE Trials was announced a couple of weeks after it came out) and saying studying of the aetiology and pathophysiology wasn't that important

Not sure about that. The first big difference is that these were the priorities identified by patients and health care professional, as opposed to researchers/clinicians with some consultation. This was organised by the very patient-friendly James Lind Foundation, presumably because the MS Society chose to do things that way.

My point wasn't that the MS Society survey was biased.

My point was that I wouldn't be happy it being used at this moment in time for ME/CFS in the UK as it would likely be used to justify a lot of research done by biopsychosocialists.

One has to take political realities into the equation. It's a bit like asking was the PACE Trial a good idea: in theory, one might say it would be interesting to know how effective GET, CBT and a form of pacing are. In practice, I don't think having such a major trial led by Peter White, Trudie Chalder and Michael Sharpe at that moment in time was a good idea.

Bob October 12, 2013 at 1:14 pm


Simon

Second, it depends on how you interpret the list

Indeed, and this very much depends on who gets to interpret the list!

Dolphin October 12, 2013 at 1:14 pm


Clear biomedical issues
2. How can MS be prevented

Not so clear when applied to ME/CFS at this moment in time in the UK:

Hazel O'Dowd's Early intervention in fatigue: a feasibility study

http://public.ukcrn.org.uk/Search/StudyDetail.aspx?StudyID=11924

http://www.controlled-trials.com/ISRCTN72645894/


The intervention is based on the principles of cognitive, behavioural and graded exercise and is delivered by a trained therapist as an individual face to face session with telelphone follow-up sessions.


The overall aim of this study is to investigate the feasibility and acceptability of conducting a randomised controlled trial (RCT) to investigate the efffectiveness and cost effectiveness of early intervention for Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) compared with standard medical care in primary care.

This can be seen as a prevention study (preventing fatigue develop into CFS, as they would see it).

Dolphin October 12, 2013 at 1:26 pm


Simon

By a happy co-incidence, CMRC's chair Stephen Holgate argues that research now needs to focus on causal molecular pathways.

And my point was that a priority list like that doesn't focus on the causal molecular pathways.

And similarly it can easily be used to justify more of the same funding patterns that have existed with the MRC funding over the last 20 years and now NIHR (excluding the ring-fenced money in 2011).

The MRC research strategy in 2003 talked a lot about working out effective treatments.

ETA: I'm not one of the people totally against the collaborative. But I think it's important to point out that it can easily be misdirected if people aren't conscious of possible problems.

Simon October 13, 2013 at 3:31 am


Dolphin

My point wasn't that the MS Society survey was biased.

My point was that I wouldn't be happy it being used at this moment in time for ME/CFS in the UK as it would likely be used to justify a lot of research done by biopsychosocialists.

One has to take political realities into the equation. It's a bit like asking was the PACE Trial a good idea: in theory, one might say it would be interesting to know how effective GET, CBT and a form of pacing are. In practice, I don't think having such a major trial led by Peter White, Trudie Chalder and Michael Sharpe at that moment in time was a good idea.

I didn't think it was being used as a template for ME/CFS research, but as an example of how a patient charity established research priorities, in this case using both health researchers and patients. And bear in mind that for MS, BPS is not such a big factor – I suspect things would have been spelled out more clearly by patients if it had been. If you factor that in then I'm not sure the list is that different from ME – but the point is it's a list of MS priorities, not ME ones. Similarities/differences are interesting, but no more than that.

Whereas the AfME list explicityly prioritises pathological pathways. Incidentally, the AfME list was based on a survey of poeple of whom 90% had ME. I wonder if the 6% choosing to prioritise psychological research came came disproportionately from the 10% who didn't have ME.

I also wonder how big the contrast in results will be when AfME send the same survey to researchers.

Dolphin

ETA: I'm not one of the people totally against the collaborative. But I think it's important to point out that it can easily be misdirected if people aren't conscious of possible problems.

My ETA too:
Good to hear, and I am very conscious of how everything could go wrong.

It is at least a minor miracle that the CMRC ever came into being given the wildly diverging views represented within it (I gather the birthing pains were immense) and its ongoing existence will no doubt continue to be a 'challenge'. I'm sure there will be constant jockeying for position and attempts to take control of the agenda. That said, I think it has the potential to lead to more and better research in the UK than would have happened if it had never been created- and I think Stephen Holgate deserves immense credit for his work.

Firestormm October 13, 2013 at 3:39 am

Simon It fascinates me that AfME of all charities are doing this survey – when they have no money :)

Dolphin October 13, 2013 at 8:00 am


Simon

I didn't think it was being used as a template for ME/CFS research, but as an example of how a patient charity established research priorities, in this case using both health researchers and patients. And bear in mind that for MS, BPS is not such a big factor – I suspect things would have been spelled out more clearly by patients if it had been. If you factor that in then I'm not sure the list is that different from ME – but the point is it's a list of MS priorities, not ME ones. Similarities/differences are interesting, but no more than that.

Most of the same points/principles could be applied to ME. I'm pointing out the problems.

Charles Shepherd said on MEA on FB on Monday:

Interesting list of research priorities that have been identified by people with MS – a list that also partially overlaps with ME/CFS. We discussed this list at the UK ME/CFS Research Collaborative meeting at the MRC on Monday this week

So I don't think we can necessarily assume that they were talking about how it was drawn up. I've seen no mention about it being discussed in the context of how it was drawn up.

The AfME list has effective treatments as the second item. It could be operationalised like:

Other – end result, not type of treatment is specified
1. Which treatments are effective to slow, stop or reverse the accumulation of disability associated with MS?
3. Which treatments are effective for fatigue in people with MS?
7. Which treatments are effective to improve mobility for people with MS?
8. Which treatments are effective to improve cognition in people with MS?
9. Which treatments are effective for pain in people with MS?

The point I'm trying to make, which you appear to agree with, is MS is different from ME. The BPS is not such a big factor in that illness. So we have to be very wary copying what they do.

Simon October 14, 2013 at 8:39 am


Dolphin

Most of the same points/principles could be applied to ME. I'm pointing out the problems.

So I don't think we can necessarily assume that they were talking about how it was drawn up. I've seen no mention about it being discussed in the context of how it was drawn up.

The AfME list has effective treatments as the second item. It could be operationalised like:

The point I'm trying to make, which you appear to agree with, is MS is different from ME. The BPS is not such a big factor in that illness. So we have to be very wary copying what they do.

I see what you mean. However, I hope AfME and other charities on the CMRC will note the AfME survey that showed 'psychological aspects' had minimal support and didn't make the top 3 of 94% of responders ie patients are not looking for yet more psychological research into treatments for fatigue etc. That road has been well-travelled, with less-than-impressive resutls.

peggy-sue October 14, 2013 at 10:08 am

Simon said;
"That road has been well-travelled, with less-than-impressive results"

I don't know, Simon – they really do spend a lot of time and effort coming up with very impressive acronyms.
even the latest "money down the drain project" has provided us with GETSET…
Surely that's worth a few grand?;)

(For the foggy – I am being sarcastic)

Firestormm October 14, 2013 at 11:54 am

There is ever seen to be a fight between 'treatment' now and 'research' for treatment (or cure) some time in the future.

Those who are pushing the 'management' options upon us seem to be to be doing very little more than reinventing the wheel.

All these projects are achieving little – they are not improving on the recommendations in NICE. All they are doing is – in my mind – wasting money.

Illness Management options are here to stay – until something better comes along. They don't seem very interested in using these funds to find the 'something better' – although that money Esther received recently I think was in part intended to discover if GET was good enough for kids or somesuch; but it still seems a waste and a repetitive waste to me.

Research – and I speaketh generally – in all other diseases comes in large part (75% +) from the voluntary and/or private sector. Take cancer research if you like or MS.

The results from the MS survey will like as not help direct – or reinforce – the spending priorities of the MS charity sector and not so much the 'government'.

I think we perhaps need to start thinking more about what our charities are doing with our money, and slightly less about what da government is.

The collaborative is not a funding initiative. They have no money. I am interested in their influence and in how a patient survey might help them reach a joint funding venture that embraces all ME charities and (to perhaps a lesser extent) government sources.

It's potentially very influential. It could for example influence BACME as well as the MRC and that other body I can't remember who funded Esther recently: but it will still depend on attracting researchers to whatever projects are highlighted.

This is where we have fallen down before. But perhaps collaborative efforts will – unlike in the past – be of sufficient size (£) to make a study significant and attractive.

Dolphin October 15, 2013 at 5:50 pm


Firestormm

Simon It fascinates me that AfME of all charities are doing this survey – when they have no money :)

I'm pleased they've been giving money to research in recent years. Generally under £100,000 a year I think, sometimes a lot less than that, but still something.

I remember for many years, they were just lobbying which I think probably influenced them to support the application of the PACE Trial for funding – so that there was some research happening they could point to.

Dolphin October 15, 2013 at 5:51 pm


Firestormm

There is ever seen to be a fight between 'treatment' now and 'research' for treatment (or cure) some time in the future.

Those who are pushing the 'management' options upon us seem to be to be doing very little more than reinventing the wheel.

All these projects are achieving little – they are not improving on the recommendations in NICE. All they are doing is – in my mind – wasting money.

Yes.

And I don't want to see the collaborative coming up with something which would overly justify more funding of such research.

Dolphin October 15, 2013 at 7:05 pm


Dolphin

I'm pleased they've been giving money to research in recent years. Generally under £100,000 a year I think, sometimes a lot less than that, but still something.

I remember for many years, they were just lobbying which I think probably influenced them to support the application of the PACE Trial for funding – so that there was some research happening they could point to.

In 2012-2013, they spent £57,713 (ref:

http://www.actionforme.org.uk/Resou…informed/annual-report-and-accounts-12-13.pdf )

They have the following policy now:

Research Fund Trustees have also elected to set aside 25% of any legacy received to a designated research fund.

This has resulted in a transfer of £30,000 in 2012/13. These are being used to support several new pilot research
projects initiated this year.

Dolphin October 15, 2013 at 7:23 pm

A small bit of qualitative data from Action for ME's research priorities survey

http://bit.ly/17I1CPn i.e.
http://www.actionforme.org.uk/Resources/Action for ME/Documents/get-informed/annual-report-and-accounts-12-13.pdf

We recently asked people with M.E. to let us know what their research priorities were.
We received more than 1,000 replies.

Here’s just a few:

- “I think we need to have more biomedical research to understand what is actually going wrong in order to find treatments. It’s the only way forward.”

- “I’d first support research which aims to prove once and for all that this is a real, physical illness, which we are not fabricating.”

- “I would like to see a cure in my lifetime. I would also like to see more understanding of the illness and effective treatments created. Thank you for working hard on our behalf.”

- “I need a cure and/or the ability to prove that this condition exists and how debilitating it is. Being judged because you don’t look ill is the final slap in the face.”

- “I just would like a cure – I have suffered 21 years now.”

The 6 NIHR-funded projects I mentioned here: http://forums.phoenixrising.me/inde…ative-means-business.23574/page-3#post-394575 don't do a good job in doing this, I would say.

Firestormm October 15, 2013 at 8:40 pm

Dolphin I think you might find that much of this research money has in recent years been in support of the collaborative effort to get the Biobank up and running. Though it may be AfME are unable to continue supporting this (I would say) vital initiative.

As a general point – I would certainly endorse a statement from any charity declaring x% of all donations (including legacies) being reserved automatically for biomedical research projects.

I was discussing with others about the positives and negatives of promoting individual projects rather than simply having a general research fund for donations.

I think it appeals more to people if there is a definite project – with details and reasons. I believe it would result in more support on the whole.

Rituximab and IiME is perhaps an exception – but it could be indicative of the way things should be done in future. I mean having a designated project has resulted here – and with e.g. that clinical centre of excellence (though I'm never sure where they are with that) in funds being raised and from sources that previously unknown sources.

There are downsides to designating projects e.g. it can tie you to the project, the project might not come to fruition, what happens if you don't raise enough cash etc. But for existing projects e.g. Biobank or for infrastructure, then why not? At least people have a better idea of where their money is going, and who is endorsing it and why.

Of course it also helps to have a highly motivated, committed and innovative fundraising team.

Any thoughts?

Dolphin October 16, 2013 at 10:28 am


Firestormm

Dolphin I think you might find that much of this research money has in recent years been in support of the collaborative effort to get the Biobank up and running. Though it may be AfME are unable to continue supporting this (I would say) vital initiative.

Biobank got £1m (US$1.59m) in funding http://blogs.lshtm.ac.uk/news/2013/06/28/uk-mecfs-biobank-project-awarded-1-million-grant/ . So AfME may not need to fund it now.

Dolphin October 16, 2013 at 10:32 am


Firestormm

As a general point – I would certainly endorse a statement from any charity declaring x% of all donations (including legacies) being reserved automatically for biomedical research projects.

I was discussing with others about the positives and negatives of promoting individual projects rather than simply having a general research fund for donations.

I think it appeals more to people if there is a definite project – with details and reasons. I believe it would result in more support on the whole.

Rituximab and IiME is perhaps an exception – but it could be indicative of the way things should be done in future. I mean having a designated project has resulted here – and with e.g. that clinical centre of excellence (though I'm never sure where they are with that) in funds being raised and from sources that previously unknown sources.

There are downsides to designating projects e.g. it can tie you to the project, the project might not come to fruition, what happens if you don't raise enough cash etc. But for existing projects e.g. Biobank or for infrastructure, then why not? At least people have a better idea of where their money is going, and who is endorsing it and why.

Of course it also helps to have a highly motivated, committed and innovative fundraising team.

Any thoughts?

I think one needs a mixture. Ring-fenced funding for particular projects can be useful for fundraising. But I think ideally one wants a range of angles being looked at (rather than just one or two big projects) and it could be slow and awkward for researchers if they always had to wait for money to be raised (and they might not be sure it would be raised).

Firestormm October 16, 2013 at 10:48 am


Dolphin

Biobank got £1m (US$1.59m) in funding http://blogs.lshtm.ac.uk/news/2013/06/28/uk-mecfs-biobank-project-awarded-1-million-grant/ . So AfME may not need to fund it now.

I am afraid that isn't the case. Those charities – MEA, MERUK, and AfME – who have got the project this far, will all be asked (and are in fact considering) to continue funding this project even with the NIH money in place.

Am afraid I can't break it down for you at the present time but hope to at some point.

Dolphin October 16, 2013 at 10:50 am


Firestormm
Dolphin

Biobank got £1m (US$1.59m) in funding http://blogs.lshtm.ac.uk/news/2013/06/28/uk-mecfs-biobank-project-awarded-1-million-grant/ . So AfME may not need to fund it now.

I am afraid that isn't the case. Those charities – MEA, MERUK, and AfME – who have got the project this far, will all be asked (and are in fact considering) to continue funding this project even with the NIH money in place.

Am afraid I can't break it down for you at the present time but hope to at some point.

Thanks. Interesting.

Firestormm October 16, 2013 at 11:47 am


Dolphin

Thanks. Interesting.

I didn't mean that to sound like 'I know things that you don't' it's just that I do know things are in flux at present and that you should get an announcement about who is doing what and how much, shortly.

It is true though that the charities will be needed to continue funding despite the NIH contribution. To be honest, it's all a mess in my own head, Dolphin, and I haven't had a chance to sit down and work all the figures out.

Dolphin October 16, 2013 at 3:16 pm

No worries, Firestormm. It is useful information you have shared.

Esther12 December 3, 2013 at 8:51 pm


Dolphin

Time will tell what will happen.

Another scenario that has occurred to me that could cause problems is that if groups like the ME Association and ME Research UK leave at some stage and one is left with weak groups like AYME, Sussex & Kent ME/CFS Society, maybe Action for ME (unclear if they'll revert to the weak AfME that Chris Clark led), etc. who just go along with pretty much anything.

I thought I'd already seen this mentioned elsewhere, but I thought that I should add that the Susses and Kent ME/CFS society is now a member.

Bob

I've made a list of current members, just for reference (in no particular order)…

Executive members:

Professor Stephen Holgate, Southampton University – Chair
Dr Esther Crawley, Bristol University – Vice Chair

Action for M.E. (Sonya Chowdhury) – Secretariat
Association for Young People with ME (Mary-Jane Willows, Matthew Wright)
CFS Research Foundation (Peter Muir, Clive Kerfoot)
ME Association (Dr Charles Shepherd)
ME Research UK (Sue Waddle, Dr Neil Abbott)

Professor Julia Newton, Newcastle University
Professor Hugh Perry, Southampton University
Professor Paul Little, Southampton University
Professor Peter White, Barts and The London School of Dentistry and Medicine

Non-executive members:

Non yet elected.

Observers:

Medical Research Council (MRC) (Joe McNamara)
National Institute of Health Research
The Wellcome Trust.
BACME
Science Media Centre (SMC) (Ed Sykes)

Proposed future members/observers:

A nursing representative.
A Member of Parliament.

Bob

Also for reference, this is the CFS/ME Research Collaborative 'charter':
http://www.actionforme.org.uk/Resources/Action for ME/Documents/cmrc-charter.pdf

I've just looked up the voting system:

3.4 Decision making
3.4.1 All members will be eligible to vote at the AGM.
(Note: It seems that this includes any non-executive members who may be elected in the future.)
3.4.2 Voting will ordinarily be using a simple majority, and by a show of hands, but may be
by ballot if the Chair so decides, in the event of late submission of items, or if requested by
any two members.
3.4.3 The Chair will not normally vote but, in the case of a tied vote, will have a casting
vote.

4.5 Decision making process
Decisions (including decisions on membership) will be made by the executive on the vote
of the chair plus at least 4 executive members (quoracy).

And this is how the formal meetings are organised:

3.3 Members meetings.
Members of the UK CMRC will meet once a year at the annual general meeting (AGM). At
this meeting, workstreams will present their progress in meeting objectives and
researchers will be able to present research findings. Confirmation of elections to the
executive will take place at this meeting (see Section 4). Additional meetings may also be
arranged if members so wish.

4.4. Meetings of the Executive
4.4.1 The Executive committee will meet at least twice a year in addition to the annual
members meeting.

Bob December 3, 2013 at 10:30 pm


Esther12

I thought I'd already seen this mentioned elsewhere, but I thought that I should add that the Sussex and Kent ME/CFS society is now a member.

Do you happen to know what type of member? Non-executive perhaps?
They very much support the psycho-social side of things, including promoting LP to their members.

Esther12 December 4, 2013 at 9:21 am


Bob

Do you happen to know what type of member? Non-executive perhaps?
They very much support the psycho-social side of things, including promoting LP to their members.

It said 'associate member' – have to admit that I'm not really sure what that means.

Didn't the guy who runs it have his wife report being cured by lp? That may be a confused semi-memory though, so don't pass it on! Any embrace of lp represents a disturbing embrace of quackery though.

Bob December 10, 2013 at 3:23 am

Prof Hugh Perry (an executive member of the UK research collaborative) gave an interesting and reassuring presentation at the recent Australian conference. Amongst other things, he discussed the UK Research Collaborative's research intentions, the MRC's intentions in relation to ME, and the MRC's current funded research projects.

I'm really impressed with Hugh Perry, but I hadn't come across him before his association with the research collaborative. I happened to look him up the other day, for some reason, and came across the following which I found very impressive, and relevant to ME/CFS (It's his Southampton Uni webpage that describes his academic speciality – It's probably been posted previously, but I have a short memory):
http://www.southampton.ac.uk/biosci/about/staff/vhp.page#research

Anyone following the developments of the UK Research Collaborative would probably be interested in reading the section about Prof Hugh Perry's presentation in Dr Ros Vallings' report of the Australian conference. (Tom Kindlon posted it as a Tweet.) It's contains lots of interesting info:
https://twitter.com/TomKindlon/status/409762381439725568
Long Tweet:
http://www.twitlonger.com/show/n_1rt43lk

I've extracted the info about Perry's presentation:

Hugh Perry (Southampton, UK) gave the inaugural Alison Hunter Memorial Foundation address. However he began his address pointing out that neuro-immunology has a large role to play in the understanding and research associated with ME/CFS. He reiterated how much Christine Hunter (AMHF) had raised so much the awareness of the illness.

The first part of his talk explained the Medical Research Council (MRC) mission. The MRC has been established for 100 years. The mission is to encourage research, produce skilled researchers, disseminate knowledge and bring dialogue to the table. ME/CFS research has been supported since 2003. A strategy document was produced in 2008 – leading to an expert group incorporating external researchers for collaboration. The idea was to bring in new people, new research and new technologies. One of the big challenges was the unmet clinical need (up to 600,000 sufferers in the UK). Grants were initially low as there was no clear pathology and no targeted therapies. Treatment has been geared towards support and symptom control. There is need to define phenotypes and sub-phenotypes and embrace new technology. He then outlined a prioritization of topics for research: Autonomic dysfunction, cognitive symptoms, fatigue, immune dysregulation, pain and sleep. There is a need to bring in external expertise. In the medium term there is need to encompass comorbidity and chronicity, susceptibility and resilience, mitochondrial function, use of well characterized cohorts and development of intervention (eg cytokine inhibition). In the longterm there should be development of imaging technologies, assessment of genetic risk and review of neurobiological changes (eg cerebral activity). The MRC is currently funding new research looking into the mechanism of ME/CFS (1.6 million pounds). There needs to be partnership with new researchers to qualify for grants, and a focus on one of the 6 topics listed above. So far the following awards have been made: Mitochondrial function, Autonomic dysfunction, Biological fingerprints of fatigue, Slow-wave sleep and daytime function, persistent fatigue induced by interferonα (a new model for ME/CFS). The MRC role is to support excellent and innovative research. There is increased emphasis on translation, and increased commitment to develop research for application to new therapies. This needs a “bottom-up” researcher –led approach. This has led to the establishment of the UK ME/CFS Research collaborative launched in April 2013, associated with Dr Stephen Holgate. This brings together funders and ME Charities. The MRC acts as an observer. The aim is to collaborate the ME charities and to increase awareness with the research community. The key to success is that research should drive the agenda, the “bottom-up” approach and the engagement of researchers outside the field. This has led to the First UK CMRC Research conference to be held in Bristol in September 2014.

The second part of the address focused on the Impact of Systemic Inflammation on the Brain. He described how diseases “talk” to the brain, and how infection makes you feel “sick”. Inflammation changes behavior. These symptoms can be the same as those experienced by those with ME/CFS. This highly organized strategy is critical to survival if living in the wild. Systemic inflammation activates selective brain regions. Infection causes a localized inflammatory response, with release of pro-inflammatory cytokines, which then communicate with the brain. The cytokines act on the endotheliail cells, which in turn affect the macrophages in the brain (microglia) – and microglia play a key role in immune/brain communication. This is tightly regulated by the brain/micro-environment. The microglia may become dysregulated, escaping from CNS control, and this leads to massive pathology and symptoms equivalent to microglial activation. The activated microglia may proliferate, leading to neuro-degeneration. The microglia may be primed by decline (eg Alzheimer’s disease). Macrophages are primed by exposure to ɣinterferon and then triggered by infection, which is the secondary stimulus. In a younger population the microglia can be primed by the environment – living in dirty conditions (animal model) predisposes the brain to give a more robust response to infection, which can lead to microglial activation for months. Smoking and obesity lead to higher levels of cytokines and this in turn leads to more activation of the microglia as if a peripheral disease exists. Lifestyle, systemic infection and genetics all prime the microglia.

The final conclusion/hypothesis was that systemic infection and inflammation, that normally leads to sickness behavior in an individual with a healthy brain, is a homeostatic mechanism with no long term consequences, is distorted and maladaptive in an individual with primed microglia. The question is to find “inhibitors” to penetrate the brain and downregulate the microglia.

Bob December 10, 2013 at 3:31 am

After that positive observation, now to a negative reflection.
I've been thinking about the S&K ME/CFS Society's recruitment to the research collaborative.
They are well known for dogmatically promoting the cognitive-behavioural model of illness, and supporting the cognitive-behavioural proponents.
I reckon they might be the only local group in the country who is well known for taken a strong and rigid stance about this.
So is it simply a coincidence that they've been recruited, or was there a purposeful drive to get a patient group on board who would side with the cognitive-behavioural proponents?
I can't help having strong feelings that it was the latter.
I do find this development quite irritating, and not at all positive.

Bob December 10, 2013 at 3:47 am

Prof Hugh Perry: "Treatment has been geared towards support and symptom control."

I hope this is a telling insight into the thinking behind Profs Hugh Perry and Stephen Holgate re CBT/GET.

Edit: i.e. It implicitly suggests that CBT/GET are not curative and do not address the underlying disease mechanism or cause of illness.

Firestormm December 10, 2013 at 4:29 am


Bob

Prof Hugh Perry: "Treatment has been geared towards support and symptom control."

I hope this is a telling insight into the thinking behind Profs Hugh Perry and Stephen Holgate re CBT/GET.

In what way, Bob? Sorry you lost me.

Dolphin December 10, 2013 at 7:39 am


Bob

Prof Hugh Perry (an executive member of the UK research collaborative) gave an interesting and reassuring presentation at the recent Australian conference. Amongst other things, he discussed the UK Research Collaborative's research intentions, the MRC's intentions in relation to ME, and the MRC's current funded research projects.

I'm really impressed with Hugh Perry, but I hadn't come across him before his association with the research collaborative. I happened to look him up the other day, for some reason, and came across the following which I found very impressive, and relevant to ME/CFS (It's his Southampton Uni webpage that describes his academic speciality – It's probably been posted previously, but I have a short memory):
http://www.southampton.ac.uk/biosci/about/staff/vhp.page#research

Anyone following the developments of the UK Research Collaborative would probably be interested in reading the section about Prof Hugh Perry's presentation in Dr Ros Vallings' report of the Australian conference. (Tom Kindlon posted it as a Tweet.) It's contains lots of interesting info:
https://twitter.com/TomKindlon/status/409762381439725568
Long Tweet:
http://www.twitlonger.com/show/n_1rt43lk

I've extracted the info about Perry's presentation:

I wonder could Stephen Holgate have asked him to speak for him?

Simon December 12, 2013 at 6:28 am


Dolphin

I wonder could Stephen Holgate have asked him to speak for him?

I would be surprised – Hugh Perry is quite a big player in his own right, and he was talking about his core research area, the link between inflammation and the brain.

Professor V Hugh Perry @ Southampton Uni | Research interests:

Inflammation in the CNS and its contribution to Neurological Disease
The inflammatory response evolved to protect organisms against injury and infection. Following an injury or infection a complex cascade of events leads to the delivery of blood-borne leucocytes to sites of injury to kill potential pathogens and promote tissue repair. However, the powerful inflammatory response has the capacity to cause damage to normal tissue and dysregulation of the innate or acquired immune response is involved in different pathologies.

It has long been known that Multiple Sclerosis is an inflammatory disease of the brain but it is now recognized that inflammation may contribute to diseases such as stroke, traumatic brain injury, HIV-related dementia, Alzheimer's disease and prion disease. The recognition of an inflammatory component in the pathology of these different diseases has come from the development of new techniques and reagents for the study of inflammation biology in brain pathology.

It is now known that the resident macrophages of the central nervous system (CNS), the microglia, may exist in many different states of activation and contribute to the outcome of neurological disease in diverse ways. The goal of my research group the CNS Inflammation Group is to discover how inflammation contributes to the outcome of neurological disease. This information may help in the development of therapies to treat acute and chronic neurodegenerative conditions, which at present are largely untreated

Bob January 14, 2014 at 12:09 pm


Bob

Prof Hugh Perry: "Treatment has been geared towards support and symptom control."

I hope this is a telling insight into the thinking behind Profs Hugh Perry and Stephen Holgate re CBT/GET.

Firestormm

In what way, Bob? Sorry you lost me.

I must have missed your question.

By saying that current treatments are geared towards 'support and symptom control', it suggests that he is not of the opinion that CBT/GET are curative or that they address the underlying disease mechanism or cause.

Esther12 January 14, 2014 at 12:14 pm

one problem with that response is that it indicates a lack of awareness over the problems with misleading claims about the curative nature of thee interventions.

Bob January 14, 2014 at 12:20 pm


Esther12

one problem with that response is that it indicates a lack of awareness over the problems with misleading claims about the curative nature of thee interventions.

Perhaps, or perhaps he just doesn't want to explicitly attack any colleagues?
Whichever, it's still good to see that he is aware of the limitations of CBT/GET.

Esther12 January 14, 2014 at 12:25 pm


Bob

Perhaps, or perhaps he just doesn't want to explicitly attack any colleagues?

That's a bad sign too imo!

Attacking dodgy colleagues is the most worthwhile thing to be done in CFS research!

Bob January 14, 2014 at 12:30 pm


Esther12

That's a bad sign too imo!

Attacking dodgy colleagues is the most worthwhile thing to be done in CFS research!

I understand why researchers might not want to launch explicit attacks on other researchers, and make themselves enemies within their community.
And the psych-lobby always seem to get the upper-hand when when in battle, so making explicit attacks could cause major problems for the whistle-blower (for want of a better phrase), and it would probably be futile anyway.
The psych-lobby use smear tactics, and get people removed from their positions, and they get funding withdrawn.
(Remember Jonathan Kerr?)

Simon January 15, 2014 at 1:30 am


Esther12

Attacking dodgy colleagues is the most worthwhile thing to be done in CFS research!

Robust debate is a feature of some very strong life science areas :) . On the other hand, what matters most is getting high quality, relevant research going and both Hugh Perry and Stephen Holgate are being very helpful there. So saying that what's needed is a focus on causal molecular pathways, and that current approaches amount to symptom control, may be poor spectator sport but I think it does show they understand the issues and are moving things in a new and more helpful direction.

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