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UK Research Collaborative means business

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by Simon McGrath

stephen-holgate.jpg

Prof Stephen Holgate

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


The Players

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

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

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

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

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

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

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

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


Why it's critical for the ME Association to be in the Collaborative
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
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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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?
 
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).
 
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 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 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 ?
 
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.

 
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?
 
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!
 
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.
 
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.

-----
 
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.
 
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
 
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
 
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,
 
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.
 
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.
 
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).
 
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.