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UK Research Collaborative means business

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… add one }

  • Bob October 12, 2013, 6:04 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, 6:16 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, 6:24 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, 7:03 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, 7:04 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, 7:07 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, 7:14 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, 7:14 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, 7:26 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, 9:31 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, 9:39 am

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

  • Dolphin October 13, 2013, 2:00 pm
    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, 2:39 pm
    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, 4:08 pm

    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, 5:54 pm

    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, 11:50 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, 11:51 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 16, 2013, 1:05 am
    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 16, 2013, 1:23 am

    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 16, 2013, 2:40 am

    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, 4:28 pm
    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, 4:32 pm
    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, 4:48 pm
    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, 4:50 pm
    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, 5:47 pm
    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, 9:16 pm

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

  • Esther12 December 4, 2013, 2:51 am
    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 4, 2013, 4:30 am
    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, 3:21 pm
    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, 9:23 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, 9:31 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, 9:47 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, 10:29 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, 1:39 pm
    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, 12:28 pm
    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, 6:09 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, 6:14 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, 6:20 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, 6:25 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, 6:30 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, 7:30 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.