Launch of inclusive UK CFS/ME Research Collaborative

April 30, 2013

by Simon McGrath

stephen holgate

Prof Stephen Holgate

Last Monday, 22 April, saw the launch of the new UK Chronic Fatigue Syndrome/Myalgic Encephalitis Research Collaborative (CMRC). Set up by Stephen Holgate, MRC professor of immunology, and backed by the UK’s main research funders (MRC, Wellcome Trust and NIHR) it aims “to create a step change in the amount and quality of research into chronic fatigue and ME”. The launch featured some eye-catching provisional results that got good media coverage, particularly the study from Newcastle showing differences in lab-cultured muscle from CFS patients versus healthy controls. And an fMRI study found that patients had to use more brain regions to accomplish the same mental tasks as controls, confirming earlier work in this field.

Not everyone is happy

What’s not to like? Well, although it’s backed by most ME charities and almost all the UK’s biomedical researchers, the collaborative is deliberately a broad church including all types of research, including psychological research. And that has upset a good number of patients (as you can see on this thread: “read and weep…” was one pithy objection).

The ME Association acknowledges these concerns, but its Chair Neil Riley argues:

“The Research Collaborative is a big tent covering a wide range of views on causation, definition, epidemiology and management. We believe it is far better to be inside the tent discussing and debating these issues – as happened during the discussion session on Monday – than sitting outside where we would not have a voice.  …Provided the Collaborative drives forward and promotes research into the biomedical causes of ME then we shall be in there, taking an active part and supporting its efforts. “

Action for ME, AYME, the Chronic Fatigue Syndrome Research Foundation, The ME Association and ME Research UK all agree. The most significant ME charity choosing to remain outside the tent for now is Invest in ME, who have voiced their scepticism, arguing that what’s needed is exclusive focus on biomedical research.

Nonetheless, it was an extraordinary achievement to bring together such diverse views into a single collaborative. As Stephen Holgate says, “It is the first time this has ever been done anywhere in the world—to get buy-in from these different communities”.

A new era of Research in the UK?

a field that is in desperate need of new science
- Stephen Holgate

For the last twenty years, the study of CFS in the UK has been dominated by researchers with a biopsychosocial perspective, so it’s notable that the CMRC emphasises the need to do things differently. CFS is “a field that is in desperate need of new science”, says Stephen Holgate. At the meeting he highlighted several new areas and opportunities:

  • The application of state-of-the-art research methodology, including Genomics, Proteomics and Metabolomics.
  • Using the new Networks approach as powerful tools for integrating and modelling biological data. This systems-based medicine approach focuses on how biological systems interact within the body, rather than looking at changes in individual genes or proteins. Nancy Klimas’s Neuro Immune Centre in Florida, with Gordon Broderick providing network modelling, is a great example of this.
  • Emergence of large collections of biobanks. eg The UK ME-CFS Biobank and the CFI bio-bank in the States. Such well-characterised patient groups, with clinical and biological material, open the way to large-scale studies probing any number of biological mechanisms.
  • Holgate also wants to engage a wide range of new fields such as maths and environmental science who could all add to the party.

This looks to me like an agenda for cutting-edge biomedical research, particularly as he says:

By coming together in this way, the application of state-of-the-art research methodology… will greatly increase the chance of identifying pathways linked to disease causation and novel therapeutic targets.

As he’s said repeatedly in recent years: “The key to success will be the engagement of scientists outside the field”, drawing new blood into CFS research, bringing insights from other diseases, and encouraging young new researchers to study ME/CFS. Similarly, the MRC stresses the importance of proposals for research funding to include at least some researchers new to the field. And the MRC, who were at the launch, has a highlight notice encouraging specific biomedical areas, including neuropathology and immune dysregulation.

One other important area discussed was heterogeneity and case definitions, which is a big issue for the whole field. Stephen Holgate referred to CFS/ME as a ‘complex group of conditions’ ie multiple conditions with different aetiologies, and so ‘phenotyping’ – dividing patients into different groups on the basis of clinical information, or even biomarkers – is a priority too.

How will the new Research Collaborative make a difference?

It’s still very early days for the research collaborative and the organisers hope that many new researchers will join the CMRC and help shape its future. However, it’s already been agreed that there will be quarterly meetings between researchers and funding charities, divided into four different streams. The content of those streams will be decided at the first meeting of the CMRC on May 22nd. This meeting will also firm up research priorities, and a fundraising drive will be on the agenda too.  An annual CMRC science conference is also possible, but with such a new organisation, much remains to be decided.

Stephen Holgate knows that some patients will continue to doubt the value of the new Collaborative, and anything he says is unlikely to change their minds. However, he hopes that the efforts of the collaborative, and ultimately the results of new research stemming from it, will persuade those patients that this venture will be making a big contribution to understanding ME/CFS.

 

Simon McGrath has a science degree, and has watched not much happening in ME/CFS research for a long time, but now thinks things are finally kicking off. He occasionally tweets on research: follow @pSimonMcGrath

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55 comments

{ 55 comments… read them below or add one }

Sasha April 30, 2013 at 3:34 pm

Thanks, Simon – great article. I think a lot of us in the UK are simultaneously feeling excitement and caution. There's a lot of potential for great progress there but the psychological school has a very powerful grip on the media and the medical establishment and is deeply vested in its position. I think it's going to be a very interesting first six months with what have been seen as opposing forces inside that same tent and I'm looking forward to seeing what will come out of it.

Simon April 30, 2013 at 4:15 pm
Sasha

Thanks, Simon – great article. I think a lot of us in the UK are simultaneously feeling excitement and caution. There's a lot of potential for great progress there but the psychological school has a very powerful grip on the media and the medical establishment and is deeply vested in its position. I think it's going to be a very interesting first six months with what have been seen as opposing forces inside that same tent and I'm looking forward to seeing what will come out of it.

Thanks, Sasha

Yes, we don't know how things will turn out, but I am optimistic this will be very good for biomedical research. Stephen Holgate has been a key figure working in this for several years – as head of the MRC CFS/ME Expert group before this. That too involved both biomedical and psychological researchers, yet the main thing to emerge from it was the MRC's first ever ring-fenced fund for biomedical research. With him as Chair I don't think there is much danger of it being 'hijacked'.

At the same time I don't think there has to be a problem with having researchers with competing viewpoints in the same collaboration. There are researchers with competing viewpoints in many fields, and even where researchers share a similar viewpoint there can be immense competition between them (virology, for instance, has been described as a 'contact sport', which is perhaps one reason why the whole XMRV thing became so heated). This isn't necessarily a bad thing, and such competition can drive research to greater heights. Arguably one thing CFS has lacked has been robust testing of competing hypotheses, and such rigorous testing playing out in journals could be a positive step. What would help is all researchers working together to maximise interest in and funding for their field and hopefully that will happen here. It should be an intersesting ride.

Esther12 April 30, 2013 at 5:28 pm

Nice one Simon. Another good article for PR… you're on a roll now. I'd certainly like to see a robust testing of hypotheses for CFS – ideally before they'd been allowed to affect how patients are treated.

Simon May 1, 2013 at 12:42 am
Esther12

Nice one Simon. Another good article for PR… you're on a roll now. I'd certainly like to see a robust testing of hypotheses for CFS – ideally before they'd been allowed to affect how patients are treated.

:) And thanks

snowathlete May 1, 2013 at 7:36 am

Thanks Simon, a very well-pitched article! And informative, as always!

I am cautiously optimistic that this collaborative will be a positive thing on balance. Sure, we'll continue to get some dodgy science in the UK, some of which may even come from within this collaborative, but we know that we'll get some good research from this collaborative too, because some of the people involved have already shown their support for ME/CFS being a physiological condition.
It's also very hard to change things from outside as you dont real dialogue with those people who hold conflicting views, if you are not involved and when those people inside have the attention of the press and you dont, so hopefully this collaborative will be beneficial in that regard – Newton’s muscle work already being covered in the Times, to me, seems like quite a big step forward.

Sasha May 1, 2013 at 8:24 am

I agree – although I'm cautious I think it's a great idea to have everybody in the same tent because each camp gets exposed to evidence on the other side.

Edit: There seem to be a lot of camping metaphors creeping into my prose! :D

maryb May 1, 2013 at 8:52 am

You asking me to share a tent with creepy crawley's;)

jimells May 1, 2013 at 10:57 am
Sasha

I agree – although I'm cautious I think it's a great idea to have everybody in the same tent because each camp gets exposed to evidence on the other side.

Edit: There seem to be a lot of camping metaphors creeping into my prose! :D

It's a camping tent? I thought it was a revival tent, or maybe a circus tent…

I just have one little itty bitty question: How much money did they budget for research?

maryb May 1, 2013 at 11:25 am

[quote="jimells, post: 351706, member: 4373 ........ or maybe a circus tent... [/quote]

:lol::lol:

Sasha May 1, 2013 at 11:33 am
jimells

I just have one little itty bitty question: How much money did they budget for research?

I think they're basically a network and they want money (forming a consortium is often a good way to get it):

However, it's already been agreed that there will be quarterly meetings between researchers and funding charities, divided into four different streams. The content of those streams will be decided at the first meeting of the CMRC on May 22nd. This meeting will also firm up research priorities, and a fundraising drive will be on the agenda too.

Simon May 1, 2013 at 1:50 pm

ME Association poll: patients narrowly in favour of charities joining the new collaborative

The MEA Quick Survey
Should ME/CFS charities that fund/support research be joining the UK Research Collaborative?

As of 7.45pm GMT only 73 votes cast, so this is really just for fun, but:
In favour: 51% (definitely 22%, with caution 29%)
Against: 43% (definitely not 33%, probably not 10%)

Tiny sample, though not quite the ringing endorsement the charities were presumably hoping for.

Thanks to @TomKindlon for tweeting

Esther12 May 1, 2013 at 2:10 pm

I'm surprised so many people are voting 'definitely not' – so far I can't see any reason why the MEA's involvement is a bad thing. I rarely go for 'definitely' anything! I went for 'yes – with caution'.

I understand people being wary though, given the way it was promoted, failure to acknowledge past problems, and some of the people involved.

Firestormm May 2, 2013 at 2:47 am

Dr Shepherd in reply to some concerns expressed on Facebook yesterday:

I am beginning to despair at the way I keep having to correct internet misinformation about the new UK research collaborative.

Firstly, the collaborative is bringing EVERYONE together who is involved in ME/CFS research – that includes ALL specialties, new and potential researchers, research funding (or supporting) charities, respresentatives of the pharmaceutical companies (in due course) and government (MRC, NIHR, DoH). So the membership will be right across the spectrum from neurology and immunology to psychiatry and psychology. Nobody is trying to hide anything. It is forum where the whole spectrum of opinion is involved – which is why many of the well known names across the research spectrum were at the launch meeting at the Wellcome Collection last week and some of them will be more actively involved. It is, as I keep saying, a very big tent and the ME/CFS charities that are signing up to join (I think the number is now 7) accept that this is the case.

Secondly, it is quite likely that the UKRC is going to play a major role in stimulating new research funding, new research infrastructure (bricks and mortar) and academic acceptance of ME/CFS in hospitals and universities (something that is very sadly lacking at present). We believe it is is better to be inside the tent putting your point of view than complaining about what is happening from outside the tent and (in some cases) trying to drown this initiative before it has even started to swim.

Thirdly, this means that there will be differences of opinion being expressed among those involved. This has already happened. But that is how the scientific process works and moves forward and we (ie MEA) want to be involved in this process and debate. I am not afraid of stating what I believe.

Fourthly, being a member of the UKRC does not mean that a charity can no longer make constructive criticism of the PACE trial, the Lightning Process, NICE or any other topical issue. Our position on NICE remains unchanged. I will continue to refer unsubstantiated therapeutric claims to the ASA or Trading Standards. We will continue to criticise the PACE trial in the way that we have done in our letter to Psychological Medicine. Which other ME/CFS charities submitted comprehensive responses to the PACE trial recovery paper?

Fourthly, the collaborative will NOT be raising money to set up yet another a research pot to distribute funding to researchers. It will NOT be promoting psychiatric research in preference to biomedical research. If this was the intention we would not have joined. If this were to ever to be the case we would not want to be a member.

Fifthly, the MEA Ramsay Research Fund will not be changing its remit. It is there to fund biomedical research into cause and treatment. Our current projects include funding the ME Biobank (now in its second year of operation at University College London) and Disease Register (being set up at New University Buckingham), post-mortem research (building on the abnormalities, including dorsal root ganglionitis, already identified), a study on the pathophysiological mechanisms involved in post-exertional malaise, research into muscle/mitochondrial abnormalities and a sleep management study. At our last Board meeting we provisionally accepted a further item of biomedical research relating to the neurology of ME/CFS. Total funding for these current and future studies alone exceeds £200,000. As a patient support charity we are proud of what we have also been able to achieve in fundinfg biomedical research and will continue to do so.

I could go on but it's late and I've had a very demanding week……

Simon May 2, 2013 at 7:15 am

Thanks to the ME Association for posting my blog on their site: http://www.meassociation.org.uk/?p=15299

Latest poll now running 51% to 41% in favour (131 votes)

Simon May 2, 2013 at 11:10 am

notes from AfME trustee who was at the meeting

Tony Golding's report here, but I've highlighted some key points [all bolding is mine]

120 researchers at the conference, plus another 20 others, which is a pretty impressive turnout.

Encouraging things about funding

The current chair of the MRC’s Neurosciences and Mental Health Board (which is responsible for funding research into M.E.) is Prof Hugh Perry, Professor of Experimental Neuropathology at Southampton. He was in the audience.

This is very encouraging, especially as he has published on CFS before, and was involved in the MRC CFS/ME Expert Group, and gave a talk at last year's IiME conference: "An Overview of Neuro-inflammation in Chronic Disease"

Speakers from the MRC and the National Institute for Health Research (NIHR), which actually has a bigger budget than the MRC, emphasised that, while things have improved, there was an urgent need to create “more capacity.” In other words, to encourage more researchers from fields adjacent to M.E. to put forward proposals for research into M.E.

In January 2011 the MRC issued a Highlight Notice asking for proposals. Ten were received from which they selected five. [my note, a 50% success rate is very high] They have now issued a second Highlight Notice. The NIHR complements the MRC by investing in people rather than projects. Again, the message to the M.E. researchers in the audience was: “Come to us. We will invest in you and your project if we like what we see.”

… Prof Holgate ended the day with a further call to the audience to apply for grants from the MRC and/or the NIHR. The MRC, in which he has been involved since 1995, really wants to see more proposals from researchers and is highly receptive.

More interersting stuff from Stephen Holgate

[about Stephen's talk]: [on role of technology etc: “A range of new science fields are beginning to impact on a complicated disease”. These new techniques will help us identify the differences between individuals and, similarly, help to identify M.E. sub-groups. To take advantage of these new opportunities requires greater pooling of resources and knowledge: “joined-up thinking,” as Prof Holgate put it.

What this means is that we should not look at M.E. research in isolation from other similar – and often overlapping – illnesses. Studying these can often tell us a lot about M.E. Consequently, more and more medical research is grouped around themes. A good example is the cluster of ongoing M.E. research projects (ten, by my estimate) based in and around the Institute of Aging and Health at Newcastle University, headed by Prof Julia Newton.

...[later, re Zoe Gotts talk on sleep problems in CFS] Interestingly, as another illustration of a research theme, this work is being done under the auspices of the Northumbria Centre for Sleep Research.

from presentations about specific projects

A young researcher from Northumbria University talked about her sleep research. So far, she had identified four different types of sleep (or indeed non-sleep) experienced by people with M.E.

Prof Julia Newton talked about her work on the autonomic system. Her studies have shown demonstrably that people with M.E. have an autonomic dysfunction. Again, this research is not aimed at M.E. per se but is being done as part of her work on fatigue, as it is a generic symptom for many illnesses.

Her colleague, Wan Ng, talked about his work on autoimmune diseases and how he believes that, in M.E., and other similar illnesses the immune system is not “switching off” when it should but is acting against itself.

Professor Carmine Pariante at Kings College, London, is looking at what triggers the hyperactive immune system response in M.E. Life events produce stress which is often a trigger, and stress has a measurable biological impact.

concluding comment from Stephen Holgate:

It is his earnest hope that, this time next year, there will be a second Collaborative conference in which the presenters will demonstrate evidence of new projects, new thinking and new researchers in the M.E. field.

Thanks to Tony Golding for making these notes and to AfME for publishing them.

Enid May 2, 2013 at 12:34 pm

Looking positive to me at last – thanks Simon.

justinreilly May 2, 2013 at 3:13 pm

I think MEA should be at the table, which doesn't mean they should give in to the fake science. Quite the opposite. They must speak up against any fake science that is attempted within this collaborative.

Simon May 2, 2013 at 3:47 pm
Enid

Looking positive to me at last – thanks Simon.

Great, that's made my day :)

Latest from the ME Assoc poll: 56% 'Yes, join in' vs 36% No

Just one more thought: the 5 ex 10 success rate for pitches to the MRC mentioned in Tony's report is very high, and even more strikingly the MRC immediately launched another highlight notice inviting more proposals after funding the 5. Previously, it had always been argued that the problem was simply the lack of good proposals to the MRC and that's why biomedical work wasn't funded. Stephen Holgate commented:

"It is the MRC initiative that has led to this collaborative mainly because it demonstrated to us that high quality work could be done.

That's a huge turnaround.

nasim marie jafry May 3, 2013 at 4:41 am

Great article and summing up of the state of play, thanks! While I welcome all research into properly defined ME, I don't trust the biopsychosocials a jot, my hope is they will now fade away and leave the field of research open to true scientists, I blogged here last week: http://www.velo-gubbed-legs.blogspot.co.uk/2013/04/too-much-lactic-acid-in-her-legs.html

jimells May 3, 2013 at 8:32 am

I think a cautious endorsement of the new collaborative is a reasonable approach. If the Wessely School manages to seize control, that would be a good time to raise Hell and publicly resign.

One potential problem I see with creating yet another institution is the amount of time, effort, and money that goes into simply sustaining the organization without actually accomplishing anything useful. If they start renting office space and hiring staff, look out.

The World Social Forum comes to mind. It has sucked up huge amounts of money over the years. Boatloads of small groups spend so much effort sending delegates that there's not much left over for their original work. And what do they have to show for it? Not much, as far as I can tell.

I do appreciate Dr Holgate's efforts on our behalf. I wish him well, and many thanks to Simon for writing another fine article.

snowathlete May 3, 2013 at 1:13 pm

MAY BE REPOSTED

STATEMENT BY THE YOUNG ME SUFFERERS TRUST

The Young ME Sufferers Trust is issuing this statement to clarify our
reasons for not accepting an invitation to the launch of the UK CFS/ME
Research Collaborative in London on 22nd April 2013. We will not be
participating in the Collaborative.

Key issues

*Our research priority
This Collaborative is continuing down the chronic fatigue route. By
contrast, our priority is to end the confusion of including ME (myalgic
encephalomyelitis), understood for decades by microbiologists as a
persistent viral infection, under the umbrella term of CFS (chronic
fatigue syndrome) which mixes patient cohorts and confounds definitions,
research and treatment.

Good quality biomedical research, relevant to ME, is vital. We ourselves
co-funded such a study which showed blood abnormalities in children,
consistent with a persistent viral infection. Our research priority is
for enteroviral studies. Years of research by virologist Dr John Chia of
the Enterovirus Foundation is validating ME as a persistent viral
infection; his work on 'CFS/ME' should surely be repeated in the UK
under ME criteria, for it could be that, in future, vaccinations and
antiviral drugs will be effective.

*The Collaborative Charter
We would never sign up to such a Charter. This Charter, which
Collaborative members must adhere to, contains 'gagging' clauses which
appear to us to equate legitimate criticism and concern for patients
with harassment. In our view it is intimidatory and entirely against
transparency.

*Charities
We believe that charities signing up to this Collaborative and its
Charter are repeating the mistakes of history, some examples of which
are detailed in our address to the Scottish Cross Party Parliamentary
Group on ME in 2004. You can find this address here:
http://www.tymestrust.org/txt/view200403scottishparliament.txt.

*Direction
Back in 1996, the national charities of the time rolled over and
accepted the term 'CFS' as a result of the Royal Colleges Report, where
the lead was taken by the psychiatrists. Subsequent events have proved
that it is unwise to compromise on one's principles, and the Trust will
never do that.

The Young ME Sufferers Trust
http://www.tymestrust.org

Sasha May 3, 2013 at 1:35 pm

I can understand there being a range of opinion on this. I don't think it's unhealthy to have some groups in, some groups out.

I think time will tell.

maryb May 3, 2013 at 2:09 pm

'gagging clause' – very interesting and who's surprised?

justinreilly May 3, 2013 at 2:41 pm

This "gag clause" sounds really bad. I think we could use a look if anyone has a copy.

Esther12 May 3, 2013 at 9:07 pm

"3.2.3 Members will be required to sign a declaration that they will not take part in the harassment or abuse of researchers. Neither will they take part in orchestrated campaigns against those conducting peer-reviewed research."

Presumably it refers to that part of the charter.

There's some discussion of what this means starting here: http://forums.phoenixrising.me/inde…search-collaborative.22875/page-2#post-351875

Simon May 4, 2013 at 4:48 am
Bit more on how the CMRC will work/what it might do
jimells

One potential problem I see with creating yet another institution is the amount of time, effort, and money that goes into simply sustaining the organization without actually accomplishing anything useful. If they start renting office space and hiring staff, look out.

I do appreciate Dr Holgate's efforts on our behalf. I wish him well, and many thanks to Simon for writing another fine article.

Fear not, no offices and an unpaid executive. Here's some stuff taken from the CMRC Charter

4.1.1 The executive will include a [unpaid] chair, deputy chair, secretary, a total of 5 researchers and 5 charities.

Even though the chair and deputy are researchers, and presumably will be in future too, that still gives charities a big role, esp in an organisation where the vast majority of members are researchers.

Activity focused on 'work streams'
We already know there will be quarterly meeting of researchers and charities in four 'work-streams', which appear to be the main workhorse of the new organisation. The nature of the work streams has yet to be finalised but in the charter it says:

4.2.2. Executive members will contribute to work streams which will be agreed at each members meeting [AGM], for example:

  • Infrastructure development;
  • promoting CFS/ME research;
  • increasing funding.

…Facilitate investment in essential research infrastructuree.g. bioresources, technology platforms, well phenotyped patient cohorts

I'd thought they might be focused on research areas, but obviously not.

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.

The Executive will meet at least twice a year in addition to at the AGM. Note too that all members of the Exec have to be involved in workstreams too, indicating it's a proper working group rather than a talking shop.

A common strategy?

[objectives]2.2.1 Develop inform and update a national strategy for CFS/ME research

Will be very interested to see how that pans out, given the diverse views of those within the CMRC.

David Egan May 5, 2013 at 11:26 am

I agree with Dr. Charles Shepherd that we all should give this CFS/ME Collaborative a chance to work. I would like to ask Dr. Shepherd and others involved in this Collaborative the following:
1. what direction will it move in. Will it deepen existing research into viral / mycoplasma / bacteria / parasite / Borrelia infections in ME/CFS patients including infection of spinal fluids, nerve tissues, intestinal tissues which are rarely examined ?
2. Will it deepen existing research into immune system abnormalities and dysfunctions in ME/CFS ?
3. Will it deepen existing research findings into neurological dysfunctions, especially ANS dysfunctions ?
4. Will it deepen existing research findings into mitochondria and HPA axis dysfunctions in ME/CFS ?

Certainly, if it did the above 4 things, we could actually begin to make some progress in ME/CFS. I have outlined a few more biological areas which should be examined and which could help us understand the illness better at http://www.cfs-ireland.com
I noted the involvement of psychiatrists. I just wonder if it is possible for psychiatrists to cure viral illnesses, autoimmune illnesses and other such biological illnesses ? If it is possible it would be a great new revelation to science and medicine ! though I doubt it exists. But one never knows these days as all sorts of claims of "miracles" abound.

justinreilly May 6, 2013 at 1:14 pm
Esther12

"3.2.3 Members will be required to sign a declaration that they will not take part in the harassment or abuse of researchers. Neither will they take part in orchestrated campaigns against those conducting peer-reviewed research."

Presumably it refers to that part of the charter.

There's some discussion of what this means starting here: http://forums.phoenixrising.me/inde…search-collaborative.22875/page-2#post-351875

Thanks Esther. I totally agree with the tynes trust that this gag clause is completely inappropriate as it bans "orchestrated campaigns against researchers." I find that clause immoral since we are In a situation like the Tuskegee experiments. We must campaign against the abuse of ME patients conducted by researchers.

Now I am having doubts about MEA and other orgs joining and submitting to signing this inappropriate clause.

justinreilly May 6, 2013 at 1:35 pm

Why isn't there a charter clause banning "lying and otherwise misrepresenting the facts about ME and conducting fake science with fake definitions of "CFS", promoting dangerous 'treatments' such as GET or otherwise abusing ME patients"?

Bob May 16, 2013 at 7:20 am

Very interesting interview with Julia Newton, including some of her thoughts about the UK research collaborative:
http://www.prohealth.com/library/showarticle.cfm?libid=18065

lansbergen May 16, 2013 at 7:37 am
Bob

Very interesting interview with Julia Newton, including some of her thoughts about the UK research collaborative:
http://www.prohealth.com/library/showarticle.cfm?libid=18065

Interestingly, when we look at the muscle, brain and hearts of those who have had all three of these investigations there is a relationship between the abnormalities that we have found suggesting that any problem is not just related to one organ but is generalised across a number of organs.

Interestingly acid accumulation in the muscle is controlled by receptors or transporters on the muscle cell wall and some of these transporters are regulated by the autonomic nervous system so that would be one way that it works.

She does not say lactate/lactic acid.

It is important to point out at this stage that the muscle and cardiac abnormalities that we have seen in patients with ME/CFS are exactly the same as those that we have seen in patients with PBC and we have published these studies too which is one of the reasons I am optimistic that the results of the PBC study might apply to the ME/CFS too.”

Firestormm May 20, 2013 at 2:11 am
lansbergen

She does not say lactate/lactic acid.

Not specifically here, no. But the inference is that this is what she is talking about, and indeed did specifically talk about in her presentation to AFME at their conference (transcribed previously).

Q: One of the things that you talked about at the launch of the Research Collaborative, and that was picked up recently by the Times, was high levels of lactic acid in exercises muscle tissue grown from cultures taken from CFS patients. You talked a little bit about this study back at the Action for ME conference last autumn and I seem to remember that they funded part of it, but it sounds like you have finished, or are close to finishing your investigations?

“Goodness me, it is amazing how things you say come back to haunt you!

“There are a number of strands to the muscle biopsy work. We have been able to show that we can exercise muscle cells in the laboratory and get similar findings in the laboratory as we have seen in the MRI scans. So we have been exercising muscles and looking at what happens to these and whether or not any acid that we accumulate is potentially reversible.

We are confident that the acid accumulation is reversible but the Action for ME funding is now directed at a 50% PhD student who is going to start looking at other drugs in this muscle system so that we can begin to tease out where the abnormality might lie and whether it is amenable to currently available drugs.

So the initial development of the model and showing that it replicates the MRI is almost finished and we are in the process of writing this up at the moment and the next stage is to really begin to drill down in this model where interventions could best be directed.”

Q: Your research is primarily focused on the integrity of the autonomic nervous system (ANS) in diseases, including ME/CFS, where you have reported several serious anomalies including general dysfunction, heart problems, decreased blood flow to the brain, etc. How does this fit with the finding of lactic acid in muscle cells?

“That’s a good question. Interestingly acid accumulation in the muscle is controlled by receptors or transporters on the muscle cell wall and some of these transporters are regulated by the autonomic nervous system so that would be one way that it works.

Another way could simply be that the acid that is released from muscle cells is washed away and therefore is dependent upon the vascular system to ensure run-off of acid as the muscles exercise. The autonomic nervous system regulates the caliber of the blood vessels around muscles and this could therefore influence the muscles ability to get rid of acid.

“One of the studies that we would really love to do is to look at developing muscle MRI techniques that can measure blood flow in the muscles as they exercise so that we could directly measure blood flow and how it relates to muscle function.

In terms of blood flow, interestingly, acid in the blood – or the pH of your blood – plays some part in determining cerebral blood flow, so that pH is very important and has effects upon blood flow because it regulates blood vessel dimensions.”

Q: Thank you Dr. Newton, for taking the time to tell us about the work of you and your team. Any final comments?

“I can’t emphasise enough to anyone reading this to understand how important it is that we solve the problem of this terrible disease. But we can’t do it unless patients, scientists and clinicians work together.” :)

lansbergen May 20, 2013 at 3:02 am
Firestormm

Not specifically here, no. But the inference is that this is what she is talking about, and indeed did specifically talk about in her presentation to AFME at their conference (transcribed previously).

I will wait for the paper.

Bob June 3, 2013 at 2:25 pm

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

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

Firestormm June 4, 2013 at 3:38 am
Bob

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

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

Thanks Bob. I picked this up and read on the MEA's site this morrow.

BACME are onboard 'representing clinicians' according to the summary – important representation I am sure you will agree, even if we might not necessarily agree on the direction this Group have taken in some respects until now.

Charles Shepherd made the following comments – out of interest – in reply to more 'concern' being expressed on Facebook earlier:

As I keep saying, the UKRC 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

There are major challenges ahead in relation to research priorities and funding and the psychiatrists are NOT going to go away

So I have always taken the view (and I know it's unpopular) that part of the research agenda has to involve sitting down and discussing/debating with people you may not always agree with

To those who say that the research funding medical charities should not be taking part in the UKRC I would ask:

Would it be better for people with ME/CFS if we were not forming part of an Executive (remember the charities have five seats here – as do the researchers) of a powerful multidisciplinary research organisation that involves people from the MRC, NIHR, other major funding bodies, politicians and (in due course) the pharmaceutical industry.

I think it would be crazy to just say no and and not have any charity involvement

I would also point out that being a part of UKRC has no effect whatsoever on all the other research funding and research collabortive initiatives that we are actively involved with (I am a member/UK representative of the OMI MERIT group for example and attended the meeting in New York last year)

And we are still perfectly free to criticise the PACE trial, NICE etc – in fact, the MEA is the only ME/CFS charity to have a reply accepted by Psychological Medicine in response to the paper on 'Recovery' in the PACE trial and we continue to regard the NICE guideline on ME/CFS as 'not fit for purpose'

So should we really be saying that we do not want to have a say that top table of the UKRC?

Couple of points I plucked from the Summary that interested me:

SH opened the meetings and welcomed ES to the group who has now joined as an observer. SH noted that as this was a follow-up debriefing meeting from the launch, the number of participants was lower than would be expected in future meetings, with a higher number of researchers committed to attending.

I actually think it is/will be important to have the Science Media Centre attending even/especially as observers. We could do with some positive press. Sure you'd agree. And this could mean a better chance at least of receiving some. Though equally, it might not (my 'nod' to the critics).

The fact that a 'higher number of researchers' are committed to attending future meetings is a positive from my point of view. We need I think in this country especially MORE opportunities for interested parties to come together in the same space and TALK as well as LISTEN and SHARE. I believe this is termed – NETWORKING in modern parlance :)

I suppose some might be concerned that the researchers in future will comprise those of the 'mind' but we will have to see. Personally I think this venture will build and in future years and more and more research comes on-line; this collaborative will grow. And, yes, even the likes of IiME will find it harder to sit on the sidelines.

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

This was especially welcome news. Finally, an open acknowledgement about the bloody prevalence rates. For me this cuts to the chase about how you diagnose our condition and, obviously, how this impacts on the country at large. The better the ability of the diagnostician to discover what else might account for the presented symptoms – the greater the chance a person may not end up in the 'melting pot'. We know this – it's about time it was acknowledged.

Will the prevalence rates used in the UK reach some scientific compromise? Possible. What I hope to see for now is that at least press releases will provide a RANGE of prevalence e.g. 0.4-1.0 or something. An acknowledgement that 'they simply don't know' and/or it depends on who is doing the diagnosing. Actually, what should happen is that the NICE prevalence range should be used exclusively (0.2-0.4% from memory) UNTIL a scientific study can confirm actual NICE-based-criteria prevalence.

Of course this all depends on further negotiations and compromises about how diagnosis should be made and whether any improvement can be made on NICE at this moment in time or is it worth waiting for the various studies currently being undertaken to be published. Not my decision but I suspect for now, we might see the 1-2% prevalence figures DROPPED from SMC press releases.

I do hope so. I spent a very long time with a film crew trying to explain why the 1% figure (in relation to economic loss) was incorrect).

The acknowledgement about 'independent positions' not being compromised is important in this regard. Indeed one might say that this underlines the whole venture. Each 'person' will have their own beliefs based on experience and science etc. Nobody is asking them to surrender those beliefs – but it is about negotiation and compromise at the end of the day; and we must move forward.

I doubt if it will always be a smooth ride but we have to start doing more of this collaborative stuff.

For future meetings, the Executive Board will have a number of observers which includes all three main research funders (Medical Research Council, National Institute for Health Research, Wellcome Trust) and BACME (to represent clinicians).

It would be good to have parliamentary input and this will be discussed with the All Party Parliamentary Group.

The Executive Board itself is representative of all key disciplines (immunology, virology, epidemiology etc.) but there is a gap re nursing. SH will seek to fill this vacancy.

Great! Key thing is to keep this manageable with clear objectives for each meeting. Too many views and this will become cumbersome. Independence is cool but at the end of the day, we ALL have the same objectives I think.

It would be good to see someone from the GMC onboard (that's the body Clare Gerada represents isn't it?) or someone that oversees/represents those GPs on the front-line; but it's great that they will seek a nursing representative.

One of the aims of the Collaborative is to stimulate more funding for research and to support a strategic approach for future funding.

The Medical Research Council has four identified priority areas within their Highlight Notice but there are other gaps that the Collaborative may wish to prioritise in respect of their activity.

Research priorities identified were severely affected and epidemiology (including sub grouping/ phenotyping).

Signing up to the research priorities would in no way undermine the charities’ independence with regard to their own research activities.

It was therefore 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.

Alongside subject areas, the Collaborative could explore studentships, joint fellowships and bursaries to increase access to research in the field for early career researchers.

I almost dare anyone to knock this statement, but am probably tempting fate as it is :)

An attendee at the event who has a journalism background has put forward some great suggestions regarding the development of a website.

UK Plc catches up with the modern world! It is important to ensure a rapid and accurate flow of information and what better than a website? Well, Facebook, Twitter, live video-streaming… etc. etc. ;)

The Board discussed the potential for having ‘severely affected’ as a workstream but felt that the need was such that it should be put forward 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.

There has also been an expression of interest in working with the Collaborative from a pharmaceutical company. It was agreed to invite them to present to the Board to identify what value they would create and what they could contribute to support the workstreams, especially with a focus on funding.

Knock that! :)

There will be an annual event for researchers which could provide a combination of learning/development through showcasing of research projects alongside time to develop collaborations for new research projects. JM offered to combine the workshop for the MRC-funded researchers in this field to maximise the use of resources, learning and collaboration. SH offered to contribute to the cost of venue etc. and could offer facilities through Southampton University. These generous offers were welcomed by the Board.

An Annual Conference. I mean Wow! :)

Anyway, back to work… ;)

Bob June 4, 2013 at 5:17 pm

Firestormm, don't get me wrong, I am open minded about this venture, and I really hope it succeeds as we want it to, but unfortunately I do not share your unfettered optimism about it. (If it's possible to be open-minded, hopeful but sceptical at the same time, then that's how I feel about it.) Looking at the members of the collaborative, I cannot see how certain members of the executive are going to agree to funds being channelled into meaningful biomedical research. But we will see. I have an enormous amount of respect for Prof Stephen Holgate, who seems enormously capable at getting things done, so I hope he will help guide it in the right direction. And I do think it was a good move for the charities to get involved. However, considering past experiences in the world of ME research, it is not surprising that some/many patients have reservations about the collaboration. Let's hope for the best, and see how it pans out.

Firestormm June 4, 2013 at 11:20 pm
Bob

Firestormm, don't get me wrong, I am open minded about this venture, and I really hope it succeeds as we want it to, but unfortunately I do not share your unfettered optimism about it. (If it's possible to be open-minded, hopeful but sceptical at the same time, then that's how I feel about it.) Looking at the members of the collaborative, I cannot see how certain members of the executive are going to agree to funds being channelled into meaningful biomedical funding. But we will see. I have an enormous amount of respect for Prof Stephen Holgate, who seems enormously capable at getting things done, so I hope he will help guide it in the right direction. And I do think it was a good move for the charities to get involved. However, considering past experiences in the world of ME research, it is not surprising that some/many patients have reservations about the collaboration. Let's hope for the best, and see how it pans out.

There is ever an obvious risk about expressing 'unfettered optimism' of course, Bob ;) and I am sure such optimism will serve to 'bite me in the arse' :)

This initiative will not be a smooth ride. Such things seldom are when we are driven by our own personal experiences, needs and beliefs. Still, I maintain that this effort is much better than any alternative.

We could continue to move along disparate courses of independence – with all parties moving along their own paths and 'never the twain shall meet' or we could get behind, get involved, support, this effort and those who are trying to see beyond their own firewalls.

Perhaps in bringing people together we will see some desperately needed sparks of innovation be nurtured in the UK and a continuing priority effort within the MRC.

Gerada commented at the IiME conference – as you know – that ME requires specialist provision and not more-educated GPs necessarily. This could also receive the support and subsequent funding, out of an effort that involves NICE and will involve – hopefully – government representatives.

I'm simply trying to look ahead – as well as considering where we have come from. If, for example, specialist provision is – again – given some priority then perhaps with this collaborative behind it from the start we might see a more effective implementation than the last time.

A government-led initiative at a clinical level is more likely to have a greater effect than any independently funded and led one. Imagine another £8 million (not that I can imagine such a sum in today's climate) directed at specialist provision across the country; or a lesser sum ensuring coverage in areas with no specialist at present; or ensuring clinical specialists where currently only therapists exist…

And we also need to think about the future in terms of those who are now more involved and dedicated to ME getting older and retiring – leaving the field. This collaborative could serve – should hopefully serve – to stimulate and sponsor more newcomers to become the leaders of tomorrow. And if those newcomers were less-likely to be of the 'mind' as a result of this collaborative – then I think we should give it our support.

A lot of focus across the water in the USA of late has been on 'networking' and large central initiatives directed at collating data – BioBanks and Patient Registries etc. Such things will stand a far better chance of being supported and then used effectively/made more available to the scientific community – if they are supported by such a collaborative.

Dare I compare this collaborative in some way to the FDA's more recent initiatives? To the raising of ME to 'serious condition' status? Another acknowledgement from the establishment that ME deserves to be taken seriously? Another example of change for the better perhaps?

Or perhaps this collaborative of the little olde UK is less formal? I mean nobody here is in uniform ;)

We will not like everything that flows from this effort – I do know that much. It will be about negotiation and compromise in certain respects – what isn't? But I'm prepared to give it a fair crack of the whip. The alternative is far more worrying I think.

Esther12 June 5, 2013 at 6:10 am

I think that the collaborative is probably worth being a member of… but I'm not sure, and I think that it's possible that it would have been better to have had the main charities just go on the attack, and push for the release of data from PACE which followed the trial's protocol and more accurately indicated the efficacy of treatments.

It's possible that good new research will help patients soon… but I think that a more reliable way of improving things would be to try to undo the harm done by poor and spun research. I don't think that more research is necessarily a good thing. Less research, but done to a higher standard would probably be preferable imo.

Also, re the SMC involvement – they are hacks. They've recently been celebrating their role in the way PACE was presented to the media, and the way that they were able dum up concern about anti-psychiatry CFS patients while glossing over the problems with the poor psychiatric research which surrounds CFS:

SMC ran second brainstorm in early 2013 to discuss what can be done –

Maudsley Charity (previously South London and Maudsley NHS Trust Charitable Funds) awarded the SMC a grant of £10,000 p.a. for 3 years –

The SMC's work on mental health research has produced more awards than any other area of our work.

The SMC ourselves won the European College of Neuropsychopharmacology’s inaugural Media Award for science in the media for our championing of evidence-based science in the face of received wisdom, public prejudice and special interests, and our efforts to ensure that the most critical issues currently affecting science and public health are debated on the basis of accurate and objective scientific information.

Tom Feilden, science correspondent for BBC Radio 4’s Today programme, won the UK Press Gazette's first ever specialist science writing award for breaking the story the SMC gave him about the harassment and intimidation of researchers working on CFS/ME.

The SMC had nominated him for the award.

Tom Feilden was shortlisted for a Mind Media Award for his package that came directly from an SMC briefing on the role of mental health experts in Broadmoor Hospital.

The SMC jointly nominated Simon Wessely for the inaugural Sense About Science John Maddox Prize for Standing up for Science for his courage and bravery in speaking out on CFS in the face on intimidation, which Simon won.

<>

Tom Feilden, science correspondent, BBC Radio 4 Today programme said:

“Despite being such an important part of the health care agenda, mental health is often overlooked by the mainstream media. Claire Bithell's tireless efforts behind the scenes at the SMC have helped us address that problem on the Today programme. Recent examples include features on self harm, schizophrenia, and exposing the abuse and intimidation suffered by researchers working on chronic fatigue syndrome. We certainly wouldn't be up for a Mind Media Award [for our series "Inside Broadmoor"] without her.”

<>

Supporting experts targeted by extremists

We have also been involved in supporting experts who have found themselves being targeted by individuals or groups who do not like their research.

This has been particularly important in the case of psychiatrists and psychologists working on chronic fatigue syndrome/ME.

These researchers have found themselves in the firing line from a small group of extremists who are opposed to psychiatrists or psychologists doing research on chronic fatigue syndrome/ME.

The SMC ran a press briefing on the first findings from the PACE trial, and supported the researchers involved throughout this process, for example, by organising media training in collaboration with the MRC.

When we became aware of the level of intimidation researchers were experiencing we brought together key parties for a brainstorm to discuss what could be done to aid researchers.

At this event it was agreed that these harassed experts should speak out publically about the harassment they were experiencing.

As a result the BBC Radio 4 Today programme ran an exposé on the piece (http://www.bbc.co.uk/news/science-environment-14326514) and a number of outlets followed the story including the Observer (http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis) and the Daily Mail (http://www.dailymail.co.uk/health/a…reats-investigating-psychological-causes.html).

For some researchers this media work has dramatically reduced the harassment they are experiencing.

For others, however, things have not improved.

So the SMC ran a second brainstorm in early 2013 to discuss what can be done.

It was agreed that more must be invested in putting the case for research of chronic fatigue syndrome/ME explaining the burden and seriousness of the disease both to the media and the public.

The SMC will look for opportunities to do media work in this area.

<>

One of the consultation findings was that psychiatry is particularly badly portrayed in the news media so the SMC has concentrated a lot of effort on getting to know academic psychiatrists.

This has been a great success, however we do not have as many academic psychologists on our database and do not have as good contact with the research community in this area.

We could do more to engage with this subject area.

Action point: the SMC makes contact with more academic psychologists and ensures they are well represented on the SMC database.

<>

Seizing the agenda

As well as breaking stories of new research and responding to mental health in the news, the SMC has also helped to set the agenda and frame the narrative of reporting on a number of big issues.

Previous to our background press briefing on DSM 5 few of the UK based science journalists knew about the unease amongst UK scientists.

The background press briefing generated vast media coverage and informed the UK’s most important health and science reporters of the issues of concern.

The SMC followed this up with several Roundups including comments from large numbers of the UK’s top mental health researchers, all generating continued media coverage.

This kind of agenda setting was also on display in our work around the harassment and intimidation of researchers working on chronic fatigue syndrome/ME.

The meeting organised by the SMC on this was the first of its kind and brought the beleaguered researchers together with representatives of funding agencies, the police, the GMC etc.

One of the results of that meeting was the decision of a number of academics to go public on their situation with the support of the SMC and their respective press officers .

The SMC engineered the coverage through working with the Today programme on an exclusive – a story that was planned over many weeks.

The result was huge with Today making the very best of their exclusive with several different packages on the morning of release.

As expected the follow up was huge with almost every newspaper, Sunday paper and influential magazine covering the subject in some way.

The results of that coverage have been mixed but include the following:

Many in the scientific community became aware of the situation having previously been unaware

For some researchers the media coverage marked the end of their harassment.

For others it has continued

Across the board the researchers who were interviewed received a huge amount of supportive emails from fellow scientists and from chronic fatigue syndrome/ME patients and their families

Conclusions

A mental health research function has been established at the SMC and has tackled a wide range of issues.

We work with a robust network of experts, press officers and journalists that all influence our work.

Our proactive press work has been popular with journalists and experts have benefited from our support to help them speak in the media.

However, demands for our time in this area now exceed the time available.

As a result the SMC will run a stakeholder event to plan a strategy for the future which will mean this work can be focussed on the areas that most need support from the mental health press officer.

Action point: the SMC will run a stakeholder event to plan strategy for future work

http://www.sciencemediacentre.org/w…arch-function-at-the-Science-Media-Centre.pdf

Review of the first three years of the mental health research function at the Science Media Centre

Science Media Centre is a registered charity (no. 1140827) and a company limited by guarantee (no. 7560997). Registered in England and Wales. Registered address: 215 Euston Road, London, NW1 2BE.

Review of the first three years of the mental health research function at the Science Media Centre February 2013

Dr Claire Bithell

Head of Mental Health

Science Media Centre

http://www.twitlonger.com/show/n_1rkle9f

Bob June 5, 2013 at 6:41 am

Esther12

Thanks for flagging that Esther.
That's all rather depressing, for a variety of reasons.
It would be worth posting it on the thread about the Hanlon article, if you don't mind:
http://forums.phoenixrising.me/index.php?threads/horrifying-article-in-sunday-times.23050/page-10
(I don't mind posting it, but I don't want to steal your thunder.)

For reference, this is the link to the SMC's PDF file:
http://www.sciencemediacentre.org/w…arch-function-at-the-Science-Media-Centre.pdf

Esther12 June 5, 2013 at 6:44 am

Help yourself Bob. I've got to admit, that it left me feeling pretty irate after I read it too.

Simon June 24, 2013 at 11:58 am

The launch of the CMRC was discussed at the Forward with ME meeting on May 14:

The Chairman said that it had been good to see so many people involved.

She was shocked to see that the Charter for the Collaborative contained a ‘gagging’ clause. There appeared to be some confusion between the desire on the part of a number of individuals to engage in honest scientific debate and the activities of a very small number of ‘activists’ which might be construed as offensive.

Members expressed various concerns about aspects of the Collaborative. The Chairman said that these could be discussed with Professor Stephen Holgate at the July meeting. They could also ask him questions about the Charter and how the researchers would be vetted. She asked members to let her know of any questions they wanted to ask

I do hope someone said something constructive about it too :)

Professor Stephen Holgate will be addressing the next Forward with ME meeting, on 2 July.

PhoenixDown June 24, 2013 at 12:54 pm

When I read the title I immediately thought of "inclusive criteria". I'm now left wondering which of the 11 (or more) sets of criteria for ME/CFS these researchers will be using. Not that I'm trying to rain on anyone's parade, it could bring great change. With hope they'll create a new objective criteria (or better still, subsets based on objective diagnosis), because lets face it, research will be quite imperfect and suffer from a monumental legacy of credibility problems until we reach this mile stone of progress.

Firestormm June 25, 2013 at 12:32 am
Simon

The launch of the CMRC was discussed at the Forward with ME meeting on May 14:

I do hope someone said something constructive about it too :)

Professor Stephen Holgate will be addressing the next Forward with ME meeting, on 2 July.

Not sure who was present at the Collaborative and also present at this Forward ME meeting, Simon. Charles and Sonja sent apologies and I think both might have been at the launch. Was Lady Mar at the launch also? I can't recall.

Stephen certainly gets about, doesn't he? Seems to be putting much effort into our condition and raising the profile. I should drop him a line again I think.

'Champion' [now do pass the ginger beer old chap] :)

Simon June 25, 2013 at 2:57 am
PhoenixDown

When I read the title I immediately thought of "inclusive criteria". I'm now left wondering which of the 11 (or more) sets of criteria for ME/CFS these researchers will be using. Not that I'm trying to rain on anyone's parade, it could bring great change. With hope they'll create a new objective criteria (or better still, subsets based on objective diagnosis), because lets face it, research will be quite imperfect and suffer from a monumental legacy of credibility problems until we reach this mile stone of progress.

At their first meeting, CMRC made subgrouping a research priority – and I agree with you that this is crucial for progress.

Bob July 23, 2013 at 11:32 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

Firestormm July 23, 2013 at 1:14 pm
Bob

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

Charities have met to discuss the information in future press releases re prevalence. This is still being progressed.

First thing I noticed. Hope they agree to go with the NICE range and not the upper ranges that hit the news every once in a while. Feeling a bit nervous now as I had thought it wasn't the charities who were at fault but certain researchers who have a tendency to like citing large numbers. Fact of the matter is that nobody still knows what the prevalence is for this condition. Maybe the ME Observatory epidemiology projects will get us there: but until then the 0.2-0.4% range seems reasonable to me at least. Better than 1-2% at any rate.

Thanks Bob. Am reading through it all now :)

Bob July 31, 2013 at 5:37 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.

Firestormm July 31, 2013 at 5:55 pm
Bob

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.

Indeed. Will finish reading tomorrow and comment more specifically then I think. Nighty night Robert :)

Bob September 17, 2013 at 10:16 am

Some information posted by Sonya Chowdhury on AfME's Facebook page:

"It is good news that the NIHR recognise the need for more funding into M.E. and as you may know, we are working with the NIHR, MRC and others, through the Research Collaborative, to raise funding for priorities that were identified by people who responded to our survey – the five priorities we put forward were the top five from the survey."

"The five priorities were disease processes (to achieve a better understanding of the underlying pathology of M.E), more effective treatments, faster and more accurate diagnosis, clinical course of M.E., outcomes and prognosis, and severely affected patients."

https://www.facebook.com/photo.php?…omment_id=10476340&offset=0&total_comments=21

So, to list AfME's research priorities:
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.,
5. outcomes and prognosis, and severely affected patients.

Items 1 & 2 seem very reasonable to me, as long as 'more effective treatments' doesn't mean continuously making fine adjustments to GET, and as long as looking into 'disease processes' doesn't pump research funds into studies looking at deconditioning and false illness beliefs.
Item 3 seems reasonable, depending on the nature of the study.
Items 4 & 5 seem reasonable as long as they aren't eating up funds that would otherwise go (for example) towards a Rituximab study.

Esther12 September 17, 2013 at 11:06 am

So 2, 3, 4 & 5 can be used by A for ME as an excuse to give money to those whose work many patients are concerned by and do not want to support.

Bob September 17, 2013 at 3:04 pm
Esther12

So 2, 3, 4 & 5 can be used by A for ME as an excuse to give money to those whose work many patients are concerned by and do not want to support.

No 1 as well, I think, if it goes towards research into deconditioning for example.

Bob January 14, 2014 at 12:14 pm

These are the minutes from the 7th October Research Collaborative meeting.
(Have we seen them yet? I think it's new.)

UK CFS/M.E. Research Collaborative Executive Board
Summary of Discussion 7th October 2013
http://www.actionforme.org.uk/Resources/Action for ME/Documents/get-informed/cmrc-notes-191213.pdf

Action for ME Tweeted it:
https://twitter.com/actionforme/status/423137208652939264

Bob February 7, 2014 at 7:59 am

Notice from Action for ME re membership of the CFS/ME Research Collaborative:
http://www.actionforme.org.uk/get-informed/news/our-news/join-the-uk-cfsme-research-collaborative

Membership is open to researchers, charities, health care professionals, students and patients etc.

For patients, the free membership basically just seems to mean being kept up-to-date with progress.

Action for ME

Join the UK CFS/M.E. Research Collaborative

07 February 2014

Would you like to join the UK CFS/M.E. Research Collaborative (CMRC)?

The CMRC aims to promote the highest quality of basic and applied evidence-based and peer-reviewed research in to CFS/M.E.

Patients and carers who want to support the work of the CRMC are invited to become Associate Members. This is free and means they will be kept up-to-date with work progress, new initiatives and outcomes of meetings.

Alternatively, professional membership (£20 per year; £15 for research students) is open to UK health professionals, researchers and charities involved in research.

Find out more about joining the CMRC.

Find out more here:
http://www.actionforme.org.uk/get-i…/joining-the-cfsme-research-collaborative.htm

To join, complete the application form at the following link (it's a Word document download):
http://www.actionforme.org.uk/Resources/Action for ME/Documents/research/cmrc-membership-form.docx

Firestormm February 7, 2014 at 8:11 am

@Bob It would seem that even as a patient I would be required to download a form, print it off, complete it, and return in the post. Seems a bit 'old fashioned' and cumbersome for the benefits I must admit. I'll try and discover more…

Leopardtail March 21, 2014 at 4:22 pm

I have to disagree with Professor Holgate very strongly here. Learning from research into 'general fatigue' is fine. But ME/CFS funding should be used exclusively for OUR illness not diverted into yet more 'related illnesses'.

The issue with the involvement of psychologists in research into ME is less the discipline and more the evil individuals who have foisted insulting pseudo-science onto us and abused funding for their own ends. It's about WHICH psychologists are involved and the standard of science.

They have abused our funding and should not be getting more of it. We must be able to trust those involved in our research. I would not trust White/Chalder not to block research on Neurotransmitters that did not fit their viewpoint.

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