Launch of inclusive UK CFS/ME Research Collaborative

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by Simon McGrath


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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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.

 

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
www.tymestrust.org

 

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.

 

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

 

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

 

"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

 

Bit more on how the CMRC will work/what it might do​

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.

 

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 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.

 

"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.

 

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"?

 

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

 

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.”

 

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.”

 

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.

 

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.

 

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...

 

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, 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.

 

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.

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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.”

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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.

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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.

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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

 

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