Thread for discussion of the research aspect of the UK DHSC interim delivery report, out for consultation until October.

[Cinders66]

Hi , I just wanted there to be a thread specifically for this important topic and a place where people can post thoughts, ideas, questions etc. I certainly have many.

A good place to start is the analyses and blog from ME research UK, who consider what is being Offered and say it falls short in many areas.
They have done a summary blog & a more in depth analysis

My full reality: the interim delivery plan on ME/CFS – Our response part 1
https://www.meresearch.org.uk/inter...Vouv_kmwHlV2fyKhYF_BXZt0jDGl02G-aRTA6RTYoUrJM

Further from @MEResearchUK a Second more in depth critique of the DHSC #mefs plan https://www.meresearch.org.uk/interim-delivery-plan-our-response-2/

The ME research UK blog includes the DHSC identified “problems“ and proposed interim solutions of 6 “rapid actions”.

On ME research UK Facebook page below post they commented that:

“ME Research UK is on the research sub-group and we vocalised the need for ringfenced funding to reflect the severity/prevalence of the disease but the meeting moved on.“

Of relevance is the fact that ME research UK have been running since 2000. They were part of research and funding “negotiations“ since the MRC ME expert group ran in 2008 and were part of the following the uk CFS/ME research collaborative until about 2018 when they left. They have also been part of Forward ME since inception and were part of the DHSC research subgroup

 

[Cinders66]

Statements on the DHSC interim delivery plan by U.K. charities


ME Research UK released a generally positive statement on August 10th.

“ME Research UK welcomes the release by the DHSC of 'My full reality – the interim delivery plan on ME/CFS'. This document has the potential to deliver concrete benefits to the lives of those affected by ME.” http://meres.uk/deliveryplan

The ME association statement August 10th.

The ME Association welcomes publication of the DHSC Interim Delivery Plan with its emphasis on:

• stimulating biomedical research,
• including education on ME/CFS for all health profesionals, and
• making improvements to the care and management of adults, children and young people with ME/CFS that are based on recommendations in the 2021 NICE Guideline.

We would like to thank everyone who has been involved in producing this interim plan and Sajid Javid MP for initiating it.

The 8-week consultation process acknowledges that there is still work to be done and this should include:

• recognising how the symptom and pathological overlaps with Long Covid can be used in research to the benefit of both groups of people.
• strengthening the section on severe and very severe ME.
• shortening the timeframe for completion for some of the key actions.

We look forward to shortly having a document that will help to improve the lives of everyone with ME/CFS – wherever they live in the UK.

We will produce a more detailed response during the period of consultation. https://meassociation.org.uk/s7wf?f...yJzv13W1TI-rLXctDWQrtQsO4nfrSHii7NwCnBqgXrLS0

Action for ME Sonya Chowdhury August 9th said:

Welcoming the publication, our CEO, Sonya Chowdhury said:

“I am delighted to see the publication of the Government’s ME/CFS Interim Delivery Plan, which outline further details on action that the Government will seek to secure change in the support and care of children and adults with ME/CFS and accelerate research. Now that the consultation phase has begun, we call on all within the M.E. community to have their voice heard and provide feedback to further strengthen the Plan.

I fully understand the complexities involved in policy development and implementation. However, we hope that the Government will expedite the implementation of the ME/CFS delivery plan post-consultation and prioritise the health and well-being of people with ME/CFS.

This is a positive step forward for people living with ME/CFS but it is only a start; much more is needed. The focus must now shift to delivery and outcomes. I look forward to continuing to work with the DHSC and other departments on the Government’s commitment to better supporting our community by delivering tangible change to ME/CFS policy across the country.” https://www.actionforme.org.uk/news/release-of-pre-consultation-delivery-plan-on-me/cfs/

 

[Cinders66]

Background & information provided by the DHSC prior to release of the draft of the delivery plan for consultation
https://forward-me.co.uk/wp-content/uploads/2022/09/MECFS-Public-Comms-FINAL-17-8-22.pdf

“The Research Working Group is responsible for looking at all aspects involved with
research into ME/CFS, including funding, applications and the challenges and problems that exist for research into ME/CFS. They will also propose actions to address these and find ways forward for research in future.” (My bolding)

“There are two co-chairs on each Working Group and the Engagement Advisory Group.
One co-chair has been invited to represent people with lived experience of ME/CFS. These nominations have been made by Action for ME, as this organisation has previously been involved in recruiting people with lived experience to join national research projects into ME/CFS. All co-chairs invited to represent people with lived experience of ME/CFS have previously been recruited through one of these processes.
The other co-chair has been invited into the role by the government because of their professional status and relevant expertise.
The Delivery Plan Task and Finish Group is chaired by a Director from the Department of Health and Social Care.”

“There are also places on the Research Working Group for other people with lived experience, including carers.”

“Other members of the Research Working Group represent organisations such as funders (e.g., the National Institute for Health and Care Research, Medical Research Council, ME Research UK), researchers and clinicians. Forward ME represents ME/CFS charities and organisations who don’t commission research“.

 

[Bronc]

Background & information provided by the DHSC prior to release of the draft of the delivery plan for consultation
https://forward-me.co.uk/wp-content/uploads/2022/09/MECFS-Public-Comms-FINAL-17-8-22.pdf

Hi , I just wanted there to be a thread specifically for this important topic and a place where people can post thoughts, ideas, questions etc. I certainly have many.

A good place to start is the analyses and blog from ME research UK, who consider what is being Offered and say it falls short in many areas.
They have done a summary blog & a more in depth analysis

My full reality: the interim delivery plan on ME/CFS – Our response part 1
https://www.meresearch.org.uk/inter...Vouv_kmwHlV2fyKhYF_BXZt0jDGl02G-aRTA6RTYoUrJM

Further from @MEResearchUK a Second more in depth critique of the DHSC #mefs plan https://www.meresearch.org.uk/interim-delivery-plan-our-response-2/

The ME research UK blog includes the DHSC identified “problems“ and proposed interim solutions of 6 “rapid actions”.

On ME research UK Facebook page below post they commented that:


Of relevance is the fact that ME research UK have been running since 2000. They were part of research and funding “negotiations“ since the MRC ME expert group ran in 2008 and were part of the following the uk CFS/ME research collaborative until about 2018 when they left. They have also been part of Forward ME since inception and were part of the DHSC research subgroup

One issue that has been ignored in this consultation and is not mentioned in the new NICE guideline is the issue of suicide. I've interviewed 2 groups of researchers into this topic who note how as an issue it is ignored even by most ME support groups/charities. During the consultation I will mention this issue in my submission.

 

[Cinders66]

Relevant background information - the decades UK long struggle for ME research, recognition, progress and accountability. Key moments:-

1998 - attempt to pass a bill in parliament to monitor ME research progress - in the pre Chronic Fatigue syndrome days.

§Mr. Jimmy Hood (MP for Clydesdale)
I beg to move, That leave be given to bring in a Bill to require an annual report to Parliament on progress made in investigating the causes, effects and treatment of myalgic encephalomyelitis.

Transcript available Myalgic Encephalomyelitis (Hansard, 23 February 1988) https://api.parliament.uk/historic-hansard/commons/1988/feb/23/myalgic-encephalomyelitis


2002 - chief medical officers report published. The working group was convened in 1998 and reported on by the BBC :-

“BBC News | HEALTH | Government to tackle ME”
http://news.bbc.co.uk/1/hi/health/133828.stm

The impact of ME was already understood:

The condition can last for years and in severe cases leave the victim bedridden.

Last year a survey indicated it was now the most common cause of long-term sickness absence from school.

The final report was covered by the BBC also :-

BBC News | HEALTH | M.E. treatment 'must improve'
http://news.bbc.co.uk/1/hi/health/1755070.stm

....Chief Medical officer, Professor Sir Liam Donaldson.......said CFS/ME should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease.

Full report available here:
A Report of the CFS/ME Working Group - Report to the Chief Medical Officer of an Independent Working Group
http://www.erythos.com/gibsonenquiry/docs/cmoreport.pdf


Discussed by Countess of Marr, Lords & a government representative in the a House of Lords here:
Chronic Fatigue Syndrome/Me - Hansard - UK Parliament
https://hansard.parliament.uk/Lords...39-8497-f2d5532e5a36/ChronicFatigueSyndromeMe

Government response regarding research, unfortunately placing all control in the hands of the MRC:

This debate raises the issue of research. It is clear from what I have said about the challenges facing clinicians that we agree with the working group that the evidence base is poor. The report states that in relation to pacing, cognitive behaviour therapy and other therapies the research base is poor. We endorse the need for more research on a wide range of aspects of CFS/ME and we have asked the MRC to develop a broad strategy for advancing biomedical and health services research on CFS/ME.

I shall not be able to give specific answers today to all the questions that noble Lords have asked me. The position is that the MRC is currently in the process of appointing an independent scientific advisory group, which will include scientists with expertise in areas such as epidemiology, physiology, immunology, infections, clinical trials and psychological medicine.

I understand the noble Countess's point about not wanting psychiatrists to dominate, but noble Lords will understand that this is a matter for the MRC and that it would be wrong for me to intervene. However, I shall ensure that a copy of Hansard is sent to the MRC in order that it may consider the points raised in this debate.

The scientific advisory group established by the MRC will draw on the working party report and other recent expert reviews. The MRC will also consult with its consumer liaison group members as to the best means by which patient and charity perspectives can be taken into account.

As to resources, the noble Lord, Lord Clement-Jones, asked me about budgets. He will be aware that it is a long-standing and important principle of successive governments that they do not prescribe to the individual research councils the detail of how they should distribute resources between competing priorities. That is a matter best decided by researchers and research users. In view of the debate that we had during the passage of the NHS reform Bill, when the criticism was expressed that the Government seek to intervene too much in organisations such as these, I am sure that the noble Lord will endorse the broad principles that I have enunciated.

& discussed by the all party parliamentary group MPs & the Labour government health secretary here:
Chronic Fatigue Syndrome (Hansard, 6 February 2002)
https://api.parliament.uk/historic-hansard/westminster-hall/2002/feb/06/chronic-fatigue-syndrome

The specific Research recommendations in the CMO report were:

6.5 Research
A programme of research on all aspects of CFS/ME is required.
Government investment in research on CFS/ME should encompass health-services
research, epidemiology, behavioural and social science, clinical research and trials,
and basic science.
In particular, research is urgently needed to:
● Elucidate the aetiology and pathogenesis of CFS/ME;
● Clarify its epidemiology and natural history;
● Characterise its spectrum and/or subgroups (including age-related subgroups);
● Assess a wide range of potential therapeutic interventions including symptom- control measures;
● Define appropriate outcome measures for clinical and research purposes; and
● Investigate the effectiveness and cost-effectiveness of different models of care.
The research programme should include a mix of commissioned or directed
research alongside sufficient resource allocation for investigator-generated studies
on the condition. (My bolding)

The general expectation was that a lot of money would go into a well-rounded research program, for which the the Medical research council were asked to devise a strategy. The problem came from the MRC having it’s own ideas (see section on MRC delivery to date).

 

[Cinders66]

In 2006 another review/inquiry, this time by MPs and Lords, lead by Dr Ian Gibson MP & known as The Gibson Enquiry, full report:
http://www.erythos.com/gibsonenquiry/docs/me_inquiry_report.pdf

The Research section said:

5.2 Research Issues
The underlying theme in all or our hearings was the paucity of research into causes. The committee welcomes the recognition of the need to sustain treatment centres. However exactly which treatments should be used on which patients remains disputed. Treatment may change after more research. Provision of resources for biomedical research is urgently needed. The committee would like to see a similar arrangement to the AIDS programme funded previously by the MRC.

The Minister indicated to the inquiry that few good biomedical research proposals had been submitted to the MRC in contrast to those for psychosocial research. We have however been told of proposals that have been rejected, with claims of bias against support for this type of research. The MRC should do more to encourage applications for funding into biomedical models of CFS/ME.

The CMO’s Working Group report came out in January 2002. Despite paying lip service to the need to advance the understanding of CFS/ME, the MRC itself has confirmed that from April 2003 to date, it has turned down 10 biomedical applications relating to CFS/ME because they considered they were not of high enough scientific standards to compete against the many calls on its funds. These included applications under the headings of pathophysiology, genetics, biomarkers, immunology and neuroimaging.

By contrast, since April 2003 the MRC has funded five applications relating to CFS/ME, mostly in the psychiatric/psychosocial domain (Professor Francis Creed, Professor K Bhui, Professor Peter White’s PACE trial, Alison Wearden’s FINE trial and Richard Morriss’ study of “medically unexplained symptoms”). These are to be welcomed of course since they are largely concerned with efforts to confirm or refute the nature of different forms of therapy in carefully controlled trials. However it is important for the MRC to be seen to be balancing this with support for more high quality basic research into potential causes.
Biomedical applications in respect of CFS/ME known to have been rejected include those by Professor Jill Belch (herself a Principal Fellow of the MRC) and Dr Vance Spence of Dundee, as well as Dr Jonathan Kerr of St Georges, London.
It is clear that internationally there have been a number of studies, which have identified clear areas for further research. The MRC should commissions British versions of this research in order to advance possible treatments.

The group were concerned by the MRC CFS/ME Research Advisory Group paper. The Research Advisory Group advocates concentrating research effort on case management and “potential interventions” rather than cause, pathogenesis or means of confirming the diagnosis saying this approach is as appropriate for CFS/ME “as it is in other illnesses” of unknown cause. The Group is concerned that this diverted attention away from the need for more research into causation and diagnosis. The Group feels that CFS/ME cannot be viewed in the same light as other illnesses of unknown cause such as the malignant diseases which can be diagnosed with appropriate existing investigations. The crucial issue with CFS/ME is to identify diagnostic tests for it even before its cause is clarified. Of course you can research the effects of treatment of a proven specific cancer without knowing its cause. The same does not apply to an illness where the diagnosis has not been positively confirmed.

In the general conclusion the report said:

There are arguments relating to whether ME and CFS are separate illnesses. Opinion on this matter is split, both within the Group and in wider society. The only way to resolve this dispute is through a massive further research programme involving large patient groups.

The Group recognises that fatigue may have many causes, indeed chronic fatigue may also be symptom of other illnesses. As such, it may react well to psychological treatments. However, severe cases of CFS/ME do not respond so well to psychological treatment and this must be investigated further.
ME and CFS have been defined as neurological illnesses by the World Health Organisation. Various clinical and epidemiological research studies in countries around the world have suggested CFS/ME to have a biomedical cause. The UK has not been a major player in the global progress of biomedical research into CFS/ME. Although some interesting biomedical research has been done in the UK precedence has been given to psychological research and definitions. The Group believes the UK should take this opportunity to lead the way in encouraging biomedical research into potential causes of CFS/ME.
There is a great deal of frustration amongst the CFS/ME community that the progress made in the late 1980s and early 1990s toward regarding CFS/ME as a physical illness has been marginalised by the psychological school of thought. It is clear the CFS/ME community is extremely hostile to the psychiatrists involved.
The Group does not intend to criticise the motivations or actions of any one group, our aim is to build consensus from this point forward. Indeed the Group wishes to avoid being distracted by debates centring on semantics in this difficult and contentious field. The principle actuality remains, that there exists a serious disease, which causes much suffering for patients, which may be severe and incapacitating and which causes a multitude of symptoms. This is the baseline from which all else should follow.

Their section on hearings found a general call for more funding including a surprising quote from Professor Peter White:

The overwhelming message from all of our speakers was that more money was needed to develop knowledge in this contentious area. There are innumerable potential causes and unusual symptoms found in CFS/ME patients, but in the UK at least, sufficient research has not been done to verify any one cause. The Group feels the necessary research must be funded immediately. Prof Peter White told us ‘ring fence some money and the scientists will follow’. Below we will summarise the areas these presentations identified for further research.

Their recommendations, which as ME research UK said, none of which were implemented

7.2 Areas for Further Examination
1. Is this one disease or two – CFS/ME or CFS and authentic ME? Is there a clear distinction or is it a spectrum? Large-scale epidemiological studies of large populations of patients will help delineate subsets of patients.
2. Why does the DOH not keep or collect data pertaining to the number of CFS/ME sufferers in the UK? The NICE guideline says “there is a lack of epidemiological data in the UK which means that population estimates are based on extrapolations from other countries”
3. No representative who appeared at the Oral Hearings proposed CFS/ME was entirely psychosocial. So why has this model taken such a prominent role in the UK?
4. The Research areas defined by the CMO Report in 2002 have not been addressed. Further research is the single most important area in this field.
5. There is a need for diagnostic tests but this is likely to be dependent on a greater understanding of possible causes.
6. There is a need to undertake further research of post viral infective cause in carefully controlled studies.
7. The evidence for a toxin aetiology requires critical and controlled studies. This includes research into possible causes, like pesticides.
8. There is a great deal of anecdotal evidence of a variety of causative agents. If such causes are to be convincing the possibility of simple coincidence has to be rigorously excluded by careful research.
9. Much more study should be centred on the reasons why some individuals are susceptible to developing the illness or illnesses. These include further follow-up of immunological, endocrinological and neurological disturbances.
10.Research into further treatments is required but, in the absence of a known cause or causes which could be addressed with specific therapy, all current treatments are symptomatic and aimed at helping patients cope with their illness.
11. Although a number of controlled clinical trials were presented to us, there is a great need for large scale trials. Any new treatments will also require independent assessment in a controlled environment.
12.The MRC should call for research into this field recognising the need for a wide ranging profile of research. The committee would like to see a similar arrangement to the AIDS programme funded previously by the MRC.
13. An independent scientific committee must examine the wealth of international research data. To exclude it from the debate is a great injustice to patients.
We recommend that this condition be recognised as one which requires an approach as important as heart disease or cancer. There is no compelling evidence it is a purely psychosocial. Where the disease or diseases fit in the spectrum of psycho or biomedical disturbances in any individual requires much further research. However, this will depend on well-funded research that must be made a priority in our health research programme.
Despite the findings of the CMO’s Report some three years ago. There has been no massive investment in funding of research into ME. Instead, we have seen a review of treatment by NICE based on existing evidence and existing symptomatic
techniques. We must research to find alternatives.

7.3 The Immediate Future
This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions, they should assign at least an equivalent amount of funding (£11 million) to biomedical research as they have done to psychosocial research. It can no longer be left in a state of flux and these patients or potential patients should expect a resolution of the problems with only an intense research programme can help resolve. It is an illness whose time has certainly come.

 

[BrightCandle]

In 2006 another review/inquiry, this time by MPs and Lords, lead by Dr Ian Gibson MP & known as The Gibson Enquiry, full report:
http://www.erythos.com/gibsonenquiry/docs/cmoreport.pdf

If that was what they wrote today no ME patients would notice the difference. Nothing has changed in 2 decades. None of their recommendations were implemented, not one.

 

[Cinders66]

If that was what they wrote today no ME patients would notice the difference. Nothing has changed in 2 decades. None of their recommendations were implemented, not one.

Quite and that’s a) a scandal b) all the more reason why this effort not only has to be significant and meaningful but grand enough to make up for the obscene waste of time/opportunities/lives, rather than scratching about getting started.

 

[Cinders66]

The MRC response to ME, since the publication of 2002 chief medical officers report.

The Medical research council 2003 CFS/ME strategy, requested by the chief medical officers report, was Published. It is a lengthy document:

https://webarchive.nationalarchives...i.org/documents/pdf/cfe-me-research-strategy/

There were highly problematic assumptions in the MRC strategy summary which the Gibson report referred to:

In the short term, the MRC CFS/ME Research Advisory Group considers that the research community should be encouraged to develop high quality research proposals for funding that address key issues for CFS/ME research that are amenable for study at the present time: case-definition, understanding symptomatology, and new approaches to management.

In view of the probable multiplicity of potential causal factors and the widely disparate findings so far reported, the MRC CFS/ME Research Advisory Group considers that studies investigating causal pathways and mechanisms, whilst having merit, would not have the same immediate impact on increasing understanding of CFS/ME, nor reducing the suffering of patients. This is not say that such studies should be abandoned, rather that it is not an essential prerequisite to identify triggers and causal pathways in order to undertake research on CFS/ME.

The MRC CFS/ME Research Advisory Group considers it is appropriate to explore potential interventions for CFS/ME in the absence of knowledge of causation or pathogenesis, as it is in other illnesses. Randomised controlled trials of adequate size, using standardised case definitions, eligibility criteria, and baseline and outcome assessments, could be used to evaluate one or more of the interventions which have been shown in one or more trials to have a benefit. Standardisation will allow results to be more widely generalised and compared between studies.

In 2006 Action for ME and the Medical research council held a joint research conference

 

[Cinders66]

From 2006-2012 there was a conference, an MRC collaboration group set up and meetings & workshops. The main focus was on how to encourage research and what research priorities should be. The below summaries are copied directly from the archive of past activities link below,
Notes from group meetings & the 2009 workshop are available on the link too.
The type of activity is very familiar and the DHSC plan is proposing to arguably repeat much of this

https://webarchive.nationalarchives...our-science-and-contacts-psmb/mrcfs/#workshop

Joint Action for ME (AfME) and MRC research summit

In November 2006, Action for ME (AfME) and the MRC held a joint research summit with the aim of stimulating further research into ME/CFS. A report of the research summit (PDF) has been published.

MRC CFS/ME Expert Group (2008-2010)

The MRC ME/CFS Expert Group brought together leading experts in the field of ME/CFS and from associated fields that may be involved in the underlying mechanisms of ME/CFS, in addition to representatives from the charity sector. The Group was chaired by Professor Sir Stephen Holgate.

The aim of the group was to explore ways in which to encourage new research in the ME/CFS field. The group looked at new technologies and associated areas of research that could help inform the diverse range of symptoms and possible underlying causes of ME/CFS.

Members of the group were involved in various activities in the field, including the 2009 MRC ME/CFS Research Workshop and Prioritisation Meeting (below), informing the strategy for the 2011 MRC ME/CFS call for proposals and establishment of the 2012 MRC ME/CFS highlight notice. Several members of the Group subsequently became members of the UK CFS/ME Research Collaborative (UK CMRC), which was established in 2013.
..........

The 2009 workshop was similar to the CMRC conferences but without an audience. There were numerous presentations and then working subgroups. The MRC summarise It As follows but there were over 40 pages to the write up:

The workshop in 2009 identified an extensive list of research areas that were in need of investigation. Subsequently, we set up a prioritisation group, comprising members of the Expert Group and other workshop attendees, to discuss and prioritise the research topics raised according to short, medium and long-term goals.

This extract below illustrates familiar themes - the charities talking about the need for a tissue bank & Stephen Holgate the need to build up of research capacity and infrastructure and how off key others were, talking of mental health, fatigue and general tiredness. There was no mention of severe ME or post exertional malaise at all.

During the group discussion Sir Peter Spencer and Dr Charles Shepherd outlined a feasibility study for setting up CFS/ME post mortem and in vivo tissue banks which was being funded jointly by Action for ME and the ME Association. Sir Peter emphasised that the charities in this area were very small compared to other disease-related charities and therefore obtaining funding for large studies was challenging.
2.11 Attendees highlighted that there were potentially many opportunities that could open up research into CFS/ME. For example, little was known about fatigue mechanisms and investigating fatigue in healthy individuals could provide useful clues in understanding the aetiology of CFS/ME.
Since anxiety and depression comprised a large part of the symptoms of CFS/ME alongside other symptoms such as pain, the interaction between biological and psychological mechanisms should be explored, particularly as there was scope to investigate anxiety from the perspective of autonomic nervous dysfunction.
Another cross-cutting area that could prove fruitful to explore was that of mitochondrial function and energy metabolism.
2.12 In summing up the day’s discussions, Professor Holgate noted the many potential interesting avenues for research. Going forward, the right infrastructure needed to be in place, aided by the adoption of a collaborative approach.

Like with the DSHC working group, discussions were given over to subgroups for topic discussions and priority setting.
It may be surprising to see some of the priorities, given that only the GWAS ambition has been realised.

The U.K. strengths group wanted:

To identify possible ‘early win’ interventions for phase 2 and early phase 3 clinical trials - e.g. targeted use of cytokines; melatonin for those with sleep problems.

- the partnership group identified priorities including:

*The establishment of tissue banks with samples from well
characterised patients and controls.......
*Virology and infection triggers – there was potential for virology to be studied in CFS/ME as part of the complex disease pathogenesis.

& The new technologies and technological platforms group identified priorities including:

• Imaging technologies such as fMRI, EEG and MRS and pathological studies using tissue could be utilised for neuroanatomical studies and neurophysiological studies of fatigue.

Apparently, in the plenary session it was agreed that:

“ CFS/ME was a complex disease that comprised the interaction of different biological, physical and psychological mechanisms.”

 

[Cinders66]

The Medical Research Council ME/CFS funding call of 2012

In 2011, the MRC ME expert group finally published its 6 identified priorities and put out a funding call with set-aside funding.

Identified priorities were quite broad based or vague, depending on perspective:

1. Autonomic dysfunction
2. Cognitive symptoms
3. Fatigue
4. Immune dysregulation (eg through viral infection)
5. Pain
6. Sleep disorders

more information here:
https://meassociation.org.uk/2011/0...urther-details-on-research-funding-for-mecfs/

Additionally, the call encouraged capacity building in ME/CFS research and the entry of new researchers into the field.

The funding call attracted applications and five were selected, with funds totalling £1.6m. They are available to view, along with all MRC grants from 2002 onwards, here:
https://webarchive.nationalarchives...fsme-research-projects-from-200405-to-201617/

One was a Trial of the sleep drug “xyrem“ that never published
One was a fatigue study that included research on a Sjögren’s cohort
And three were biomedical ME/CFS studies looking at mitochondria, the immune and autonomic nervous system

further details from the ME Association here:

https://meassociation.org.uk/2012/0...jects-medical-research-council-12-april-2012/

 

[Cinders66]

Controversy and criticisms Of the Medical research council strategy/ activity pre 2013



The five studies that received ring-fenced funding 2012
The fatigue study was actually primarily on a sjogrens cohort, which was presented to patients as still very worthy but the controversy was somewhat discussed at an APPG meeting 2013 here:

“Dr Charles Shepherd said that a discussion on the M.E. Association’s Facebook page has generated a lots of support for a study of patients with Sjögren’s syndrome, but that there were concerns is that the study restricts itself to Sjögren’s patients, even though there is also a service for people with M.E. in the unit in Glasgow where the study would take place. It would be helpful if the Expert Group could meet again to look at these proposals.
Professor Savill explained that the detail of the information on the MRC website is lacking. The study into patients with Sjögren’s syndrome actually also involve CFS patients.“