Current Research Projects – long-term ongoing initiatives:
1) The UK ME/CFS Biobank
The UK ME/CFS Biobank was launched in 2011. It is led and managed by the well-established CURE-ME research team at the London School of Hygiene and Tropical Medicine.
From the very beginning, the ME Association Ramsay Research Fund has provided significant finance for this charity-backed project and because we see real value in this initiative, from 2015 we will continue to support it as a major investor.
2) Post mortem Tissue Sampling and The UK ME/CFS Post mortem Tissue Bank
The ME Association is the only ME charity involved in the collection of post mortem tissue samples from people diagnosed with ME/CFS in the UK and our aim is to establish a national ME/CFS Post mortem Tissue Bank where greater numbers of samples can be collected and stored for vital research.
If you would like to donate post mortem tissue for ME/CFS research then you need to make this clear by completing a Statement of Intent which can be kept with your Will or in a Codicil to your Will. Your next of kin will also need to know about this instruction and where they can locate it.
3) The ME/CFS Disease Register – Position Statement August 2016
Action for M.E., the ME Association and ME Research UK are jointly releasing this statement to update our supporters on the ME/CFS Disease Register project, which has now come to an end. The maintenance and regular update of all the information held in the Disease Register is no longer a priority for the limited research funds available to us, and we explain why this is below.
The ME/CFS Disease Register project was begun in an effort to develop a population-based disease register for the illness. Led by Prof Derek Pheby, it was housed initially alongside the ME/CFS biobank at the London School of Hygiene and Tropical Medicine, and was one of six sub-projects funded by the Big Lottery Fund as part of the National ME/CFS Observatory project.
4) UK Clinical Trial of Rituximab
The ME Association believes that the drug Rituximab represents the most important development so far in terms of a potential disease altering treatment for at least a sub-group of people with ME/CFS.
Applications for funding from any high quality research group in the UK who wants to carry out a clinical trial would be especially welcome, and the ME Association are also willing to help fund a multicentre international trial – provided it has a UK arm.
The MEA Ramsay Research Fund has currently set aside over £60,000 for a viable UK trial and these funds will remain separate from other research funds until such time as a trial is deemed feasible.
Current Research Studies – funded initiatives currently underway:
Exclusive Research from Ramsay Research Fund
1) Examing Mitochondria in ME/CFS
Lead researcher: Dr Karl Morten
RRF investment = £100,000
2) Examination of MicroRNA profiles in PBMCs and exosome-enriched vesicles
Lead researcher: Professor Elisa Oltra
RRF investment = £50,000
3) Effect of Exercise on Cognitive and Immune System Function
Lead researchers: Dr Amolak Bansal and Dr Megan Arroll
RRF investment = £32,000
4) Sleep Disturbance and Management
Lead researchers: Professor Jason Ellis and Professor Julia Newton
RRF investment = £15,000
5) Comparison of results from a commercial and NHS blood test to assess mitochondrial function
Lead researcher: Dr Sarah Jayne Boulton
RRF investment = £21,305
Collaborative Research and Donations:
6) Abnormalities in Mitochondrial Function in Skeletal Muscle
Lead researcher: Professor Anne McArdle
This research is being jointly funded with the Medical Research Council
RRF investment = £30,000
7) Immune System Dysfunction
Lead researchers: Professor Stephen Todryk and Professor Julia Newton
This research is being jointly funded with Action for M.E.
RRF investment = £19,500
PACE Trial Data
March 2017 – PACE Trial Critique
The ME Association has paid – from general funds – for a PACE Trial critique from ME/CFS patient advocates to be made open-access. The commentary and preliminary reanalysis was authored by Carolyn Wilshire, Alem Matthees, Tom Kindlon and Simon McGrath and published in the journal ‘Fatigue’.
This has brought greater international attention to this important paper and helped many people, including patients, to read it for free and better appreciate the reasons why the Trial is considered by many – including the ME Association – to be unsound.
The authors conclude:
“The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.”
A background article from the ME Association can be read, here.
March 2017 – PACE Trial Commentaries
In a further development, the Journal of Health Psychology, had published a PACE Trial critique from Dr Keith Geraghty in November 2016 and then kindly agreed to feature additional commentaries from other notables including Dr Charles Shepherd, Dr Leonard Jason, Dr Jonathan Edwards, the UK ME/CFS Biobank team, and others to highlight the growing discontent.
When it became clear that these important commentaries would be published behind a paywall, the ME Association quickly wrote to the Journal explaining the importance of open-access and were very pleased when the Journal agreed to make them open access increasing audience reach.
‘Patient Evidence’ Research
The following research was funded by ME Association general funds with data gathered from patients in the form of online and paper-based surveys that had been offered to both members of the ME Association and to non-members.
October 2015 – Patient Survey Report – CBT, GET, and Pacing – ‘No decision about me, without me.’
Results and In-depth analysis of the 2012 ME Association extensive patient survey examining the acceptability, efficacy and safety of cognitive behaviour therapy, graded exercise therapy and pacing courses as Interventions used as management strategies for ME/CFS.
The report demonstrated patient experiences of therapies prescribed by the National Institute of Care Excellence (and endorsed by the PACE Trial), and has been used in the ME Association submissions to NICE and widely cited by many authors critiquing the PACE Trial.
You can download the 278-page report, here.
May 2010 – Patient Survey Report – Illness Management – ‘Managing my M.E.’
Results and in-depth analysis of the 2008 survey into illness management. Overall, 4,217 people took part – making this the largest ever survey of patient and carer evidence. A total of 3,494 people took part using the on-line version. Another 723 completed the paper version.
The aim of the survey was to gather a wide range of patient and carer evidence including opinions relating to prescribed medications and illness management therapies. The survey also asked people what sort of services they wanted, which health professionals they wanted to see involved in their care, and where they wanted referral services to operate from. There was a separate section that enabled carers to share their experiences and describe what services they felt were needed.
You can download the 32-page report, here.