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2022 – Influencing the Research Agenda

Although investing in ME research is vital to ME Research UK, it also provides us with a unique perspective on wider issues in ME research, and in helping to influence wider ME research initiatives.

The momentum gained by the October 2021 introduction of NICE’s updated guideline ‘Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management’ (NG206) has continued in 2022. Implementation issues remain a concern, but the shift in attitudes (especially to the lack of evidence to sustain Graded Exercise Therapy and Cognitive Behavioural Therapy as ‘treatments’), has helped spark new thinking about the illness, not least in Scotland where the Scottish Good Practice Statement awaits updating to reflect the changes within the 2021 NICE guideline.

ME Research UK has been part of the ME/CFS Stakeholder Group meetings under the auspices of the Clinical Priorities Unit of the Scottish Government’s Healthcare and Quality Improvement Directorate, discussing NICE 2021 implementation in Scotland as well as tracking undertakings given by the Scottish Government during the Scottish Parliament’s Petitions Process to transform ME treatment, education and research in Scotland.

Both NICE and a Scottish Review recommended increased research activity. Perhaps the most important policy intervention was on International ME Awareness Day 2022 with the statement on behalf of the then Secretary of State for Health and Social Care, the Rt Hon. Sajid Javid, which reported that

The Chief Scientific Adviser has asked the UK Clinical Research Collaboration to convene a subgroup on ME/CFS to work with funders, researchers, charities, and people with ME/CFS to drive high-quality applications for research into ME/CFS and support the research community to build capacity and capability in this field. We are committed to funding research into this important area.

Statement by Lord Kammall.

As a funder of, and in contact with, many major researchers globally, ME Research UK was invited to help shape the outcome of the process. ME Research UK has been actively involved in both the roundtable event on 9th June 2022 and the work regarding publication of a Delivery Plan for ME/CFS.

The charity is represented on both the UK Clinical Research Collaboration’s ME/CFS Research Working Group – which 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 – and on the important ‘Building capacity and capability in the research community’ sub-committee which brings together funders, such as the NIHR, and researchers.

Also, ME Research UK attends and contributes to the Forward-ME Group meetings. Forward-ME members work collaboratively to improve recognition and understanding of ME/CFS. The focus of the Group is the urgent need for biomedical research, effective diagnosis and appropriate symptom management, and appropriate care and support services for ME/CFS. ME Research UK’s Chair sits on the Steering Group.

Through our membership, ME Research UK influences the group’s contributions to other areas of the Secretary of State for Health and Social Care’s initiative – namely the overarching ME/CFS Delivery Plan Task and Finish Group and the Working Group sub-committees on Attitudes and Education, and Living with ME/CFS.  

Forward-ME is also a partner in DecodeME the world’s largest ME/CFS study which seeks, through the recruitment of 25,000 people with ME, to see whether the disease is partly genetic and, if so, help pinpoint what its causes are. The study should help researchers understand the disease and ultimately find treatments. One of ME Research UK’s PhD-level research awards centres on genetic risk factors, and is supervised by Prof. Chris Ponting at the MRC Human Genetics Unit, University of Edinburgh. Prof. Ponting’s main area of research is genomics and he is the principal investigator of DecodeME.

ME Research UK attends and plays an active part in Steering Group meetings of the UK ME/CFS Biobank hosted by the London School of Hygiene and Tropical Medicine. ME Research UK was a financial supporter of the biobank in its formative stages (investing a total of £76,542). The charity notes that samples for the biobank have been utilised by Prof. Khan and Dr Westermeier as part of their ME Research UK-funded projects.

Through our research calls we are also able to highlight areas of particular interest, such as our Viruses and ME call. Viruses that have been implicated as potential triggers of ME/CFS include human herpesviruses (such as Epstein–Barr virus which causes glandular fever), but, with the advent of long COVID, the interplay between viruses, bodily systems and long-term illness is even more important to understand. These are areas of increased international interest and the results of ME Research UK-funded research will be eagerly awaited.

Of course, the greatest influence ME Research UK can have is via the results our funded studies.

This year, findings from research funded by us included the following:

  • Exposing endothelial cells to blood from ME/CFS patients reduced their production of nitric oxide. This may underlie the endothelial dysfunction that affects some people with the disease.
  • Antibody responses to two Epstein-Barr virus-related antigens were higher than normal in ME/CFS patients who reported an infectious onset to their illness.
  • Epigenetic alterations to the COMT gene were found more frequently in patients with ME/CFS and fibromyalgia than in healthy controls, suggesting this may be an important factor in the development of these illnesses.
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