Medscape UK has provided a useful lay overview of research into ME/CFS and the article provides a structure which shows the important role of ME Research UK in all highlighted ME/CFS research areas.
The article focussed on a number of key research issues – with ME Research UK heavily involved in all.
Viral Reactivation – in which ME Research UK’s Research Director is quoted.
Viral infection is commonly reported as a trigger for [ME/CFS, meaning that the disease] may be caused by reactivation of latent viruses, including human herpes viruses and enteroviruses,”
On this, research building on a 2021 study (undertaken by previously funded ME Research UK researchers – Luis Nacul and Eliana Lacerda) looking at human herpesviruses was honed in upon. This showed that those affected by ME/CFS have a higher concentration of human herpesvirus 6B (HHV-6B) DNA in their saliva, and that concentration correlates with symptom severity. The NIH is currently funding a team at Brunel University , including Eliana Lacerda, looking at the reactivation of herpesviruses in ME/CFS.
ME Research UK currently funds Dr Prusty‘s study on “Infectious triggers and mitochondrial dysfunction in ME/CFS” and Dr Amy Proal‘s “Identifying viruses in tissue and nerve samples from ME/CFS patients”.
Mitochondrial Dysfunction
Drawing upon comments from Dr Charles Shepherd (Trustee of the ME Association) on evidence that biochemical abnormalities in ME/CFS affect how mitochondria produce energy after physical exertion.
A possible treatment was therefore to see if treating mitochondrial dysfunction would aid those with ME/CFS and, indeed, a 2023 study found that AXA1125 aided energy metabolism and led to fatigue-symptom inpovement in people with Long-COVID. Plans for a phase III trial have stalled due to insufficient funding.
Apart from overlap with Dr Prusty’s work, an ME Research UK PhD-level project is looking at the links between mitochondrial function and the autonomic nervous system in ME/CFS and another at the cause-effect relationships in the mitochondrial energy inefficiency in ME/CFS Our past projects also looked at AMPK activation and the use of glucose for energy production in muscle cells from patients with ME/CFS.
Gut Dysbiosis
The role of the gut in ME/CFS has been oft discussed – whether it be regarding more reported gastrointestinal symptoms amongst those with ME/CFS, or key theories related to the involvement of the gut in the development of the disease. Many studies have found that people with ME/CFS have altered gut microbiota hence the work of the Quadram Institue on faecal microbiota transplants. ME Research UK currently funds Dr Simon Carding looking at ‘Do gut viruses have a role in the development of ME/CFS?’
Biobank and Biomarkers
As one of the founding financial backers of the UK ME/CFS Biobank (along with Action for ME, the ME Association Ramsay Research Fund, and a private donor) it was heartening that Medscape UK narrated the positive impact of the Biobank’s work and especially so when referencing ME Research UK and the ME Association Ramsay Research Fund’s co-funded project at the University of Surrey. Drs Dorey and Labeed are developing a diagnostic test for ME/CFS using the electrical properties of blood from people with ME/CFS compared with healthy and multiple sclerosis (MS) controls (with samples from the UK ME/CFS Biobank).
Genetic Test
Utilising data from DecodeME, the world largest dna ME/CFS study, Professor Chris Ponting’s work was highlighted. Initial findings from the questionnaire have been published and others are undergoing peer-review. ME Research UK funds a PhD-Level project at his Institute of Genetics and Cancer, Edinburgh University with Gemma Samms looking to identify which dysfunctional genes highlighted by DecodeME are most likely to contribute to the risk of ME/CFS, and to assess their impact on cell function.
The future
Sonya Chowdhury, chief executive of Action for ME pointed out that in “10 years, only £8.05m has been spent on ME research” and that this amount is not equitable comparable to research funding allocated to other diseases.
ME Research UK alone in the past few years has funded over £2m of ME research globally. Further, we have stated, as part of our response to the ME/CFS Delivery Plan process and that “biomedical ME/CFS research has been an egregiously neglected and underrepresented area” and funding must be ringfenced and reflect both the prevalence and severity of the disease.
As an organisation, we are committed to building a brighter research future in ME/CFS – step by step.
