Professor Jonathan Edwards, along with several ME/CFS patients and a carer with scientific backgrounds have co-authored a peer-reviewed editorial on the disease that appears in the latest issue of the journal Fatigue: Biomedicine, Health & Behavior.
The article is titled, The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem. The paper has gained over 1600 views in the three days since publication, making it already Fatigue’s second most-read paper since the journal began in 2013.
The paper is an overview of the most promising developments in biomedical research into ME/CFS. The authors “call on the wider biomedical research community to actively target this condition” and make a “concerted effort.”
Simon McGrath, an ME/CFS patient well-known for his blogs on the science of the illness, was one of the editorial’s authors. He said, “We felt it was time to make the case for biomedical research, aiming to summarise the most promising research, while acknowledging its limitations”.
He added, “The aim of the paper is to provide a ‘way in’ to biological ME/CFS research for researchers who might be interested but were overwhelmed by the vast literature of mainly unconfirmed findings, or those who doubted there was anything of merit in biological research.”
The paper includes what he described as “the most interesting studies, including the two-day exercise challenge, changes in gene expression after moderate exercise, and brain scans indicating microglia activation”. The editorial also highlights the promising rituximab treatment pilot studies and ongoing trial.
He added that the article “sets out some possible general models, and proposes some important practicalities including better infrastructure/cohorts, stress-testing, replication, and exploring immunological, autonomic and CNS factors.”
The team used a private subforum on the online ME/CFS forum Phoenix Rising to collaborate on the work. McGrath thanked Phoenix Rising and its organisers, and said, “We live in three different countries and have still never met, but it shows what can be accomplished when patients are given the tools… for discussion”.
He added that the project had been possible because a researcher had been “willing to judge patients by what they can contribute, not who they are… a lot of researchers would not dream of doing so”.
Emeritus Professor Edwards of University College London is well known in the ME/CFS community for his work supporting B-cell research and the effort to have a rituximab trial in the UK. He proposed in 1999 that self-perpetuating B lymphocytes drive human autoimmune disease and his 2004 studies of rituximab for rheumatoid arthritis, published in the New England Journal of Medicine, confirmed the concept.
Welcome to June’s #FacetsOfME! Facets of ME is an educational feature where we dive into a particular aspect (or facet) of ME and explore it more in depth. This month we are focusing on temperature dysregulation- heat and cold intolerance. It is surprising how difficult this symptom can be to manage until you experience it.