February 21, 2024

expert reaction to study of deep phenotyping of patients with post-infectious ME/CFS

A study published in Nature Communications looks at phenotyping of patients with post-infectious ME/CFS.

Prof Karl Morten, Principle Investigator, Nuffield Department of Women’s & Reproductive Health (NDWRH), John Radcliffe Hospital, University of Oxford, said:

“This is such an important paper and one I am so pleased to see come out. With our meagre research budgets we can only dream of running a study like this.

“The brain appears to be potentially driving the patient response. The big question is why? Is something still going on we are not yet aware of? The immune system is dysregulated and appears to still be showing an antigen response. Is this suggesting a foreign entity is still present or has the system gone rogue? The differences in many of the symptoms appear linked to male/female differences. This is important as we have perhaps got bogged down trying to understand the vast number of different and changing symptoms for too long.

“Can we now start to hone in on what is really important? I am very excited about next steps and the major funders now need to step up and provide sustainable global funding for ME/CFS research”

Prof Chris Ponting, Chair of Medical Bioinformatics, University of Edinburgh, said:

“This long-awaited publication describes results from an exploratory study of 17 people with post-infection ME/CFS who match by age, sex and body mass index with and 21 healthy volunteers. The NIH investigators undertook deep phenotyping of their cells and molecules, and the autonomic, cardiorespiratory and central nervous systems. The long-awaited results show that people with post-infectious ME/CFS have different amounts of molecules in cerebrospinal fluid, muscle and blood, and immune cells in blood, relative to healthy control individuals. As they acknowledge, the data is useful to investigate correlations, but is unable to highlight causes of ME/CFS, and will be helpful to reprioritise future, more mechanistic, experiments. These should involve more than the 17 cases participating in this study, and should include people with ME/CFS without an infection prior to onset, and people who have been diagnosed for more than 5 years, the maximum for this study.”

Dr Katharine Seton, Research Scientist, Quadram Institute Bioscience, said:

“This comprehensive study on a well-defined subgroup of ME/CFS patients serves as a prime example of the research required to deepen our limited understanding of this complex disease and ultimately identify treatments. Historically, studies investigating ME/CFS have often focussed on singular aspects of the disease, largely due to inadequate funding for this disease. These fragmented studies merely offer isolated pieces of a larger jigsaw puzzle. However, the current paper stands out with its extensive author list, featuring experts from diverse disciplines collaborating to assemble these pieces and reveal a more complete picture. This interdisciplinary approach is crucial for advancing our understanding of this disease.”

‘Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome’ by Brian Walitt et al. was published in Nature Communications at 10:00 UK time on Wednesday 21^st February.

DOI: 10.1038/s41467-024-45107-3

Declared interests

Prof Karl Morten: No declarations of interest

Prof Chris Ponting: Investigator on the DecodeME study, funded by NIHR and MRC. Funded by ME Research UK and Action for M.E. in the last 5 years.

Dr Katharine Seton: Dr Katharine Seton has received research grants from the US charity Solve ME/CFS Initiative and the UK charity Invest in ME Research.