United Kingdom: ME Research UK (MERUK) News

Heterogeneity in ME/CFS

Last week, in a posting on X, the Simmaron Research Centre, USA (whose institute works to advance translational science in treating neuroimmune diseases) have highlighted that "one of the biggest challenges in ME/CFS research has been patient heterogeneity". This research group is behind a...
www.meresearch.org.uk www.meresearch.org.uk
800-word article.

Heterogeneity in ME/CFS​


Conclusion​

ME/CFS research is complicated because the diagnosis brings together people who share core features but may differ in factors such as disease severity, symptom patterns, triggers, co-existing conditions and underlying biology.​
Combining all those with the disease together and assuming they are identical can blur research findings.​
Treating heterogeneity with curiosity may help researchers identify subgroups, discover more reliable biomarkers, and eventually develop treatments that are better matched to individuals with ME/CFS.​

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Chandelier said:

Heterogeneity in ME/CFS

Last week, in a posting on X, the Simmaron Research Centre, USA (whose institute works to advance translational science in treating neuroimmune diseases) have highlighted that "one of the biggest challenges in ME/CFS research has been patient heterogeneity". This research group is behind a...
www.meresearch.org.uk www.meresearch.org.uk
800-word article.

Heterogeneity in ME/CFS​


Conclusion​

ME/CFS research is complicated because the diagnosis brings together people who share core features but may differ in factors such as disease severity, symptom patterns, triggers, co-existing conditions and underlying biology.​
Combining all those with the disease together and assuming they are identical can blur research findings.​
Treating heterogeneity with curiosity may help researchers identify subgroups, discover more reliable biomarkers, and eventually develop treatments that are better matched to individuals with ME/CFS.​

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I am so skeptical of the idea that an illness with such a profoundly unique core feature as PEM could actually turn out to be 10+ different diseases with completely different pathology.

Maybe there are some subgroups, maybe not, maybe its different overlapping loops as @hotblack often suggests. Obviously there will be people who don't fit into any future diagnostic category, or don't respond to some future treatments.

But it's always places like Simmaron who are selling treatments without the trial results to back them up that talk the loudest about heterogeneity.

I think ME Research UK shouldn't have put this article out without providing the opposing perspective. It makes it look like all researchers think this is a deeply heterogeneous disease and I'm not sure that's true.
 
ME Research UK:

The sheer devastation of cognitive dysfunction in ME/CFS is very apparent from the overwhelming number of responses to our recent Symptom Saturday survey. This symptom can rip through careers, hobbies, and relationships. We are deeply grateful for the insights shared; and whilst it is not possible to feature every response in a single article, all accounts are vital. They help inform future biomedical publications, convey the realities of ME/CFS to researchers, supporters, and the public, and guide internal organisational education.

We have drawn together some of the common themes related to the experience of cognitive dysfunction: https://tinyurl.com/brainfogimpactME
 
ME Research UK is doing a sleep dysfunction survey:

Sleep dysfunction survey

Please take a few minutes to complete our short survey and help inform us about your experience of sleep dysfunction.
www.meresearch.org.uk www.meresearch.org.uk
What is your experience of sleep dysfunction?

ME Research UK wants to present its work and the realities of ME/CFS in ways that are relatable to supporters. The following survey focuses specifically on sleep dysfunction (sleep difficulties) – one of the core symptoms of ME/CFS.

The lived experiences of those affected convey the reality of the disease in the most direct way possible. We are collecting anonymous quotes from individuals with confirmed or suspected ME/CFS on various symptoms to be used at our discretion online, in print, and for internal organisational education.
Click to expand...

See the article for more details and for info on privacy and confidentiality.

Their news item posted just before the survey announcement is a general discussion of sleep dysfunction in ME/CFS:

Sleep dysfunction in ME/CFS

Sleep is essential for restoring and repairing the whole body, including the brain, and for processing memories. The vast majority of people with ME/CFS report having sleep difficulties, and research suggests that poor sleep quality is often associated with reduced quality of life. As sleep...
www.meresearch.org.uk www.meresearch.org.uk
 
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