USA: News from #MEAction

[Yann04]

Pity that newsletter gives no actual detail on what 'measures' of PEM are being considered. I find it hard to think how that could be done.

Especially a little sceptical of the “labratory measures”.

 

[ahimsa]

Posted on the #MEAction website on July 22:

#MEAction’s Pacing Narrative Data Gets Published in First Paper + MORE Science updates!

We are excited to share some promising updates about the scientific work #MEAction is leading to advance the field of ME/CFS research.

Our Scientific Director, Jaime Seltzer, is in the process of coordinating analysis for three major studies, including our massive symptoms survey and pacing survey, drawn directly from the patient experience. Jaime is also working hard on a third big data study, which has to remain under wraps for now, but stay tuned!

We know that patient experience is the foundation for good research. That is why our research is focused on delving deep into patient symptoms to uncover patterns and extrapolate knowledge that can help guide the search for effective treatments.

Link to study that uses data from the Pacing Narrative Survey:

A Signal for Voice and Speech Abnormalities in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome