#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.

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Pacing Narrative Survey First Paper Published!

The first paper using the data from our Pacing Narrative Survey was published recently! A Signal for Voice and Speech Abnormalities in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Stephanie

Grach, Jaime Seltzer, and Diana M. Orbelo builds the case for vocal changes as a marker for or predictor of post-exertional malaise (PEM).  Vocal changes are one of many symptoms we know are part of PEM, but that aren’t widely understood in the clinical and research communities.  We took this step because you told us about vocal changes:

• Voice: "My voice sounds raw"; "hoarse throat with no voice."

• Speech: "Loss of speech"; "Sluggish speech slurs middle words."

• Words: "Unable to move to articulate words"; "Slurring my words."

• Speak: "Could only … speak 2-3 sentences"; "Inability to speak."

Some subject responses regarding how their speech changes during PEM.

685 people with post-exertional malaise took the Pacing Narrative Survey, generating 1.6K narrative responses: a rich dataset of activity management strategy data for people with ME/CFS and Long COVID, and this first paper is just the beginning. We received a grant that will enable us to transform this patient wisdom into essential updates to clinical care, creating patient education materials to be delivered by Mayo Clinic’s nursing staff. But the potential doesn’t end there. We’ve spotted many unique, never-before-captured themes around pacing and PEM, and can’t wait to share them with the clinical and research communities… sharing what you already know with new patients and clinical and research professionals alike.

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Educating Clinicians and the Public about ME

Our Scientific Director is busy preparing to present at the IACFS/ME conference this fall on using data from the Symptom Cluster Characterization study.

And, in case you missed it, Jaime also gave an impactful presentation for

the ME/CFS San Diego group where several attendees reported they planned to use her presentation as a reference for years to come.

Jaime also advised the SciShow in their making of an episode about how exercise can be harmful for people with ME, including details around the PACE Trial.

A note of praise from the ME/CFS San Diego event coordinator:

"...you don't know how many people have been messaging and talking about the video. Many are not able to watch in real-time (or like me will have to watch in tiny pieces) and I have heard amazing feedback. [A participant ] (who has been to so many talks, conferences and events - said he plans to watch it again and take notes because he was so impressed.

Thank you - you reached people who don’t tend to have access to this type of information and we are all grateful!"

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Translating Popular MEpedia Pages

#MEAction founded MEpedia to create a crowd-sourced knowledge base on the history, science and medicine of ME and related diseases. Our articles have been viewed 55+ million times!

We recently created German and Spanish versions of our ten most popular pages. We asked sensitivity readers with lived experience to go through the translations to ensure that the wording was accurate, utilized respectful phrasing, and was written in a straightforward, informative tone.

Support Our Work!

We are so grateful for our community’s support to keep our research going! If you are able to make a donation - or share this work with your network - we so appreciate it. Plus, we still have our $25K match - give today and your donation will be doubled!