Roadmaps/Conferences/Advocacy Week/Webinars/Seminars Oh My…
Things are happening...so many things are happening (or have happened). In an effort to keep up with them - and not to miss some very timely events - I'm going to try and pack as many as I can find into one resource blog. Time-Sensitive Events Solve M.E.'s Advocacy...
Sleep Issues in People with ME – A Conversation with Professor Dorothy Bruck
Health Rising's Sleep Series Pt. I – Dr. Bruck Interview - Bronc kicked the series off with an interview of Dr. Bruck - a retired sleep researcher whose son has ME/CFS. Pt. II – Ruhoy and Kaufman on Sleep - an overview of a fascinating talk by two long-term ME/CFS/FM...
The Nath Intramural ME/CFS Study Pt. II: Missed Opportunities, Misreadings and… Success (?)
The second part of a 3-part series of blogs on the “Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome” study looks at who was in the study and how they were selected, how severely the study was truncated by the pandemic (quite...
The Nath ME/CFS Intramural Study Pt. I: “It’s a Brain Disease…”
"One takeaway is It's a disease that comes from the brain" Nancy Klimas It was one of the most expensive ME/CFS studies ever done. The brainchild of former NIH Director Francis Collins, the unusual study was designed to give the NIH solid footing to move forward in a...
The NIH ME/CFS Roadmap Metabolism Webinar – Duration Matters, Exhausted T-Cells, Abnormal Lipids and Muscles
The Metabolism webinar is part of the ME/CFS Research Roadmap effort. The effort was put together by Dr. Koroshetz and Vicky Whittemore as a way to advance chronic fatigue syndrome (ME/CFS) research at the NIH. The Roadmap effort was conceived pre-COVID, then was...
Struggling Long COVID RECOVER Initiative Gets $500 Million Lifeline
Recovering RECOVER? They had to do something. With the money running out next year, the NIH and its RECOVER Initiative were looking at pulling the plug on over 80 clinics and kissing the $1.15 billion Congress had invested in the program goodbye - all the while hardly...
Rachel’s Valentine’s Day Brownie Recipe for People with ME/CFS and Chronic Illnesses
I recently wrote about Rachel Riggs' forthcoming cookbook for people with ME/CFS and similar chronic illnesses and her commitment to donate the royalties to OMF. This cookbook is unique. Its goal is to create the possibility of good-tasting food for people with food...
The Nanoneedle for ME/CFS is Back!
"We posit that this assay can potentially offer an outstanding biomarker to rapidly and inexpensively diagnose ME/CFS with high accuracy. In addition, this assay may offer a remarkable opportunity for the discovery of new treatments for this debilitating disease." ...
ME/CFS, MCAS and Gynecological Disorders – Klaus Wirth’s Blood Vessel Diseases
People with chronic fatigue syndrome (ME/CFS) are not alone. Nor are people with fibromyalgia (FM) or dysautonomia or migraine. We all exist in a swirl of allied illnesses. ME/CFS experts recognize that, but researchers who typically get trapped in disease silos - not...