For those of you who don’t use Facebook. Below is a list of the external links shared within our Facebook Group during September:
“What is it like living with fibromyalgia? Difficult, unpredictable and painful.”
Experts launch world’s largest genetic study of ME
Twitter – Maya Henning – #LongCovid and #MECFS are not psychosomatic diseases.
This thread 🧵 lists studies in which neurologic, immunologic, cardiovascular and other physical abnormalities were found in #LongCovid and #MECFS patients.
The thread will be gradually expanded by further studies.
Twitter – Teunkea Arvo – 1/ 🧵 A hallmark of the illness ME, also known as ME/CFS is a bad response to and tolerance of effort and exercise.
I have collected a bunch of papers, threads and articles about this. Unfortunately I do not have the time or energy to write a coherent thread abt it. #MECFS
Course of illness survey 2022
Flippin’ Pain Formula: Learning resources to transform your understanding of pain
Care Opinion: Share your experiences of UK health and care services, good or bad.
We pass your stories to the right people to make a difference.
https://www.careopinion.org.uk/?fbclid=IwAR1Rg12Otw_1MyydriBjEOScxg5BH8T_fDpKZsAqCFn6Vi75LXLJ_U-n5dY
Survey of Individual Volunteers 2022
Work underway to support the development of a Delivery Plan on ME/CFS
SNP government under pressure as ME sufferers make £6m plea amid Long Covid ‘alliance’
Help us create the world’s largest study of the causes of ME/CFS
Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients
https://pubmed.ncbi.nlm.nih.gov/36121803/
Medical Matters: Tinnitus
Dr Charles Shepherd and the ME Association’s other advisers answer questions from members of the MEA.
Q: Is tinnitus more common if you have ME/CFS?