Be part of M.E. Research
October 25, 2021 The ME/CFS Priority Setting Partnership (PSP) is giving you the opportunity to define your top ten priorities for future ME/CFS research. In partnership with the James Lind Alliance,… Read more >>
Statement from Forward-ME on NICE Roundtable
After NICE held its roundtable to discuss the new ME/CFS guideline, Forward-ME (which #MEAction UK is a member of) have produced the below statement. Clinician and Patient Support Confirmed for new NICE Guideline on ME/CFS. On Monday, Forward-ME and member charities attended a roundtable to review the new ‘NICE guideline…
Clinician patient support confirmed for new NICE guideline
October 22, 2021 Statement from Forward-ME: On Monday, Forward-ME and member charities attended a round table to review the new ‘NICE guideline on ME/CFS’ with representatives from NICE and clinical… Read more >>
Is NIH blowing another opportunity to advance ME/CFS research?
Be sure to attend the telebriefing by the Trans-NIH ME/CFS Working Group this Friday (10/22) at 3PM ET. The National Institutes of Health (NIH) has many questions to answer about its lack of tangible progress or strategic acceleration of medical research for people with ME. Read Our Questions for NIH…
“The treatment of ME has been Dickensian” – NICE’s roundtable on the ME/CFS guideline
After NICE's roundtable, Janet Sylvester tells us: “I felt this was a positive meeting. There were large areas of agreement from all attendees, including all acknowledging the terrible experiences people with ME have had to endure. Together, the representatives from ME patient organisations were able to strongly get across the…
Stanford study enrolling now
Who: Ron Davis’s lab at Stanford University is conducting a functional microbiome study in collaboration with Harvard University and Vassar College. They are looking for severely Ill, primarily bed-bound patients within the United States to participate. What: Participants will be asked to provide a one-time fecal swab which can be…
NICE round table: Forward-ME update
October 18, 2021 Update from Forward-ME on this afternoon’s roundtable event hosted by the National Institute for Health and Care Excellence (NICE) today. The event will aim to discuss key issues… This post first appeared on Action for M.E. Read more >>
GPs keen to learn about M.E. at conference
October 14, 2021 The Royal College of GP's annual conference is the must attend-event of the year for GPs and practice team colleagues, showcasing the latest clinical and policy developments across… This post first appeared on Action for M.E. Read more >>
NICE round table agenda now published
October 13, 2021 On Monday, Action for M.E. will attend a roundtable meeting hosted by the National Institute for Health and Care Excellence (NICE). NICE has invited representatives from a range of… This post first appeared on Action for M.E. Read more >>
A Response to New Yorker Article on Long COVID
A person with ME (who wishes to remain anonymous online) sent this letter to the author of The New Yorker article, “The Struggle to Define Long COVID,” and to the magazine’s editor. #MEAction was also concerned to see The New Yorker publish such a disparaging and flawed article about the Long COVID…