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 collected at home and sent
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 reality for people living with ME. I’m optimistic the guidelines will be published.”
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 community, which cherry-picked examples of
#MEAction UK will be sending a representative to the NICE roundtable discussion on the final ME/CFS guideline, and have had a pre-meeting with NICE to raise our concerns about the delay to publication.
#MEAction is proud to be a founding member of the World ME Alliance, a coalition of national ME/CFS organisations, which announces today a major name change and rebrand from the International Alliance for ME. To modernise and promote its unique role, the World ME Alliance is launching a new website, with a new name, logo,
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the
NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine
Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM). Today, ME/CFS does not exist in the US ICD-10-CM. Instead, most US doctors assign the code for chronic fatigue
Do you ever wonder where your money goes when donating to your favorite charity? We certainly do! Why? Because we want to make sure that every gift we receive generates the greatest impact in our collective fight for research, medical education, and public recognition of myalgic encephalomyelitis/chronic fatigue syndrome. This is why we wanted to
As part of the coalition Forward-ME, MEAction UK is pleased to share below, the latest statement from the group regarding this week’s pause by NICE of new Guideline publication. ME CHARITIES BAFFLED BY DELAY TO NICE GUIDELINE Statement on the delay to publication of the NICE Guidelines on diagnosis and management of ME On Behalf
