National Institutes of Health researchers who began what may be the deepest biological investigation ever of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are writing up their findings and plan to circulate a draft among their large team of scientists and physicians for feedback soon. “The study will help patients and should move the field forward in
#MEAction continues our advocacy for the #MillionsMissing in a recent meeting with the Office of Disability Employment Policy (ODEP) at the U.S. Department of Labor (DOL) where we presented on community issues affecting people with ME and Long COVID and offered policy recommendations that DOL can take to address them. President Biden’s Memorandum tasks DOL
Sharing information about ME (folders) and exhibit of shoes with patient’s stories. Wear your MillionsMissing T-shirt if you have one. Bring coffee/tea and cake.
RETURN TO PART 1 OF THIS SERIES HERE ME/CFS ON THE ITALIAN TV SCREEN: A VIRTUOUS MODEL by Giada Da Ros Through sundry television spaces (news, fiction, talk shows), the ME/CFS community challenged existing political, medical, and philosophical approaches to the illness (and to maladies in general). The community sought to re-appropriate the discourse, fight
#MEAction’s #MillionsMissing Global Virtual Event on May 12th at 10am PT/1pm ET/6pm UK! Join ME community members and change makers for this amazing event. The event will be an opportunity for our community to gather to experience the stories of those with ME, gain insight from doctors and researchers, connect with those living with Long
This year, we are excited to announce that #MillionsMissing will be held in two parts: May and September! #MillionsMissing is about demonstrating our community’s collective refusal to let the stories of people with ME be erased, or access to healthcare and medical research blocked. We protest against all barriers to justice for the growing community
ME/CFS IN EARLY TV DISCOURSE: QUESTIONING GOVERNMENTAL POLICIES AND CHALLENGING THE CONCEPTIONS OF DISEASE AND MEDICINE by Giada Da Ros As patients who suffer from it well know, myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a life-altering, debilitating, chronic, systemic disease that frequently and dramatically limits the activities of affected patients (Open Medicine Foundation).
What a year 2021 was! People with ME have always faced formidable challenges: every day combatting stigma, lack of understanding from clinicians, NIH’s and CDC’s low budgetary commitments, and a world of challenges navigating disability on top of symptoms. It’s no exaggeration to say that 2020 and 2021 changed the world – and the world of chronic,
Join #MEAction for our first exciting “Writing From Our ME Lives” Salon on Friday, January 21st at 12pm PST/3pm EST, held virtually via BlueJeans. This live Salon will feature readings by the authors of both comic and serious, stories, scenes and poems, that were created for the weekly virtual meetings, commonly called “Pillow Writers”, over
A People with ME writing group! Come, Try it out!! #MEAction is excited to partner with longtime ME advocate and mother of a pwME, Bobbi Ausubel, to host a brand new writing group for people with ME, Pillow Writers. This group is for people with ME who are interested in writing stories, tales, poems, essays,
