The story so far NINDS, the National Institute for Neurological Disorder and Stroke at the NIH has solicited an RFI, or a Request for Information, from the ME community on how to advance research for myalgic encephalomyelitis. With only a few weeks’ turn-around, the #MEAction NIH working group produced a compelling response based on information conveyed in
#MillionsMissing – organised by #MEAction – has been such a successful campaign this year, and we thank everyone in the ME community for your part in this. At #MEAction UK we are building a movement. We’ve grown #MillionsMissing, a campaign for health equality for ME, from a single protest in London in May 2016 to
Erica Verrillo is the president of the American ME and CFS Society, a 501(c)(3) nonprofit. May is the month for acknowledging the Millions Missing – the millions of ME/CFS patients who, through the years, have suffered from poor medical care, insufficient research into the cause and mechanisms of the disease, and a paucity of clinical trials
Simmaron Research is conducting a one-of-a-kind study to analyze data from ME/CFS patients who respond to treatments like Ampligen®, IVIG, and cidofovir, and we need your help funding this data analysis! Our goal is to publish peer-reviewed data to stimulate treatment trials and inform rigorous trial design ASAP!
My name is Robert Jacobs, MD and I am a retired Physician and caregiver for my wife who has had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for more than 9 years. Despite the historical, tourism and quality-of-life allure of this beautiful state, we discovered a paucity of medical care available to patients with ME/CFS, minimal medical
***UPDATE: THIS ACTION IS NOW OVER*** Please contact your SENATORS and urge them to co-sponsor a ME/CFS Awareness Day Resolution NOW! Although the original co-sponsors would like to receive sign-ons as soon as possible and ideally by COB Wed, May 8th, they’re willing to accept co-sponsors up until the passage of the bill, targeted for this
[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””]I miss teaching. I miss making a difference.[/pullquote] Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from people’s lives. People with ME may struggle with their identity through the loss or great change in their careers. Below are stories of individuals who found their careers
Australians with ME/CFS are routinely rejected from the country’s National Disability Insurance Scheme (NDIS), because the Australian government doesn’t consider ME/CFS to be a permanent condition for most living with the illness. Sign this petition to support Aussies with ME/CFS and demand policy change!
Aging can be a challenging time for anyone but people with the debilitating, chronic disease of myalgic encephalomyelitis (ME) often find that their symptoms are dismissed as a “normal” part of aging, and so are left without the diagnosis, care and support that they need from their medical providers and community to manage and treat a
Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. Parents with ME are missing precious days and years with their children due to the disease, and parents of children with ME are fighting to provide care for their sick children in a world where there is scarce medical knowledge, treatments
