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
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
Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. We received heart felt stories from around the globe chronicling journeys with ME. This week we touched on parenting, aging, marginalization, and careers. Today we want to share more of your stories. While not all of these stories fit into
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
In January 2019, a survey investigating the impact of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for people with ME, CFS or PVFS diagnoses in the UK was made available online. It was intended to provide up-to-date data on the impact these therapies have had on people who have been offered or received
Listen to the recording: #MEAction UK Lay Summary of the 2019 Forward ME Group CBT & GET Survey Topline findings A new patient survey of 2274 respondents has confirmed that graded exercise therapy (GET) is harming a large majority of people with ME receiving this treatment in the UK. A majority of people with ME
#MillionsMissing 2019 is fast approaching, and now is the time to get started! Demonstrations calling for health equality for Myalgic Encephalomyelitis (ME) will take place around the globe throughout the week of May 5th – 12th, 2019. We are only two months away! How will you join the movement? Check out our toolkit and determine
You still have one week left to register for Advocacy Day 2019 in Washington, DC! You may be trying to decide whether or not you should come (and, please, put your health first) or send a loved one in your place, so we thought we would ask some people who have attended about their perspective on Advocacy
Listen to the article: We are thrilled to announce #MillionsMissing 2019! This May, we will take to the streets – or demonstrate from our beds – to show the world we are here, we are the #MillionsMissing, we will continue to fight for our demands for people with myalgic encephalomyelitis (ME). We’ve made important
April is going to be an incredibly exciting month for advocacy and for research into ME! The NIH is hosting a conference on ME in early April along with a Young Investigators Workshop specifically geared towards early-career investigators with interest in ME. Concurrently, there will be a Congressional lobbying push hosted by #MEAction and SMCI
