#MEAction, Author at #MEAction Network

Welcome Jaime Seltzer to the #MEAction Team – Director of Scientific and Medical Outreach

June 11, 2018 4 Comments

Thanks to your generous support of our Indiegogo campaign, #MEAction is adding a new team member! We’re thrilled to welcome Jaime Seltzer as our Director of Scientific and Medical Outreach. She will work with ME clinicians and researchers in order to facilitate engagement with the patient community and the public, inspire new scientists and clinicians

Learn More About the UK Parliamentary Briefing

June 7, 2018 3 Comments

A key briefing to help parliamentarians understand the issues facing people affected by M.E. has been co-authored by #MEAction UK, the ME Association, Action for M.E., and the ME Trust. Read the Parliamentary briefing. Our collaboration on this was prompted by a discussion with the UK team responsible for the impact campaign for the M.E.

UK MPS Secure Westminster Hall Debate on ME

June 6, 2018 6 Comments

Mark your calendars! A 3-hour Westminster Hall debate on Myalgic Encephalomyelitis (ME) treatment and research has been scheduled for Thursday, 21st June, 1:30-4:30 p.m. The fight for a larger debate on ME has had cross party support with Carol Monaghan MP securing the debate, along with the support of five other MPs. #MEAction UK and

Make yourself Heard before U.S. Health Officials – Submit your Comment to CFSAC by June 13

June 6, 2018 3 Comments

You showed up for #MillionsMissing, now is the time to show up before our federal agencies to demand that they take urgent and strategic action for people with Myalgic Encephalomyelitis. The Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold its bi-annual meeting on June 20th and 21st, and we need to fill up the time

MPs Fight for House of Commons debate on ME in UK

June 5, 2018 No Comments

MPs across the parties in the U.K. came together today to argue the case for scheduling a debate about Myalgic Encephalomyelitis (ME) in the main chamber of the House of Commons. Watch the video below. Carol Monaghan MP joined five other MPs on June 5th to argue the merits of holding a debate on ME

Scottish Action – Urge your MSP to Support Petition for ME

June 1, 2018 12 Comments

by Kim Gurav and Susan Cole #MEAction Scotland volunteers have been called before the Scottish Parliament’s Petitions Committee on Thursday, 7th June to give evidence on their petition to review treatment of ME patients in Scotland. The petition has received 7,000 signatures, and calls on the Scottish Government to invest in biomedical research into ME,

“Listened to but were we heard?” The NICE guidelines scoping workshop

May 30, 2018 No Comments

On 25th May 2018, NICE held an engagement workshop with stakeholders, looking at the draft scope for the new guideline on ME/CFS. This is the second workshop held by NICE in which stakeholders were given a chance to influence the development of the new guidelines. The draft scope will be amended based on this workshop

U.S. Votes to Track ME/CFS on BRFSS Survey

May 26, 2018 5 Comments

Back in March, we urged you to take action and inform your state health officials and departments to begin tracking ME/CFS as part of the their annually-conducted Behavioral Risk Factor Surveillance System (BRFSS). Many chronic health conditions are tracked using this system. State health departments use the data collected to plan health projects and allocate resources; national

Thousands sign letter to be delivered to Francis Collins

May 25, 2018 3 Comments

On May 24th, 2018, we delivered this 580-page letter to Francis Collins, with over 7,000 signatures, photos, and personal comments. We are demanding urgent action to increase funding for research, find a diagnostic test, support clinical trials, and develop treatments, and a meeting to discuss all this with NIH Director Francis Collins. We also sent this video

Victory for #MEAction NY Activists: State Publishes Webpage about ME

May 25, 2018 1 Comment

The New York State Department of Health has recently established a new webpage about Myalgic Encephalomyelitis (ME) on its website, thanks to the hard work of #MEAction activists. New York is one of only three states in the U.S. that has a page on ME. (Illinois and Wisconsin have some information about chronic fatigue syndrome.)

Author: #MEAction