Patients in the Ampligen clinical trial are asking for community help to protest changes that will force many to stop getting this medicine. Please sign our petition urging Hemispherx to put ME patients first, always.
A member of the Shaw family reads their testimony during the comment period at the January CFSAC meeting: Good afternoon. I have had untreated ME/CFS for 38 years. Our testimony today is on the topic of the Center for Diseases Control’s (CDC) CFS group. The 2015 National Academy of Medicine report characterizes post-exertional malaise, or
The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). The committee meets twice-yearly, and recently met Jan. 12-13, 2017. #MEAction activist, Terri Wilder, spoke during the comment period at
On Tuesday 24th January a Bristol Cable article from the #stopGET team about children with ME, FITNET, MAGENTA and patient opposition to GET/CBT will go online.
Thank you for this opportunity to address the CFS Advisory Committee. I am writing to in response to the call for comments regarding how the US government might engage members of the ME/CFS community, especially patients and their lay supporters, in addressing and solving the clinical, research, educational, and public health challenges of this condition.
2016 was a big year for ME/CFS advocacy. As we turn over the page to the fresh new year, the #MEAction Network Australia group reflects on some of the highlights of its advocacy efforts in 2016.
We’re excited to announce the winners of the #MillionsMissing Art competition. 1st prize went to CJ Janzen from Cambridge, Ontario who made two amazing songs about ME. Listen here: Myalgic Encephalomyelitis Song – Rough by CJ Janzen | Free Listening on SoundCloud A Song For M.E. by CJ Janzen | Free Listening on SoundCloud 2nd
Friday Letters to Francis Collins
The CFS Advisory Committee want to hear from YOU!
Momentum continues from the #MillionsMissing campaign that was born last May. Activists took to the streets worldwide in 11 cities in May – and in 25 cities in September – to protest their government’s neglect of people with ME. While the posters are now stored away, activism has continued behind the scenes in follow-up
