On Wednesday, September 23 the CDC held its ME/CFS Stakeholder Engagement and Communication (SEC) conference call and the #MEAction community showed up to make our voices heard! Here is our initial summary of what you need to know.
Mark your calendars! The CDC will hold its next ME/CFS Stakeholder Engagement and Communication (SEC) conference call on Wednesday, Sept. 23 at 3 pm Eastern Time. Find information on how to call into the meeting here. The CDC program staff only hold SEC meetings a couple of times a year so now is your chance to participate! These
The Mayo Clinic recently removed harmful recommendations of Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) for myalgic encephalomyelitis (ME) from their website, a win for people with ME and their families. The site still contains problematic language and misleading information, but this recent change could help many individuals seeking care for their ME. For
Me in the news #MEAction media resources: Press Kit | Press releases | #MEAction in the News | Our Photos | Our Videos | Contact Resources for reporters covering ME: What is ME? | Selected Media Coverage of ME | Films and books about ME Selected press coverage about ME in the mainstream media. Email [email protected] to alert us of important news items on ME. Also, we have a more thorough database
What a Summer for Advocacy and Education! We know the summer isn’t over yet, but A LOT has been happening with ME advocacy and education in the United States and the United Kingdom, and we want to make sure you are up to date, in the loop, and ready for next steps! National Institutes of Health (NIH)
#MEAction UK has written a letter of complaint to Good Morning Britain in response to recent statements from Dr Hilary Jones on the programme, regarding the rehabilitation of long COVID patients. In his interview with Kate Garraway yesterday, Dr Jones recommended graded exercise as a strategy for those recovering from COVID-19. There is now a
Last week was inspiring and eventful! We had a huge turn-out for our US Advocacy Meeting about the National Institutes of Health’s (NIH) response to long Covid and ME, we co-hosted and organized a seminar for those with long Covid with amazing organizations and activists, #MEAction UK wrote an open letter to the National Institute for Health
#MEAction UK have once again written to the National Institute for Health and Care Excellence (NICE) imploring them to act to safeguard people with ME from harm, after their recent statement cautioning that the recommendation of graded exercise therapy should not be assumed to apply to patients with post-COVID symptoms. Development and publication of the new ME/CFS
A growing number of people report persistent symptoms long after being infected with the SARS-CoV-2 virus. The “long-haulers,” a name coined for long-term COVID-19 patients, experience ongoing fatigue, headaches, shortness of breath, muscle pain, sleep disturbances, cognitive impairments, intermittent fevers, and more.
#MEAction in the news #MEAction media resources: Press releases | Photos | Videos | Primer for Reporting on ME | Contact General Media Resources: What is ME? | Images Illustrating ME/CFS | Films and books about ME Email [email protected] for more information. There has been a tidal shift in the media’s interest in post-viral illness
