COVID-19 has significantly changed our lives in so many ways. With the recent increase in funding to study long COVID, there is understandably mixed-feelings in the ME community. While everyone wants those with long COVID to have the success people with ME so desperately deserve, for some, there is a fear of ME being lost
Editor’s note: This update is provided by Thane’s care team. UPDATE: Friday, February 5 , 2021 Thane was released from the hospital today and is home! j UPDATE: Wednesday, February 3 , 2021 Thane’s lawyer shared with us that the evaluation went very well on Monday morning. Thane agreed to a “continuance for dismissal,” which means that
PwME appeals for help “They’re trying to commit me to a mental health ward with very severe ME… I need help.” This how a brief and urgent email appeal to #MEAction began last Friday. The email was from Thane Fredrickson (also known as Thane Black on social media), a person with very severe ME who
#MEAction UK’s press team was instrumental in getting an excellent article published in the Daily Mail at the beginning of January. The article criticises the blanket advice of GPs to recommend exercise for long COVID patients without taking into consideration those with symptoms of ME, particularly post-exertional malaise.
Moving short film “This is ME” shares more in nine minutes than most people with ME can begin to share in words alone.
#MEAction UK volunteers have worked to produce a robust and comprehensive response to the draft ME/CFS guideline from NICE.
#MEAction UK has just received a momentous email from the National Institute for Health and Care Excellence (NICE), advising us that they have updated the warning on the 2007 CFS/ME guideline, directing health professionals to the new draft recommendations on graded exercise therapy.
Today we announce that #MEAction’s co-founder and executive director, Jennifer Brea, is going to be transitioning to a board position so she can take time to focus on her health after five intense years of ME and advocacy. This will not happen immediately- we will be working hard to find a new Executive Director first!
Harmful graded exercise therapy for people with ME has been dropped in a new draft ME/CFS guideline from the National Institute for Health and Care Excellence (NICE).
Last week the U.S. National Institutes of Health (NIH) announced it will hold its next ME/CFS Telebriefing on Thursday, Nov. 5 at 11am Eastern Time. #MEAction staff and volunteers worked quickly to draft a letter with detailed questions for NIH in advance of this meeting. You can read the full letter here. We will keep
