Congress launched ARPA-H (the Advanced Research Projects Agency for Health) this past March to focus on high-risk, high-reward research projects with the goal to solve intractable health problems. As ARPA-H is in the process of hiring its first cohort of program managers, #MEAction and a coalition of chronic disease advocacy…
BOLD ACTION to me, means mobilizing our community to publicly demonstrate our deep and intense—as opposed to shallow and passive—commitment to seeing healthcare justice for people with ME. It is about bringing our issues to the forefront of public consciousness and putting strong pressure on our leaders to act. Taking…
Caroline Kingdon’s new paper on the NICE guideline for ME was co-written with #MEAction UK volunteer Adam Lowe, as well as Charles Shepherd of the ME Association and Luis Nacul of the London School of Tropical Medicine. As members of the NICE guideline development committee, the authors wrote this paper…
The article published in NY Magazine on Nov 4, 2022, “Has Long COVID Always Existed? The pandemic might not have spawned a new chronic illness but rebranded an old one,” was a disappointing step back 30 years to a time when the science of post-viral conditions was young. Back then,…
New York Magazine’s Intelligencer published an fallacious article last week about Long COVID and ME/CFS in which the author, Jeff Wise, paternalistically argues that graded exercise therapy (GET) and cognitive behavioral therapy (CBT) can successfully treat patients if only the ME and Long COVID communities were open to this possibility.…
Solve M.E. supports research into the underlying causes of ME/CFS and Long Covid through the Ramsay Research Grant Program, an open, peer-reviewed competition for grants to support pilot studies and data analysis. The Ramsay Program has been successful in attracting new scientists to the field of ME/CFS, providing much-needed funding…
Taking BOLD ACTION with our press outreach has led to national media writing about ME. Nothing says BOLD ACTION like our press work. We are working daily to cultivate relationships with journalists and educate the press about ME, and we are seeing immense results. In the past few weeks alone,…
#MillionsMissing France has been busy. This month, in tandem with Adapted Physical Activity Expert Gilles Thöni, the association addressed the French National Authority for Health (HAS) requesting, as they have since 2020, that the HAS focus of aspects of their diagnostics policy on Post-Exertional Malaise (PEM), a hallmark symptom for…
Last week, two standout members of our community — Dr. Peter Rowe and Cynthia Adinig — participated in a satellite media tour (SMT) with 27 different TV and radio stations broadcasting to local audiences all over the United States. To date, the interviews have aired to an audience of nearly…
Code change will ensure US can track diagnosed cases of ME/CFS in newly created electronic health records... The post New Diagnostic Codes for ME/CFS in the US ICD-10-CM appeared first on #MEAction Network. Read More >>