People with ME, Long COVID and other complex, chronic diseases have experienced all kinds of healthcare discrimination. Now there is an opportunity for you to share your story and urge our government to move forward with improved protections to secure access to healthcare that is free from discrimination or prejudice. The deadline to submit a
#MEAction is advancing ME/CFS advocacy efforts through our ongoing engagement with U.S. federal agencies, including at the Department of Health and Human Services (HHS). We continue to fight for our government to do more to meet the needs of people with ME, and to ensure that the evolving Long COVID federal response includes ME/CFS. Read
Last month, our community marshaled together in a mass protest on social media to tell the U.S. Health and Human Services (HHS) that it had NOT accomplished its job when it suddenly dissolved the federal advisory committee – known as CFSAC – that makes recommendations on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), and coordinates across federal agencies
We will protest the U.S. Department of Health and Human Service virtually, on social media, on Friday, Sept. 14th. We have canceled the in-person protest in Washington, D.C. due to the fact that a hurricane is headed for that area on Thursday. We will reschedule the Washington, D.C. protest for a later date. Our virtual protest on Friday,
If you were on the CFSAC committee, you awoke to the following email in your inbox yesterday morning: Good morning, I’d like to personally extend my gratitude to you for serving as a member of the Chronic Fatigue Syndrome Advisory Committee (CFSAC).Your input as a subject matter expert in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has
As reported in the August 5 update on the meeting between HHS and advocates for ME on August 1, Assistant Secretary of Health Dr. Karen DeSalvo had committed to follow up on specific actions and meet again in October. On October 24, Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock met again
A meeting with Karen B. DeSalvo, the Acting Assistant Secretary for Health at the US Health and Human Services (HHS) and the National Coordinator for Health Information Technology, will be held this August. The meeting was arranged in direct response to a request made around the May 2016 #MillionsMissing protests. In May 2016, #MillionsMissing protests
After responding negatively to most of CFSAC’s recommendations for the ME/CFS research program, the NIH has now revised many of their responses to better address CFSAC’s requests. Following the announcement of the NIH’s new ME/CFS research program, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) submitted formal recommendations to the agency about how the program should be structured. These recommendations
Solve ME/CFS Initiative Grades HHS on CFSAC Response The Solve ME/CFS Initiative has created a report card for HHS’ response to the recommendations made by the Chronic Fatigue Syndrome Advisory Committee (CFSAC) after its August meeting. The grades the organization gave on the HHS response to the 13 CFSAC recommendations range from A- (one) to F (four).
Call for HHS to Investigate PACE Recently, journalist David Tuller, DrPH, published an investigative report outlining serious concerns with the conduct, analyses, and results of U.K.’s £5 million PACE trial for chronic fatigue syndrome. PACE investigated the efficacy of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) Since then, other researchers and journalists have
