It has been been an exciting time for the myalgic encephalomyelitis (ME) community these past few weeks. We are in awe of the sacrifices and hard work people with ME and their allies have made to make their voices heard.
#MEAction and the Solve ME/CFS Initiative organized the largest Advocacy Day ever with more than 200 people with ME and their allies storming Capitol Hill last Wednesday. Advocates flew in from all over the country, and held 140 meetings with Members of Congress to build support for ME.
The same day, just twenty miles from Washington, D.C, #MEAction took the opportunity to connect with young researchers about ME by helping to organize the Young Investigators Workshop the day prior to the NIH conference.
On Thursday, the National Institutes of Health – the federal agency that funds disease research in the U.S. – held a two-day conference about “accelerating ME research” in which 30 scientists presented their findings on ME, including in areas of metabolics, neuroinflammation, immunology, and the microbiome.
In the UK, the Forward ME Group, which includes #MEAction UK, published
survey results in which 2,274 respondents confirmed that graded exercise therapy (GET) is harming the vast majority of people with ME receiving this treatment in the UK.
