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Celebrating Our Wins for ME!

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.

Meanwhile, #MEAction staff and the community are revving up for our global #MillionsMissing protest to let our governments know that we continue to demand equitable research funding, and appropriate treatments and clinical care, and that we are not going away. So far, 75 cities have registered events and 219 people have indicated that they will demonstrate from home on social media. Learn more about organizing your own demonstration. 

We are so proud of our community for its hard work in making these moments happen, even as we know these victories are only stepping stones on our way to achieving equitable research funding, treatments and clinical care. The fight continues!  

NIH Conference

Thirty scientists presented their findings on ME, including in areas of metabolics, neuroinflammation, immunology, and the microbiome, at the NIH conference in Bethesda, Maryland. Nearly 1,000 people joined the conference, many watching online from home.

“Having scientists and medical providers validate the fact that ME is a complex biological disease affecting many systems in the body reinforced the absolute reality that more resources must be dedicated to ending this horrible disease,” said Terri L. Wilder, MSW, a member of #MEAction New York, and on the committee helping to organize the conference.    

“I want a plan to end ME by 2025. Our community deserves it. If our government doesn’t immediately step up to the plate in a very real way to end the ME epidemic and the stigma surrounding it all of these scientific gatherings will be for nothing.”

Watch videos from the two-day conference here.

#MEAction tweeted throughout the conference; check out tweets from the conference using the hashtag #mecfsatnih19

 

Also, check out this long twitter thread of Anthony Komaroff, MD,  summarizing more than 30 talks.

#MEAction was able to provide travel scholarships to medical practitioners and medical students to attend the NIH conference due to the generous donation from a private family foundation. Read about the scholarship winners!

At the Young Investigators Workshop the prior day, #MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, presented information about #MEAction’s Research & Clinical fellowships and how #MEAction can help all career researchers with resources like MEpedia, spreading the word about enrolling studies on our website and daily newsletter, posting to local Facebook groups for research participants, and our research review.

Advocacy Day 2019

#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. Advocates from home sent in 2,262 messages asking their Members to support our “asks.”

This year the focus of Advocacy Day was to ask members of Congress to vote in favor of a ME Resolution in May, support/sign onto the two appropriations letters, and commit to posting a picture supporting the ME community on May 12th. The appropriation letters call for the following actions:  

1) Request $9.9 million for ME programs at the CDC (Labor-HHS committee)

2) Add ME to the Peer-Reviewed Medical Research Program (Defense committee)

Parents flew in on behalf of their children; mothers accompanied their grown children with ME; sisters showed up as allies; spouses supported their sick partners. Constituents gathered by state to prepare for their meetings, bonding during their training sessions, and at the reception hour. The groups disbanded across Capitol Hill for their meetings, reconvening to rest and debrief at a special room set aside in the House building for ME advocates.       

Blue Bloods actress, Amy Carlson, joined the advocates in Congress. Carlson’s childhood friend, Anne Berry, died from ME. Listen to Amy speak at the reception.  

GET & CBT Survey

The Forward ME Group, which includes #MEAction UK, published a patient survey of 2,274 respondents confirming that graded exercise therapy (GET) is harming a large majority of people with ME receiving this treatment in the UK. A majority of people with ME report that cognitive behavioural therapy (CBT) led to no change in their physical health; however those who reported a change were more likely to experience deterioration than improvement. More than 3 times as many people reported severe illness after GET than before, and almost 2 times as many reported severe illness after CBT. Read more.

Protecting Children with ME

And, in case you missed it, watch the video of the formidable Carol Monahgan, MP, asking the Prime Minister to stop threatening to remove children with ME from their parents who refuse to subject their children to harmful graded exercise therapy.

    

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