Tag: Chronic Fatigue Syndrome

URGENT: Call your U.S. congressperson: Sign the letter to stop NIH cut

President Trump is proposing to cut the National Institutes of Health (NIH) budget by $6 billion – or about one-fifth of the total agency budget. A cut to the NIH budget will almost certainly impact funding for biomedical research into Myalgic Encephalomyelitis (ME). Bipartisan members of Congress are circulating a letter that opposes this cut, and, instead,

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IL. House of reps shows support for ME

The plight of people living with Myalgic Encephalomyelitis (ME) was heard in Illinois this week. The parent of a young daughter with ME, Amy Mooney, worked with her state representative, Michael J. Zalewski, to introduce a state resolution that recognizes ME as a tragic, disabling disease, and that commits to improving the availability and quality of medical care

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"Unrest" premieres in Copenhagen to major media coverage

There is one more screening of Unrest at the CPH:DOX film festival on March 24th, and then Unrest heads to the RiverRun International Film Festival in Winston-Salem on March 31st. Unrest made its international and European premiere in Copenhagen, Denmark at CPH:DOX, one of the leading festivals for documentary film in the world, on March 17.

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Congress delays vote on American Health Care plan – Act now

Please note: #MEAction welcomes submissions from all contributors regarding issues that affect the health care of people living with Myalgic Encephalomyelitis. This action reflects the viewpoint of the individual submitter and not necessarily of #MEAction. We welcome all submissions regarding the American Health Care Act. #MEAction is a non-partisan organization, and is not affiliated with any political party.

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Coming Out of the Closet

Obviously, I still have not integrated the sick person I am with my self-concept. In my heart, I aspire to be an adventurer. In my brain, I am a popcorn popper of plans and temptations. In reality, I can do one activity and, on a good day, maybe two, but not day-after-day in a row. On a bad day I have to be still. I have to wait for the temporary reprieve that recovery mode will eventually bring.

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SF Bay Area: Get Stanford Some Healthy Controls!

If you live in the San Francisco Bay Area, or know any others who do, please consider asking them to donate blood to the Stanford Genome Technology Center as a healthy control. The blood will be used for multiple purposes, including in Ron Davis‘s ME/CFS research.  If you know individuals who are happy to help

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Join the webinar tomorrow: 6 Ways to Maximize Your Congressional Impact.

Join SolveCFS for their first advocacy webinar on “6 ways to maximize your congressional impact.” Thurs., March 2, 10-11 a.m. PST SMCI Advocacy and Engagement Manager, Emily Taylor, will lead the webinar, which is the first in Solve’s advocacy webinar series: “Power to the Patients.” To register for the free webinar, go here: http://bit.ly/2ln3dIO  

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How an Australian’s FOI request busted open a UK science scandal

The 2011 PACE trial examined the effect of graded exercise therapy and cognitive behavioural therapy against standard medical care, but refused to share their data.
West Australian Alem Matthees filed a UK Freedom of Information Act. The ruling released the data and further examination found glaring problems with the study.

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Thank Senator Markey for promising to help ME patients

On Thursday, Feb. 23, I attended a packed town hall meeting in Northampton, Massachusetts with my U.S. senator, Ed Markey (D-MA). Around 1,400 constituents were present in both the main auditorium and the overflow room where the event was live streamed. I was one of the few who got to ask a question. I asked

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