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Tag: Chronic Fatigue Syndrome

Congress delays vote on American Health Care plan – Act now

March 22, 2017 1 Comment

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

March 17, 2017 8 Comments

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!

March 7, 2017 2 Comments

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.

March 1, 2017 No Comments

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

February 28, 2017 No Comments

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

February 26, 2017 16 Comments

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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Stanford team announces update on ME/CFS research

February 22, 2017 48 Comments

A research team at Stanford gave an update yesterday on some of the breakthroughs its team has made in understanding the metabolic cycles that are not working properly in people with ME/CFS that might be at the heart of the disease. Ronald W. Davis, PhD, made the announcement via YouTube. Davis directs the CFS Research Center

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Canada uses “bird-dogging tactics” to force meeting with health minister

February 8, 2017 No Comments

Toronto: #MillionsMissing activists attended their federal health minister’s “meet-and-greet” on Jan. 14th to ask the health minister to respond publicly to their request that she announce Myalgic Encephalomyelitis (ME) is a biological – and not psychological – illness. This tactic to pin down an official with a specific question in a public venue is called

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