It's Not "All in My Head": Living with a Misdiagnosed Disability Five Years on. Volume Two
May 22, 2018
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“…What literally did not kill me has only made me stronger because giving up was not an option.”
Author: #MEAction
U.S. Congress Introduces Resolution for ME
May 16, 2018
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Yesterday, the U.S. Congress introduced a resolution in the Senate to show support for research and medical education for Myalgic Encephalomyelitis (ME).
The Global Impact of #MillionsMissing
May 16, 2018
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The impact of #MillionsMissing 2018 was phenomenal. Protestors took to the streets in 100 countries across the world with demonstrations taking place in North America, South America, Europe, the United Kingdom, South Africa and Asia. Along with people taking action from home, there was a total of 300 visibility actions. More than 50 news organizations ran
It's not "all in your head": Living with a misdiagnosed disability five years on. Volume One
May 12, 2018
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Sharing a rare but intimate glimpse of life living with a disability, coping with new diagnosis and healing from the damage of old diagnosis.
Sign MEAction's Letter to Francis Collins
May 11, 2018
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Signatures for this letter are now closed. We are planning to deliver it soon and will keep the community posted on any and all updates. On May 12th, the #MillionsMissing will protest in over 100 cities worldwide, demanding real investment in research funding and clinical education for myalgic encephalomyelitis (ME) from our government. Below is
Sign the Scottish Petition for ME – anyone can sign
May 1, 2018
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Please support our petition! #MEAction Scotland volunteers have submitted a petition to the Scottish Parliament. Anyone from any country can sign! The petition calls on the Scottish Government to undertake a review of the treatment of people with ME in Scotland. The aims of the petition can be summarised as follows: Investment in
Why we’re Targeting the NIH for #MillionsMissing
April 30, 2018
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The logic is crystal clear for why the National Institutes of Health (NIH) should make a serious commitment to funding research for ME/CFS. The disease affects a high proportion of Americans – estimates range from 1 to 2.5 million people; the disease is highly debilitating, leaving 75 percent unable to work and 25-29
NIH reply to my open letter (and a legal question from a peasant)
April 24, 2018
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Samuel Wales, who has had ME for many years, has kindly allowed us to republish his latest blog post, which can be found here. Intro My previous post contains my open letter to Francis Collins. It got a lot of readers. Many were from NIH. But who exactly at NIH is listening? I was hoping
Action Alert: Ask Francis Collins Anything this Friday at 2pm EST
April 18, 2018
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The National Human Genome Research Institute (NHGRI) will launch the National DNA Day Reddit “Ask Me Anything” (AMA) Series on Friday, April 20 at 2pm EST. Genomics experts will answer questions at the Reddit Science community forum, “/r/Science“. A Reddit AMA is an opportunity to ask interesting individuals questions about anything and everything. This AMA
Sharing UNREST through Library Donations
April 10, 2018
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Activism doesn’t always have to take place in government offices or with signs and shouting; it can take place in quiet libraries. Library systems are the target of Cindy Downey’s efforts to make Jen Brea’s documentary Unrest accessible to all. Downey, of British Columbia’s Okanagan Valley, donated copies of Unrest to three provincial library