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With the excitement and attention around the theatrical premiere of ‘Unrest’ in NYC this month now is the time
UPDATE On 20th September, NICE overturned the original proposal and announced it would review its guideline on ME. This
FOR IMMEDIATE RELEASE: 21/09/17 CONTACT: [email protected] #MEAction Rejects the Findings of the SMILE Trial of The Lightning Process for Chronic
On September 8th, Nevada’s full Congressional Delegation sent a letter to Director Collins of the National Institutes of Health urging him to “strengthen and accelerate” its work on ME/CFS.
On Sept. 7, the ME/CFS community breathed a sigh of relief as the Senate Appropriations Committee recommended restoring the $5.4 million Chronic Fatigue Syndrome program under the CDC.
MP’s are urging NICE to review Guideline on ME
During the initial years of having Myalgic Encephalomyelitis (ME), it is common to watch all your interpersonal ties slowly dissolve. Being in my early 20s, those around me craved excitement, adventure, and new experiences. Those things I desired too, but little of which I could do or offer in my current state of health.
If you are hosting a screening of Unrest in your community, you will want to reach out to your
Let us know if you need help recovering from Hurricanes Harvey & Irma. We are planning to share the
This story won’t be particularly unique or shocking to anyone living with ME. Every single one of us has a plethora of stories like this, and far worse than this. It has happened so many times over the last 11 years. What shocks me is the degree to which it still occurs and manages to affect me, no matter how much time I spend trying to advocate for ME.
Severe ME patients publish paper questioning central findings of Dutch CBT/GET trial
#BedFest was quite the occasion. People appeared in PJ’s, crumpled t-shirts, crochet vests, keen to address the wider world; people whose voices are seldom heard, called together by #MEAction and its volunteers to share music, art, photography and multifarious creativity and raise ME-Awareness. We didn’t have to leave the house…
Influential scientific researchers in the ME/CFS community will come together this Saturday, Aug. 12 for a one-day community symposium
The Solve ME/CFS Initiative is disappointed to report that the projected estimates for FY 17 are being reported at lower numbers than expected.
Last week, the House Appropriations Subcommittee on Labor-HHS zeroed out the $5.4 million line item for Chronic Fatigue Syndrome at the CDC….again. Tell your members of congress to restore the funding for ME/CFS for next year’s budget. We cannot abandon the progress we’ve made so far!
UPDATE: A recording of this community call can be found here. Join us for our next activist teach-in with
EDITOR’S NOTE: This reporting is written by Jennie Spotila Next week, the NIH will convene a peer review panel
When you go to the doctor, you expect treatment to help, not harm you. But the NICE (NHS) guidelines
The NHS’ NICE guidelines are badly out of date, and only offer two main treatments: Graded Exercise Therapy
The ME community can greatly benefit by adopting a local philosophy to activism.
#MEAction sat down with David Tuller recently for a wide-ranging discussion about the crowdfunding effort to help him continue his
Some of you may know Dr. Janet Dafoe and her daughter Ashley Haugen through their tireless advocacy work for ME. Dr. Dafoe’s son
One of my deeply held personal values is that ALL people must be treated respectfully…I have found that respectful, highly knowledgeable, forceful advocacy language that expresses the desperate needs of our community is the most effective. But please do not mistake my professional, respectful demeanor as anything less than a cover for my righteous indignation and outrage at the inhumanity of our community’s treatment” Carol Head
On Friday, May 26th, New York State (NYS) Health Commissioner Dr. Howard Zucker emailed a letter regarding Myalgic Encephalomyelitis
Back in February 2017, Senator Ed Markey (D-MA) publicly announced at a packed town hall meeting that he would
Timbre Livesay and Mary Dimmock contributed to this article. This is an outline of the steps a California ME
Rivka Solomon and Mary Dimmock contributed to this article This document includes the steps ME advocates are taking to get
“I read an early version of Through the Shadowlands while I was driving around the country, tent in my rental car, terrified that something inexplicable was wrong with me, convinced that I was losing my mind. Julie Rehmeyer’s book showed me that I wasn’t.
California – A resolution to proclaim May as Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Awareness (ME/CFS) Month will go before
Press Release Details of the Event Millions Missing Edinburgh protest is being held from 1200-1400 on Friday 12th May