Read the Latest in ME News and Campaigns
Never miss a beat! Subscribe to our newsletter and select “Daily Digest” to get a summary of the day’s news & actions delivered to your inbox.
NICE 2017 response
10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) (2007) NICE guideline CG53 Stakeholder consultation comments form
Jennie Spotila: NIH's management of conflict of interest
EDITOR’S NOTE: This reporting is written by Jennie Spotila Next week, the NIH will convene a peer review panel
Action for M.E announces research
UK charity Action for M.E has announced that they are funding two new research studies, totalling £42,000
Troubled by NICE guidelines? Three easy ways you can help
When you go to the doctor, you expect treatment to help, not harm you. But the NICE (NHS) guidelines
Write to Your MP in 5 Minutes about the ME/CFS NICE Guidelines
The NHS’ NICE guidelines are badly out of date, and only offer two main treatments: Graded Exercise Therapy
Trifecta for ME awareness in Knoxville, Tennessee
Trifecta in Knoxville, Tennessee In an example of Knoxville leading the way for Tennessee, Mayor Madeline Rogero and the
ACTIVIST TEACH IN: THINK GLOBAL ACT LOCAL (Sat. July 8)
The ME community can greatly benefit by adopting a local philosophy to activism.
Tuller on PACE Investigation Plans: Not Beholden to Anyone
#MEAction sat down with David Tuller recently for a wide-ranging discussion about the crowdfunding effort to help him continue his
Voices from Sacramento: Janet Dafoe and Ashley Haugen
Some of you may know Dr. Janet Dafoe and her daughter Ashley Haugen through their tireless advocacy work for ME. Dr. Dafoe’s son
Passionate Pragmatist: Carol Head and the Fight for ME/CFS Equality: The SMCI Pt. I
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
New York State Health Commissioner Sends Letter to Physicians about ME
On Friday, May 26th, New York State (NYS) Health Commissioner Dr. Howard Zucker emailed a letter regarding Myalgic Encephalomyelitis
Thank Senator Markey for Sponsoring the Congressional ME Briefing
Back in February 2017, Senator Ed Markey (D-MA) publicly announced at a packed town hall meeting that he would
City Proclamation for ME: How-To Guide and Case Study
Timbre Livesay and Mary Dimmock contributed to this article. This is an outline of the steps a California ME
Proclaim it Loud: States Issue Resolutions for ME
Government moves slow. Any action requires lengthy processes – all of the checks and balances intended to create better,
State Resolution for ME: How-to Guide and Case Study
Rivka Solomon and Mary Dimmock contributed to this article This document includes the steps ME advocates are taking to get
Julie Rehmeyer’s memoir is out. Purchase her book today!
“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.
CA Senate will Vote on Resolution for ME/CFS Thursday – Call your Senator!
California – A resolution to proclaim May as Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Awareness (ME/CFS) Month will go before
Meet the Millions Missing – Protest to Raise Awareness of ME in Scotland
Press Release Details of the Event Millions Missing Edinburgh protest is being held from 1200-1400 on Friday 12th May
Show your Solidarity with the #MillionsMissing on May 12th – Protest Virtually
The #MillionsMissing are taking to the streets in 17 cities across the world on Friday, May 12th to once
#MillionsMissing Will Take to the Streets on May 12th – Join Them!
The #MillionsMissing are taking to the streets in 17 cities across the world on Friday, May 12th to once
#BedFest is almost here – Join the call Saturday!
#BedFest is an international art, performance and music festival created by people with Myalgic Encephalomyelitis
Contact your local journalist about #BedFest
Invite a journalist to cover the story of #BedFest in which artists with Myalgic Encephalomyelitis from all over the world have
Netherlands: Artists to showcase their work to raise awareness for ME
Anil van der Zee, 38, is a former professional ballet dancer in Amsterdam. In 2007, he contracted a viral
Show your Face to the World: #BelieveME
When you see a media representation of someone suffering with Myalgic Encephalomyelitis (also called Chronic Fatigue Syndrome), do you
Teach-In: Non-Violent Direct Action
If you missed the teach-in last week on Non-Violent Direct Action with Terri Wilder and Alexis Danzig, check out the webinar here.
Eleven Years with Severe ME – a Young Woman Writes Her Story
Jessica Taylor-Bearman has written a book called “A Girl Behind Dark Glasses” about her “forgotten years” of having severe
The Sleepy Girl Guide to Social Security Disability (U.S.)
Renegade disability guide for Myalgic Encephalomyelitis
Webinar: Dr. Levine and Montoya to discuss developments in ME/CFS research
On Thursday, April 20, Solve ME/CFS Initiative (SMCI)‘s research webinar series will be a double feature with Dr. Susan Levine
The ME/CFS Biomarker Rollercoaster
Biomarkers are a holy grail for ME/CFS because they have the potential to help diagnose disease, track disease progression
Thirty U.S. House Reps Show Support for Appropriation Language
Thirty U.S. House representatives signed a letter last week urging their colleagues on the House Appropriations Committee to attach language to its report on the fiscal year 2018 budget that encourages the NIH, CDC and HHS to accelerate and enhance its work in research and education for ME/CFS.
Australian scientists publish study showing potential biomarker for ME
Scientists in Canberra and Melbourne have just published a study claiming to have found that activin B is a biomarker for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
Participants with ME/CFS were recruited using the Canadian Consensus Criteria.
Impact of proposed NIH and CDC cuts on ME Research
How would the proposed NIH and CDC Budget Cuts affect ME research? News organizations recently reported that President Donald
Join the Teach-In on Non-Violent Direct Action
Join us for a presentation and discussion on non-violent direct action with Alexis Danzig* and Terri Wilder on Sunday,
Global Call-to-Action: Help secure the World Health Organisation's Classification of ME & CFS
Urgent call to action! We need all hands on deck for a simple, but important task! The World Health Organisation (WHO) is reviewing its International Classification of Disease (ICD) for its upcoming 11th edition (ICD-11). There has been enormous concern about what was going to happen to how ME & CFS are classified in the new edition. It’s crucial that we take action now!
Engaging People with ME as Partners in the CRCs
The National Institute of Health’s RFA for ME/CFS Collaborative Research Centers breaks new ground. For the first time, the
Musician with ME produces EP from her bed
#MEAction is working with musician Kaeley Pruitt-Hamm to re-release her music video, “Believe Her,” to showcase the broader face
Three ways to help Unrest change the story
1) Sign up Sign-up to receive Unrest email updates, so you know when the film is coming to a
Australian government seeking expert advice on ME and CFS research grants
Australian Senator Scott Ludlam asked about the progress of proposals to research ME and CFS and what can be done to educate GPs to prevent harmful treatments.
#MEAction and Solve ME/CFS Gear Up for Major Congressional Push
#MEAction and Solve ME/CFS Initiative are gearing up for a major congressional action for ME/CFS in Washington, D.C. from
URGENT Congressional Action: Ask your House Rep. to sign letter for ME
URGENT Congressional Action! Ask your House representative to sign a letter that inserts favorable language for ME into the House
Support Tom's London Marathon campaign for ME Research U.K.
On 23rd April, Tom Whittingham is running the London Marathon for ME Research UK.
Watch and share his fundraising and awareness video.
#MEAction plans virtual concert for May 6th: Submit your Art
Whether you are a musician, poet or puppeteer, expressing yourself through a body devastated by Myalgic Encephalomyelitis (ME) or
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
Australia University will Study Effects of Xbox on Physical Activity in ME/CFS Patients
The University of South Australia will begin a research study that looks at how active video gaming can increase physical activity in adults with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.
The study has no set research criteria, despite studies that show 2 out of 5 patients are misdiagnosed with CFS/ME in Australia.
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
Donate Your Brain to Find a Cure for ME/CFS
One of the best ways to advance research toward finding answers about neurologic disorders is through post-mortem brain donation
"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
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
Julie Rehmeyer: Hope and Despair in Through the Shadowlands
Recently, #MEAction sat down with Julie Rehmeyer to discuss her new book Through the Shadowlands, her op-ed in the
The Cut
Are you prepared for an 18% reduction in ME spending?
I’m not. For one thing, the first year of funding for the new Collaborative Research Centers is set aside in this year’s budget. But all bets are off going forward. Like many other RFAs, the one for ME Centers explicitly states, “Future year amounts will depend on annual appropriations.” So it is possible that future years of funding could be cut or eliminated.
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.
Calcium channel ion defects: research from Australia’s Griffith Uni.
Researchers from Queensland’s Griffith University recently identified a dysfunctional cell receptor in the immune system of people with Chronic Fatigue Syndrome (CFS).
Fifteen people meeting the Fukuda criteria for CFS were studied, against 25 controls. Considering the small size of the study, the results cannot be considered definitive.
Europe gears up for its third #MillionsMissing Day of Action
Europe is gearing up for its third #MillionsMissing Day of Action set for May 12th, which is the international
Video: How to protect American healthcare
Housing Works is mobilizing people who want to fight for health care. Housing Works provided this webinar last month on how to protect and improve healthcare in the U.S. using a tactic called “bird-dogging.”