Read the Latest in ME News and Campaigns
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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.”
Free Webinar with Dr. Peter Rowe, director of Chronic Fatigue Clinic
Solve ME/CFS Initiative (SMCI)‘s first webinar of the year, “A Clinical Approach to ME/CFS in Adolescents and Young Adults,”
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
NIH funding: What will this mean for ME/CFS research at Columbia's CII?
If the Center for Infection and Immunity (CII) team is successful with its RFA application proposal, this funding would clearly help the institution to become a Collaborative Research Center, and would help to fund the analysis work involved in the Monster study – albeit slowly. If you’ve missed it, this study is not only about microbes and viruses; it was hugely expanded to include immunology, metabolomics, proteomics, genetics and epigentics.
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
Letter to NIH: End the Insult
A person with ME for more than 38 years wrote this pointed letter to the National Institute of Health, calling its leaders to act with urgency and correct their gross neglect of people suffering with ME.
Australia: government refuses to stop funding trial focused on GET/CBT
An Australian university is trialling a program to train health professionals in administering graded exercise therapy and cognitive behavioural therapy to roll it out nationally and internationally, despite the evidence of harm. Here is the response to a petition to ask them to stop.
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.
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
South Africa: Investigative news channel features ME & #MillionsMissing
The South African investigative journalism program Carte Blanche has aired a well-researched segment featuring the struggle of the ME
Living with a Spouse who has ME/CFS – webinar series
The Bateman Horne Center is honored to host a free, two-part discussion panel program: “Living with a Spouse Who has ME/CFS and Fibromyalgia.” Part 1 will feature husbands whose wives are ill and part 2 will feature wives whose husbands are ill in an open discussion about an often difficult subject.
Australian ME/CFS doctor awarded Order of Australia Medal
Well respected Australian doctor, Richard Schloeffel, was amongst those to receive an Order of Australia Medal (OAM) in this year’s Australia Day honours list, for his service to medicine in the field of chronic and infectious disease.
Stanford team announces update on ME/CFS research
A research team at Stanford gave an update yesterday on some of the breakthroughs its team has made in understanding
Is SIRS, CARS, MARS – and now PICS – causing the "CHAOS" in ME/CFS?
Could ME/CFS be the post SIRS ‘immune paralysis’ state of CARS (Compensatory Anti-Inflammatory Response Syndrome)? Or MARS (mixed antagonists response syndrome)?
Host a dinner to fundraise for ME/CFS researchers
“Dining for Dollars” is a fund raising idea from the AIDS era and we hope to spread the idea by posting the results of our own dinner held this past weekend.
U.S.
U.S.: Join us for a training on bird-dogging with Paul Davis, National Advocacy Coordinator for Housing Works on Sunday,
Canada uses “bird-dogging tactics” to force meeting with health minister
Toronto: #MillionsMissing activists attended their federal health minister’s “meet-and-greet” on Jan. 14th to ask the health minister to respond
Congress is home & hosting public meetings
U.S. House and Senate members are home in their districts for the month of February. Many will be holding public
pwME to NIH: People with ME are Being Murdered by Neglect
An American with ME had strong words for the National Institute of Health (NIH): You have stolen 40 years
NIH answers questions about research centers for ME
Want to know more about the research centers and data center being planned for ME/CFS by the National Institute
ME Activist Basics: Bird-Dogging and YOU!
Bird-dog: (verb) search out or pursue with dogged determination. Contact with elected officials at town hall meetings cannot be
Drastic changes to Ampligen clinical trial hurts ME patients – sign the petition to fight it
Patients in the Ampligen clinical trial are asking for community help to protest changes that will force many to stop getting this medicine. Please sign our petition urging Hemispherx to put ME patients first, always.