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Join us in the #isignedfive challenge!
Want a way to raise your voice this #MillionsMissing but don’t know how? Perhaps you’re unable to attend a
US: #MillionsMissing Protest Demands
Overview Ahead of the May 2016 #MillionsMissing protests, members of the US protest steering committee drafted a set of
The PACE Trial Fiasco
This study is the worst kind of science, and noticing flaws does not mean we are sociopaths or psychopaths. Neither does it mean we’re close-minded members of a group that’s only interested in our own views.
Patients’ reanalysis sinks PACE’s “recovery” claims
Patients and statisticians have used the recently released data from the PACE trial to show that cognitive behavioural therapy
A Plea for Decency to White, Chalder & Sharpe
The time for decency in the face of the overwhelming failure of PACE for many has justifiably passed you by, but potential futility aside, I make this appeal regardless. Every day there is a new ME/CFS patient. Today you can spare that patient from harm. You can spare them from being accused of malingering by their own friends and family. You can spare them from wrongful imprisonment in a psychiatric ward. Today you can set ME/CFS research on an expedited path that leads to real treatments and ultimately a cure. End this tragedy now.
Join the MILLIONSMISSING Chicago Protest/Day of Action
The Chicago protest #MillionsMissing will feature talks by Dr. Leonard Jason, Dr. Marcie Zinn, well-known epidemiologists; Carol Head, of
Whether I like it or not
Over the years I discarded several pairs of shoes. I no longer felt comfortable wearing high heels, nor needed
Visual ideas for your #MillionsMissing protest
Have ideas on how to improve this document? Email millionsmissing@meaction.net [pullquote align=”full” cite=”” link=”” color=”” class=”” size=””]“Politics is theater.
Join the NYC #MillionsMissing Protest
The NYC #MillionsMissing Protest has a full agenda and they are excited to announce several major speakers in attendance including local NYC ME/CFS physician (and Chair of the Chronic Fatigue Syndrome Advisory Committee), Dr. Susan Levine. In addition, local physician-scientist Dr. Mady Hornig from the Columbia University Center for Infection and Immunity (and the ME/CFS Microbe Discovery Project) will also be in attendance. NYC will also have several patients and caregivers tell their personal stories. If you plan to attend and would like to share your story at the protest, please contact them. Finally, as opposed to the shoe display used at other locations, NYC will be doing a unique display using balloons and posters.
Sign the UK and Global Petition: It's time to stop GET trials for ME/CFS
After months of hard work from #MEAction, #MEAction Network UK, and many others including advocates, government officials, lawyers, and
Experts, Advocates and Patients Call Release of UK QMUL PACE Data “A Gamechanging Win for People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
FOR IMMEDIATE RELEASE: Monday, September 12, 2016 CONTACT: Brett Abrams | +1-516-841-1105 | brett@unbendablemedia.com Experts, Advocates and Patients Call
QMUL releases the PACE data
Queen Mary University of London (QMUL) has released the PACE data to a patient who requested it under the
Members of Congress Urge NIH Director Francis Collins to Strengthen Biomedical Research into Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
FOR IMMEDIATE RELEASE: Monday, September 12, 2016 CONTACT: Brett Abrams | 516-841-1105 | brett@unbendablemedia.com Members of Congress Urge
Dozens of US representatives support letter to NIH for ME/CFS research
A total of 55 members of Congress have signed on to a letter asking NIH Director Francis Collins: 1)
Bateman Horne Center Announces New, Larger Location
Bateman Horne Center has moved into a new, larger facility; plans to expand staff to accommodate increasing numbers of patients, will increase research enrollment, and is expanding patient and provider education efforts.
Visit the new #MillionsMissing website!
Ever since the #MillionsMissing protests in May, volunteers have been working on a new site design for #MillionsMissing, and
UK: Tribunal Orders Release of Withheld Data
This #MEAction in the UK press release on the PACE trial decision was written by a committed team of
Lancet rejects scientists’ PACE letter
The Lancet has rejected a letter criticising the PACE trial that it invited from a large group of scientists.
Canada: Research Reviewers as Disease Denialists
Press Release Toronto – August 28, 2016 – “This is ludicrous!” writes Dr. Ian Hyams about the Canadian Institute
Help Cure My Husband Please
I have had M.E. for years now, unable to work. My 19 year old daughter is unemployed, pregnant and
Add your voice to the #MillionsMissing Thunderclap!
The #MillionsMissing are using Thunderclap to amplify our message. Between now and September 27, sign up here and promote
Naviaux's metabolism paper is about as big as you think
Robert Naviaux, at researcher at University of California, San Diego, published a landmark paper yesterday on the metabolites of
Join the #MillionsMissing fundraising team!
With the help of our community’s ingenuity, strength, and indomitable spirit, #MEAction has: Spearheaded a petition to release the
Canada: officials turn down grant app because CFS "isn't real"
For many months the Canadian Institutes of Health Research, the Canadian equivalent to the NIH, has advised that: “The
Urgent: Take part in the US Congressional Call to Action
#MEAction reported recently that the #MillionsMissing protests led to a number of meetings with government officials, including a meeting
Sign the e-card for Alem Matthees!
The name of Australian patient Alem Matthees has become familiar in the last few days since a tribunal ruled
AHRQ Agrees: GET useless, CBT ineffective
By Mary Dimmock and Jennie Spotila This is a cross-post originally published in Jennie Spotila’s blog, Occupy ME. In
QMUL “studying” PACE data-release ruling
Queen Mary University of London (QMUL) have issued a statement in response to Tuesday’s tribunal ruling that they must
Tribunal orders release of PACE data
A tribunal panel has ordered Queen Mary University of London (QMUL) to release anonymised data from the PACE trial
#MEAction RFI Poll Report (Part 3 of 3)
This is the third article in our series on the #MEAction RFI polling data. Click here for Part I
Empty shoes
A few years after getting ill, I discovered that I can write interesting stories about things that happen inside or close to my home. For instance about birds or cats visiting our garden (preferably not at the same time), books, music or even what we had for dinner. This time it is about my shoes, my empty shoes. Who needs shoes while lying on the sofa, anyway?
#MEAction RFI Poll Report (Part 2 of 3)
This is the second part of the RFI Poll Report. To see the Part 1, click here. The Need
The UK ME/CFS biobank paves the way for bigger and better research
On ME Awareness day this year, 12th May, the London School of Hygiene and Tropical Medicine (LSHTM) opened the
Help fund CII’s ME/CFS Monster Study: Microbes, Immunity, & Complex Data
Columbia University – Center for Infection and Immunity has seriously upped the ante on the initial microbe discovery project in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Their impressive, rigorous new study could point the way to diagnostic tests, and even treatments – but first they need the funds to complete the work.
Rehmeyer makes statisticians’ “jaws drop” over PACE
Science writer Julie Rehmeyer presented a critique of the PACE trial to North America’s largest gathering of statisticians in
Take Action on Severe ME Day
Today, August 8th, is Severe ME day. Today is a day of remembrance, when we think of those whom
#MEAction RFI Poll Report (Part 1 of 3)
First of all, thank you so much to everyone who responded to the #MEAction survey to make our response
#MillionsMissing Activists Meet with US Assistant Secretary of Health DeSalvo
As reported earlier this week, Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock met with Dr.
Introducing Blue Ribbon Fellow: Kelly Gaunt
The Blue Ribbon Foundation, the non-profit behind the documentary Forgotten Plague, has an educational and research agenda. In addition to
Global: RSVP for #MillionsMissing around the world!
Want to get involved, but aren’t sure how to proceed? Here is a living document you can use to
Quick Update: #MillionsMissing Meeting with Dr. DeSalvo
Last week, MEAction announced that Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock would be meeting
SMCI Engaged with NIH Officials to Further Appropriate ME/CFS Funding
On May 24, 2016, the National Institutes of Health (NIH) released the first ever Request for Information (RFI) regarding ME/CFS, requesting submissions addressing new research strategies for the disease. Solve ME/CFS Initiative (SMCI) submitted a unique and pointed response to this RFI in the form of an imitation funding announcement.
Give your feedback on the #MEAction USA protest demands!
Note: the deadline has been extended until next Friday, August 12! We are soliciting feedback from the entire community
Blue Ribbon Foundation: An interview with Ryan Prior
Ryan Prior first made waves with his article in USA Today about his experience with ME/CFS that was shared
Watch Free Livestream – Tools for Managing ME/CFS
Wednesday, August 3rd, 7pm Mountain – Free Livestream. Lucinda Bateman MD, Founder and Chief Medical Officer of the Bateman Horne Center, will present methods used at the BHC to partner with patients and help them achieve the best possible function and symptom reduction.
#MillionsMissing US Protesters to Meet With DeSalvo at HHS
A meeting with Karen B. DeSalvo, the Acting Assistant Secretary for Health at the US Health and Human Services
In Memory of Tom Jarrett
I met Tom Jarrett once, and I remember him through an empty chair.
Our losses in the ME community
It’s been a devastating summer for the ME community. We have lost Jodi Bassett, Louise Ramage, Tink Bastian, and
ME in Poland: Help me raise awareness & funding all across the EU
Hi, I’m Mike Harley from the UK, and for the last 18 months I’ve been raising awareness and funds
Introducing Blue Ribbon Fellow: Kristina Gemayel
The Blue Ribbon Foundation, the non-profit behind the documentary Forgotten Plague, has an educational and research agenda. In addition to
Introducing the Seed Grant Ramsay Award Program
The Solve ME/CFS Initiative (SMCI) is now accepting applications for the Ramsay Award Program in basic, preclinical, clinical, and epidemiology research. This competitive grant award is open to scientists and researchers at any career stage who are interested in studying myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS).
#MEAction Policy Change: ME, not ME/CFS
The staff of #MEAction, who run the communications platform that is our website, social media channels, and email list,
US: Attend the #MillionsMissing USA call this Sunday!
This Sunday at 4pm ET, US organizers for the September #MillionsMissing protests will be meeting together to plan, mobilize,
Contribute clips to L.A.'s #MillionsMissing Video
Last October, I released the short documentary The Last Great Medical Cover Up to a widely receptive audience. Now,