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Tell the NIH about your experience of PEM
Dr. Mark VanNess and Staci Stevens recently visited the National Institutes of Health (NIH) to present their findings on
Madness
We ask for attention and compassion with energy we don’t have. Often this is misunderstood.
Director Collins responds to 55 Congressional Representatives' Letter of Concern
Recently, #MEAction in conjunction with other advocacy organizations and many individual advocates have also successfully lobbied Congressional members to
No more 'should': the aim to stop punishing myself for having ME
Have you ever noticed how so many of us beat ourselves up for having this chronic illness, almost as if it is invisible even to us, even as we feel the pain and exhaustion? While we feel the need to not give up and keep a hold of all we can of our lives, I’m becoming aware that I for one often get this fight tangled up with a lot of damaging self-judgement.
#MillionsMissing Holland protest against social exclusion
Worldwide protest of patients with ME against social exclusion After being ignored for years and being excluded from participation
Increasing Efficacy of the CDC’s ME/CFS Educational Program
INTRODUCTION The Centers for Disease Control (CDC) is revising and creating new educational materials for its Myalgic Encephalomyelitis/Chronic Fatigue
Fiscal Year 2016 Request for Applications Tally
Despite advocates’ expectations, Fiscal Year 2016 ended with no RFAs issued for ME research.
SPEECHES FROM THE FRONT LINES OF #MILLIONSMISSING: TASHA & ZARA
FROM THE FRONT LINES OF #MILLIONSMISSING ROUND 2: SPEECHES BY TASHA AND HER DAUGHTER ZARA (AT NYC PROTEST)
Join the 'Patient uprising from our beds': Melbourne MillionsMissing on 12 October
Melbourne’s MillionsMissing will be on the steps of Parliament House, Spring St, Melbourne, from 1pm to 2pm on Wednesday 12 October 2016.
Attend the IACFS/ME conference this month
Where does rituximab fit in among the treatment options for ME/CFS? What is the US government’s research plan? How
Washington DC Residents Protest Lack of Support for Patients Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
MEDIA ADVISORY FOR: Tuesday, September 27, 2016CONTACT: Anna Zuccaro | [email protected] 4PM: DC Residents Protest Lack of Support for Patients
Seattle Residents Protest Lack of Support for Patients Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
MEDIA ADVISORY FOR: Tuesday, September 27, 2016 CONTACT: Anna Zuccaro | +1-914-523-9145 | [email protected] TUESDAY 12PM: Seattle Residents Protest
SF Bay Area Residents Rally Demanding Support for Patients Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
MEDIA ADVISORY FOR: Tuesday, September 27, 2016 CONTACT: Anna Zuccaro | +1-914-523-9145 | [email protected] TUESDAY 11AM: Bay Area Residents
Pittsburgh Residents Rally Demanding Support for Patients Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
MEDIA ADVISORY FOR: Tuesday, September 27, 2016 CONTACT: Anna Zuccaro | +1-914-523-9145 | [email protected] TUESDAY 11AM: Pittsburgh Residents Rally
NYC Activists Protest Lack of Support for Patients Battling with Myalgic Encephalomyelitis
MEDIA ADVISORY FOR: Tuesday, September 27, 2016 CONTACT: Madison Donzis | [email protected] | (210) 488-6220 TUESDAY 4:30PM: NYC Activists
Michigan Residents Protest Lack of Support for Patients Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
MEDIA ADVISORY FOR: Tuesday, September 27, 2016 CONTACT: Madison Donzis | [email protected] | (210) 488-6220 TUESDAY 12PM: Michigan Residents
Dallas Residents Voice Lack of Support for Patients Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
MEDIA ADVISORY FOR: Tuesday, September 27, 2016 CONTACT: Madison Donzis | [email protected] | (210) 488-6220 TUESDAY 12PM: Dallas Residents
Chicago Residents Protest Lack of Support for Patients Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
MEDIA ADVISORY FOR: Tuesday, September 27, 2016 CONTACT: Madison Donzis | [email protected] | (210) 488-6220 TUESDAY 11:30AM: Chicago Residents
Boston Residents Protest Lack of Support for Patients Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
MEDIA ADVISORY FOR: Tuesday, September 27, 2016 CONTACT: Madison Donzis | [email protected] | (210) 488-6220 TUESDAY 12PM: Boston Residents
Atlanta Residents Rally to Raise Support for Patients Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
MEDIA ADVISORY FOR: Tuesday, September 27, 2016 CONTACT: Madison Donzis | [email protected] | (210) 488-6220 TUESDAY 1PM: Atlanta Residents
Protests Across the UK Highlight the Lack of Support for Patients Suffering from Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
MEDIA ADVISORY FOR: Tuesday, 27 September, 2016 TUESDAY: Protests Across the UK Highlight the Lack of Support for Patients
Thousands Protest in 24 Cities Worldwide Demanding Support for People Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
MEDIA ADVISORY FOR: Tuesday, September 27, 2016 CONTACT: Brett Abrams | +1-516-841-1105 | [email protected] 09/27: Thousands Protest in 24
MillionsMissing/MillonesAusentes, únete a la protesta en español
This is a blog created by spanish-talking pwme to spread the knowledge about ME/CFS and increase activism. Este es un blog sobre SFC/EM en español para visibilizar la enfermedad y aumentar el activismo!
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 [email protected] [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 | [email protected] 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 | [email protected] 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?