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Next steps: a letter to our community
Hi everyone, I just wanted to take a moment to comment on some of the confusion and concern of
#MEAction Board Member, Pam Laird, Celebrates Fundraising Success
I’ve been privileged to serve on the #MEAction Board these last three years. Though I’ve worked in Silicon Valley
NIH Director: Our Judge and Jury, Prison Guard and Executioner
An anonymous testimony given before the Chronic Fatigue Syndrome Advisory Committee (CFSAC), which met last week for its bi-annual meeting to discuss
Mother Shares Heartbreaking Testimony about Sons with Severe ME
This mother has participated in CFSAC meetings more than 20 times in an effort to get the Health and Human Services to take
U.S. – Center for Solutions for ME/CFS Seeks Applicants for Community Advisory Committee
The Center for Solutions for ME/CFS is seeking applications for the Community Advisory Committee. The deadline is Monday, July
Australia: Mason Foundation Explores Funding ME and CFS Biobank
Most of Australia’s medical research funding for ME and CFS comes from the Mason Foundation, who are currently looking
Westminster Hall debate could be a 'turning of the tide' for ME
Today was a turning of the tide for Myalgic Encephalomyelitis (ME) as 26 MPs attended a Westminster Hall debate on
Read 'Invest in ME's' Parliamentary Briefing
UK charity Invest in ME has written a briefing for the 21 June Westminster Hall debate that calls for
Clarification about our Senate Resolution for ME/CFS
This is a letter to the community from #MEAction, Solve ME/CFS, and MassCFIDS about our recent U.S. congressional work.
US: Watch the CFS Advisory meeting – this Wed. and Thurs.
Representatives from across federal agencies will convene for the next two days – tomorrow, June 20th and June 21st
Two things to do ahead of Thursday’s Parliament debate
A 3-hour Westminster Hall debate on Myalgic Encephalomyelitis (ME) treatment and research has been scheduled for Thursday, 21st June,
U.S. House of Rep. Supports More Funding for NIH
We applaud the U.S. House of Representatives for its support to increase funding for the National Institutes of Health (NIH).
PBS Audience Award: Vote for Unrest
We are thrilled to announce that Unrest is in the running for the 2017-18 Independent Lens Audience Award! It
Read the new parliamentary briefing
Next Thursday, Parliament will hold a 3-hour Westminster Hall debate on Myalgic Encephalomyelitis treatment and research in a monumental
Watch the Stanford Research Update on T-cells
Dr. Mark Davis, Director of the Stanford Institute for Immunity, Transplantation, and Infection, talks about his work with T-cells to
Welcome Jaime Seltzer to the #MEAction Team – Director of Scientific and Medical Outreach
Thanks to your generous support of our Indiegogo campaign, #MEAction is adding a new team member! We’re thrilled to
UK: Urge your MP to attend the 21st June debate on ME
A 3-hour Westminster Hall debate on Myalgic Encephalomyelitis (ME) treatment and research has been scheduled for Thursday, 21st June,
#MEAction Scotland Speaks at Scottish Parliament Petitions Committee – Watch the Video
#MEAction Scotland appeared before the Scottish Parliament Petitions Committee on June 7th to give evidence on its petition to review treatment of
Learn More About the UK Parliamentary Briefing
A key briefing to help parliamentarians understand the issues facing people affected by M.E. has been co-authored by #MEAction
UK MPS Secure Westminster Hall Debate on ME
Mark your calendars! A 3-hour Westminster Hall debate on Myalgic Encephalomyelitis (ME) treatment and research has been scheduled for
Make yourself Heard before U.S. Health Officials – Submit your Comment to CFSAC by June 13
You showed up for #MillionsMissing, now is the time to show up before our federal agencies to demand that
MPs Fight for House of Commons debate on ME in UK
MPs across the parties in the U.K. came together today to argue the case for scheduling a debate about
Victory for ME Disability Claim – U.S. Court Upholds Plaintiff's Lawsuit After Being Denied Disability
Former Washington Post science reporter, Brian Vastag, won a federal lawsuit against Prudential Insurance after the insurance company dropped his short-term disability benefits and denied his bid for long-term ones.
Vastag’s lawyers said that the ruling should make it harder for insurers to deny benefits to similar cases in the future.
OMF Creates Harvard ME/CFS Collaborative Research Center
The Open Medicine Foundation (OMF) is proud to announce that it has funded $1.8 million for the establishment of
OMF Receives $1 million Donation for ME/CFS Research
The Open Medicine Foundation received a $1 million anonymous pledge to escalate Dr. Ron Davis’s systems biology approach with
Scottish Action – Urge your MSP to Support Petition for ME
by Kim Gurav and Susan Cole #MEAction Scotland volunteers have been called before the Scottish Parliament’s Petitions Committee on
How Much Does the UK Dept. of Health Spend on ME?
MP Carol Monaghan (Glasgow North West) had asked the UK Secretary of State for Health and Social Care how much
Read about the Ongoing Science at OMF
The Open Medicine Foundation (OMF) is continuing to fund the ME/CFS Collaborative Research Center at Stanford. These are the projects
“Listened to but were we heard?” The NICE guidelines scoping workshop
On 25th May 2018, NICE held an engagement workshop with stakeholders, looking at the draft scope for the new
U.S. Votes to Track ME/CFS on BRFSS Survey
Back in March, we urged you to take action and inform your state health officials and departments to begin tracking
Thousands sign letter to be delivered to Francis Collins
On May 24th, 2018, we delivered this 580-page letter to Francis Collins, with over 7,000 signatures, photos, and personal comments. We
Victory for #MEAction NY Activists: State Publishes Webpage about ME
The New York State Department of Health has recently established a new webpage about Myalgic Encephalomyelitis (ME) on its
It’s Not “All in My Head”: Living with a Misdiagnosed Disability Five Years on. Volume Three
Read Volume One and Volume Two. Day #5 cont’d. My partner and I hit a point of exhaustion. From
Open Medicine Foundation Announces Harvard Collaborative Research Center
Today, the Open Medicine Foundation announced that it had funded a new ME/CFS Collaborative Research Center at Harvard under
It's Not "All in My Head": Living with a Misdiagnosed Disability Five Years on. Volume Two
“…What literally did not kill me has only made me stronger because giving up was not an option.”
Who is advising the Australian government on ME and CFS research and treatment guidelines?
Australian research is underfunded and the government’s clinical guidelines are outdated so the Australian government’s ME and CFS advisory committee is welcomed. It provides an important opportunity to call on the government to fund biomedical research and to give Australian doctors desperately needed clinical guidance. However, there are mixed perspectives on the committee.
The NIH Plan for ME is Dismal
Occupy M.E. describes the NIH’s current plan to address the crisis of Myalgic Encephalomyelitis as “do a little and
Calling all Patients: Fill Out the Research Survey about PEM
DePaul University is asking the patient population to fill out a survey to better understand the effects of post-exertional
Just Invisible: Medical Access Issues for Homebound/Bedridden People
Australian Ricky Buchanan has written a much-needed report about the issues facing bedbound and homebound people in getting access to medical care.
Inquest Rules Merryn Crofts Died Due to Severe ME
An inquest into the death of Merryn Crofts, 21, concluded that she died from starvation due to severe Myalgic
UK Call to Action: Ask Your MP To Sign EDM 1247!
If you are in the UK, please email your MP asking them to sign Early Day Motion 1247.
U.S. Congress Introduces Resolution for ME
Yesterday, the U.S. Congress introduced a resolution in the Senate to show support for research and medical education for Myalgic Encephalomyelitis (ME).
The Global Impact of #MillionsMissing
The impact of #MillionsMissing 2018 was phenomenal. Protestors took to the streets in 100 countries across the world with
It's not "all in your head": Living with a misdiagnosed disability five years on. Volume One
Sharing a rare but intimate glimpse of life living with a disability, coping with new diagnosis and healing from the damage of old diagnosis.
Sign MEAction's Letter to Francis Collins
Signatures for this letter are now closed. We are planning to deliver it soon and will keep the community
Australian Parliament Recognises Urgent Need for Biomedical Research for ME
The Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) patient and research communities are delighted the Australian parliament officially recognise the urgent need for biomedical research in the field, passing a motion in the Senate to mark International ME and CFS Awareness Day.
How to Protest Virtually with the #MillionsMissing on May 12th
Join the protest from your home. Here are several ways to take action.
OMF shares a Patient’s Reflection on UNREST
This anonymous patient was truly moved by viewing Unrest and is sharing this personal reflection to encourage action.
Sign the Scottish Petition for ME – anyone can sign
Please support our petition! #MEAction Scotland volunteers have submitted a petition to the Scottish Parliament. Anyone from
Why we’re Targeting the NIH for #MillionsMissing
The logic is crystal clear for why the National Institutes of Health (NIH) should make a serious
The Power of the Shoe
Shoes have been a powerful, unifying symbol for #MillionsMissing since the first global protest in 2016. Demonstrations
OMF: A look back on 2017 Highlights
OMF presents a look back on their 2017 highlights in research, outreach, advocacy, recognition, and more.
A song for ME: Blowin’ in the Wind
The following arrangement of Blowin’ in the Wind, with alternative lyrics about the struggles faced by people