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The Microbiome Hypothesis: Lipkin’s Collaborative, Part 1
Author of the ME/CFS Research Review blog, Simon McGrath, has written an article about Dr W. Ian Lipkin’s theory that the
Netflix Docuseries "Afflicted" is Terrible
Read a response from some of the subjects of Afflicted: “The Truth Behind Netflix’s ‘Afflicted.’” We anxiously awaited the release
Watch Jen Brea's Powerful Award Speech from the 2018 NOW Conference
At the National Organization for Women (NOW) conference held this past July, #MEAction’s co-founder and voluntary executive director, Jennifer Brea,
July 2018 — Research Roundup
July was a big month for scientific research in ME! Many of the most well-known researchers and clinicians had
Amplifying the Voices of Seniors with ME – Join the Group!
By Moderator, Bob Gawron | Contributions by members, Linda Morganstern and Nancy K Wood Several months ago, I approached #MEAction
Enrolling: Bateman-Horne Center Biomarker Study
Help advance biomarker research! The Bateman-Horne Center is actively recruiting patients and healthy controls who are eager to participate by providing samples and information. This is then used in ME/CFS and FM research to discover biomarkers, improve diagnosis, and advance treatment.
Will the FDA Stand in the Way of Your ME Treatment? Take Action now!
Suppose there was a substance that could help you, but before you learned about it, or you could find
Honoring those with Severe ME on Aug. 8
Photo of the Caged Bird who writes about her experiences living with severe ME here. Today, August 8th, marks
Volunteer of the Month: A Builder of Community
We want to honor volunteer Holly L. this month for her dedication to building an engaged, informed community for
Do you use a wheelchair? A team of engineers needs your input.
The UC San Diego Smart WheelChair team is asking ME patients to fill out a short google questioner about
#MEAction UK Activist Speaks at the International Deaf & Disabled People's Solidarity Summit
Article written by Sian Leary and Nathalie Wright | Photo credit: Paula Peters On 22nd July, Deaf and Disabled people
Learn how to Lobby Congress: Read our Toolkit
Since its inception three years ago, the #MEAction Congressional team has worked hard to build relationships with members of
CDC Revises Its Information on ME
Update: #MEAction has incorporated your comments in its draft to the CDC! See what we’ve added from the comments
NICE Guideline for ME: #MEAction UK Responds to Second Draft Scope
The National Institute for Health and Care Excellence (NICE) is in the process of updating its guideline for Myalgic
Building Allies for M.E. at Women’s Rights Conference
The women’s rights community is beginning to pay attention to Myalgic Encephalomyelitis (ME) as one of many diseases in
M.E. Takes Center Stage at the Women’s Health Empowerment Summit
This past May, the Women’s Health Empowerment Summit chose three patients to share testimonies about their illness and Myalgic
Learning about ME at the Dysautonomia Conference
#MEAction sent two representatives, Beth Mazur and Jaime Seltzer, to attend the 2018 Dysautonomia International Conference in Nashville last
Open Letter: 75 International Experts Urge Netherlands to Invest in Biomedical Research for ME
75 clinicians, scientists and other professionals explain to the Dutch Minister of Health what this diseas is, but also is NOT (not a pychological or psychosomatic disease), that there is no robust evidence for CBT/GET nor for the underlying hypothesis and that the only way to achieve much needed progress for patients is biomedical research
The NIH responds to #MEAction, Next Steps
Following the global day of action on May 12, 2018, #MEAction gathered photos and petition signatures from people all
Ron Davis Receives $2.5 Million Grant from NIH
Dr Ron Davis and his team at the Stanford Genome Technology Center have received a large research grant from
Denmark has some recommendations for ME… and they're pretty awful
Article written by Rebecca Hansen, Chairman of the Danish ME Association The Danish Health Authority (SST) released their new treatment recommendations
Pastor Testifies About Wife's ME
Lutheran pastor, Stephen Friedrich, spoke about his wife’s struggle with Myalgic Encephalomyelitis before the Chronic Fatigue Syndrome Advisory Committee (CFSAC)
What next for the NICE guidelines?
Parliament Plays NICE #MEAction UK was thrilled to watch the longest ever UK parliamentary debate about ME on 21st
Volunteer of the Month: a Scottish Trio
This month we want to honor the work of three women with #MEAction Scotland – Emma Shorter, Kim Gurav
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