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#MEAction Google Hangout: Ireland
This is the fourth of our new series of periodic calls for #MEAction co-founders Jen Brea and Beth Mazur
James Coyne declares “moral equivalent of war” on PACE
James Coyne gives a public talk on PACE Trial In a public talk in Edinburgh on Monday, psychologist Professor
Poll: Letter to thank NIH for Announcement
November 20th Update: Thanks to all of our members who voted in this poll. A significant minority of our
Call for HHS to Investigate PACE
Call for HHS to Investigate PACE Recently, journalist David Tuller, DrPH, published an investigative report outlining serious concerns with
Aust Senator questions government on lack of action on ME
Australia’s Senator Ludlam asks Department of Health what they do for people with ME.
Scientists demand independent analysis of PACE trial
Virology Blog today published an open letter from six leading scientists calling on The Lancet to seek an independent
Take this preliminary survey on treatment benefits and harms
I have been looking at this tantalizing survey by the Autism Research Institute for a few years now. It aggregates
James Coyne tells PACE authors: Stop fighting data release
Professor James Coyne today publicly urged the PACE trial authors and Queen Mary University of London to stop fighting
Donate to help SOLVE ME/CFS INITIATIVE receive a $50K Challenge Donation by Dec 1!
Help SOLVE ME/CFS INITIATIVE meet our challenge to receive $50K by making a Giving Tuesday donation.
PACE trial's 'sister' study overlooked
In his Virology blog, David Tuller examines results of ‘sister’ to the PACE trial
Join me in Fundraising for SMCI!
I’ve raised $6500 in 24 hours — imagine what we could raise if you all joined in? You don’t have to create any content, or write anything. Just join the team, and share with the link with your network.
Close to collapse: new report highlights shocking lack of social care for people with M.E.
Catalan: Fibro, CFS and MCS patients face new restrictions on medical care
Report from Catalan The Catalan Government Health Department’s new plan for Central Sensitivity Syndrome patients Liga SFC/SSC, September 2015 On
Swedish psychiatrist on how he came to view M.E. as a physical disorder
Prof. Carl-Gerhard Gottfries is a professor of psychiatry. In this video, he explains how he and his colleagues first
Save the Gottfries Clinic
The Gottfries clinic is the leading ME/CFS and fibromyalgia clinic in Sweden. It both treats patients and conducts biomedical
Share this film and join the petition to reform the NICE guidelines
On Friday, 30th October, Change For M.E. Change For Us launched their short film, The Last Great Medical Cover
Letter: Ask HHS to Investigate PACE
Dear #MEAction users, Please find below a letter to HHS (CDC and AHRQ) calling on them to investigate the PACE
Government orders release of PACE trial data
The Information Commissioner’s Office (ICO) has ordered Queen Mary University of London to release anonymized PACE trial data to an unnamed
#MEAction Google Hangout: UK
This is the second of our new series of periodic calls for #MEAction co-founders Jen Brea and Beth Mazur
Prof. Jonathan Edwards: PACE trial is "valueless"
OPINION PACE is valueless for one reason: the combination of lack of blinding of treatments and choice of subjective
Add this PACE petition counter to your website
Use this code to add a PACE petition counter to your blog or website. It links back to the
NIH Funding for ME/CFS extramural research will increase
From Bob and Courtney Miller: We are excited to share news that the NIH has elevated its research approach
NIH announces new clinical study and move to NINDS
Editor’s note – this is an emerging news story. Edits will continue to be made to this page as
Misleading PACE claims should be retracted
Given the weak and flawed methodologies of the PACE trial, which claims that CBT and GET led to the
PACE Trial Controversy Grows
In wake of David Tuller’s investigation, PACE investigators publish follow up study Last week, journalist David Tuller published a
Sign this letter to the Danish Prime Minister for Karina Hansen
Editor’s note: Michael Evison of ME Alliance has written this letter to the Danish prime minister about Karina Hansen’s case and
Send Birthday Cards to Karina Hansen
Editor’s note: Karina Hansen is young Danish woman with severe ME. In February 2013, she was forcibly removed from her
#MEAction Google Hangout (Friday October 30th)
We’d love to start hosting periodic calls to allow #MEAction members to chat informally with co-founders Jen Brea and
Investigative Journalist Exposes PACE Trial
Journalist and public health expert David Tuller completed yesterday the publication of his highly critical investigation into the UK’s £5
Letter to Burwell and Collins Demands Funding Equality
Uniting the ME/CFS community is not easy, but it has never been more important than right now. One thing
Canary in a Coal Mine at Good Pitch New York
Canary in a Coal Mine at Good Pitch New York Dear friends, family and colleagues, This Tuesday, Canary – a documentary
David Tuller Tears Apart PACE Trial
Health scientist and New York Times published journalist David Tuller today launched a damning critique upon the UK’s £5
Canary Live at Good Pitch New York
Canary in a Coal Mine will be one of seven films to take the stage at BRITDOC‘s Good Pitch
Australia: What is the fuss? Make a video for the Medical Research Fund
Maka a video about ME and make a fuss! (Australia)
Muscle defect studied in UK
Patients in the UK’s north east will benefit from muscle abnormality research put into action via hospitals.
CDC Funding Update from SMCI
SMCI Meets with Senate Appropriations Staff The Solve ME/CFS Initiative has posted an
Donate To Help The OMF Raise $33.3K By December 1!
The Open Medicine Foundation has just begun a fundraising campaign to raise $8.3K in donations and have it matched 3:1, which will result in $25K + $8.3 = $33.3K!
Tell Congress to Support Myalgic Encephalomyelitis Funding Equality
In the US? Find your state and sign the petition. Not in the US? Sign the global solidarity petition.
Visionary viral disease treatment needs funding
Imagine a drug that could treat almost any viral disease. We may only be a few years’ away, thanks to Dr Rider at MIT.
Neurology Now writes about CFS
Neurology Now on CFS Neurology Now recently posted an article targeted at neurologists with the headline “Beyond Tired: Is
Crowdsourcing information for a pharmacy M.E. resource
I’m working with a national M.E. charity, Action for M.E., as their Volunteer Pharmacist, providing information about pharmacy services, writing health
UK CMRC conference on October 13 and 14
UK CMRC conference to be livestreamed on 13 and 14 October Parts of this year’s UK CFS/ME Research Collaborative
Push to change ME/CFS NICE guideline
Minutes just released for the 15 July 2015 meeting of the cross-charity Forward-ME group record a discussion with Dr
The Atlantic publishes a nuanced push for public funding
The Tragic Neglect of Chronic Fatigue Syndrome With a surprisingly broad-ranging and detail-rich article by Olga Khazan entitled “The
Vote DAILY For National ME/FM Action Network To Win $100K In Aviva Contest For Research Of ME And FM!
Vote DAILY between October 6-23, 2015 in the Aviva contest to help the National ME/FM Action Network in Canada win up to $100,000 for research of ME and FM.
Poll: Should #MEAction sign this NIH Letter?
Bob and Courtney Miller are writing a letter to Francis Collins, Director of the National Institutes of Health (NIH) and Sylvia
Autoantibodies found in subset of CFS patients
A new German study published in Brain, Behavior, and Immunity by Loebel, et al. has found that Chronic Fatigue Syndrome* may
Give your Patient Opinion (UK, IR & Aus)
Independent organisation Patient Opinion wants to hear feedback on healthcare services from patients in Australia, Ireland and the UK.
Treadmill test shows who Ampligen may help
Hemispherx Biopharma research shows that CFS patients who can perform more than 9 minutes on a treadmill are more likely to benefit from Ampligen.
CFSAC – to be or not to be
CFSAC- Let’s Take Action ME community members were caught off guard when the proposed 2016 Senate appropriations bill zeroed out
Chronic Fatigue Syndrome Advisory Committee (USA) recommendations
USA’s CFS Advisory Committee wants bigger research, aimed at finding diagnostic tests, using Canadian Consensus Criteria and private-public partnerships to find drug treatments. It asks for $250 million annually, estimating ME/CFS costs the US up to $24 billion.
Help Us Put a Face on ME/CFS!
The Solve ME/CFS Initiative has launched a campaign to help increase awareness of —and ultimately research funding for—ME/CFS. The
Hidden Faces of M.E.
UK charity Action for M.E. are this week hosting a social media campaign and its aim is to raise
Validity of Chronic Fatigue Syndrome bolstered by research
Written by Brent Handel Originally published in The Lawyers Weekly June 26 2015 issue, reprinted with permission Chronic fatigue