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Study proposes new name, definition and biomarkers
Researchers from Australia’s Deakin University have proposed a new name for ME/CFS: Neuro-Inflammatory and Oxidative Fatigue. An Australian university is suggesting a new name to replace ME/CFS. They studied 196 subjects with Chronic Fatigue Syndrome (CDC criteria) and 83 with chronic fatigue and found two distinct groups.
We Succeeded in Removing NIH CBT and GET Advice
NIH has now removed its Medline/ National Library of Medicine (NLM) article promoting CBT and GET for ME/CFS treatment.
Tell the US Labor Department you support new disability insurance rules
The United States Department of Labor is proposing new regulations about certain disability claims. Tell them you support this.
Debunking the myth of the militant minority
In the British media, ME activists who have opposed cognitive behavioral therapy (CBT) and graded exercise therapy (GET) are often been
#MEAction Google Hangout: Canada
This is the sixth of our new series of periodic calls for #MEAction co-founders Jen Brea and Beth Mazur
Support #MEAction this Giving Tuesday
It’s been an amazing year in ME advocacy. In countries all around the world, patients are rising up with a
Complain about NIH's Claims on CBT and GET
Medline Plus, NIH’s web site for patients, just published an article from health news distributor Healthday, based on the recent, discredited U.K. PACE study. The new article states that “cognitive behavioral therapy and graded exercise therapy are among the best available treatments for extended relief” of ME/CFS. Fortunately, if you want to file a complaint about this article, it’s super easy.
Australia: Write to North Sydney by-election candidates
Australia: Write to the North Sydney by-election candidates about ME.
Donate to help SMCI receive a $50K Challenge Donation by Dec 1!
Help SMCI meet our challenge to receive $50,000 by making a Giving Tuesday donation.
Join an #MEAction Group
Announcing #MEAction groups We are thrilled to formally announce a new feature we’ve had running in the background these
Help Simmaron Fund the Rise of ME/CFS Research!
Simmaron Powers Change in 2015! 2015 marks a powerful turning point for ME/CFS patients, and it’s all happening because
#MEAction Google Hangout: Australia
This is the fifth of our new series of periodic calls for #MEAction co-founders Jen Brea and Beth Mazur
Petition: Investigate PACE, remove CBT and GET from treatment guidelines
#MEAction has just launched a major new petition to get the US Department of Health and Human Services (HHS)
New Zealander's: Provide feedback to the Ministry of Health
Background The Ministry of Health (MoH) is seeking feedback on its update to the New Zealand Heath Strategy.
#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