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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
Study shows immune differences in moderate and severe CFS/ME
New Australian study shows immune difference in moderate and severe patients. It may lead to a test based on these markers.
Let's Make a Million For Invest In ME!
We invite you to join the expanding international community of supporters aiming to raise £1000,000 for Invest in ME Charity’s Biomedical Research Funds by May 2016.
This Video Could Save your Life
The Use of Patient Blogs as a Care Resource Thanks to Greg Crowhurst for his incredibly kind review of
An interview with lead singer of Belle and Sebastian – on life with M.E.
Stuart Murdoch talking openly about his experiences of M.E., Los Angeles, August 2015 “This is a pop band that
Julie Rehmeyer on Science and ME/CFS
Julie Rehmeyer on Science and ME/CFS Julie Rehmeyer, an award-winning science and math writer, was recently interviewed about how
MedPage Today: ME/CFS is Gaining Attention
MedPage Today Focuses on Need for Recognition of ME/CFS and Research Funding MedPage Today, a news site for medical
UK CMRC Welcomes New Sponsors and Prepares for Research Conference
The UK CFS/ME Research Collaborative People with M.E. need better treatment and support. This can only be achieved through
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Bestselling Author's Latest Novel Features Girl with ME/CFS
Bestselling Author John Connolly’s Latest Novel Features Girl with ME/CFS “I know some people with ME, and tried hard
Join Team Solve – Fundraising for ME/CFS Research
It will take more than people with ME/CFS to achieve a world free of ME/CFS. It will take a committed team of many rallying together to effect change – Families, loved ones and friends coming together to make a difference and fund progress. Join Team Solve and help us Solve ME/CFS!
Stage Your Screening of Forgotten Plague!
We’re proud to announce that our new partnership with Tugg is now LIVE! Tugg is a “theatrical-on-demand” platform that
Sign the Petition: Need NIH Funding to Cure M.E. for Millions
AIDS Research took a death sentence and made it a manageable disease. ME-CFS needs the same level of effort
CDC Funding Update: The Importance of Raising Our Voice
A month ago, patient advocate Jennifer Spotila discovered that the U.S. Senate was proposing to zero-out the ME/CFS budget at the
OMF Severely Ill Patient Study Raises $1 Million
The Open Medicine Foundation’s (OMF) Severely Ill Patient Big Data study is now fully funded with $1 million in private research funding thanks to a groundswell of crowdfunding efforts and several generous donations by anonymous donors!
Very little research has been done in the bedbound patients “Hopefully, the more severely ill will have a stronger signal of what’s going wrong.”
Couples Needed for Home-based Research Study on Stress and CFS
The VideoHealth study is currently in its final months of national recruitment for participants and is seeking to enroll eligible patients and their partners. For more information please call 305-355-9200 and press option 5, or email us at [email protected].
Kickstart for Lipkin and Hornig's BIG Microbiome Study
A larger, stronger, even more robust microbial diversity and immunity study is starting at Columbia Center for Infection &
Petition: Get Sweden To Support International ME/CFS Projects
I want Sweden to contribute to international research for ME / CFS – it will also help you! Sweden has about 40 000 people suffering from ME / CFS. I hope that Sweden can contribute to the Open Medicine Foundation and Lipkin / Hornig study.
Contractor: Help CDC Develop ME/CFS Materials from IOM Report
CDC – Collaboration to Develop ME/CFS Educational Materials Based on IOM Report The CDC is requesting quotes from business
Study shows gender differences in CFS
Spanish researchers find differences in men and women with CFS/ME.
Ice Bucket Challenge funds breakthrough
The ALS Ice Bucket Challenge raised more than $100 million, which resulted in a research breakthrough.
Ron Davis on why his NIH proposal was rejected
Ron Davis and Janet Dafoe had to watch as their son Whitney Dafoe deteriorated from an active, world-traveling photographer to