Read the Latest in ME News and Campaigns
Never miss a beat! Subscribe to our newsletter and select “Daily Digest” to get a summary of the day’s news & actions delivered to your inbox.
Case Study: "Brain Fog" in CFS can be seen in qEEG/Loreta
Marcie Zinn, Mark Zinn, and Leonard Jason of DePaul University published a case study this week that details how qEEGs can
PACE: Objections, Challenges & Beliefs
I am writing this piece to offer Dorothy Bishop & Stephan Lewandowsky some patient perspective on their joint piece in Nature : “Research integrity: Don’t let transparency damage science”. Specifically, I would like to add some context to this line in particular:- “When people object to science because it challenges their beliefs or jeopardizes their interests, they are rarely committed to informed debate.”
James Coyne at Belfast Castle: PACE a “wasteful train wreck of a study”
Professor James Coyne told a packed audience at Belfast Castle in Northern Ireland on Sunday that the PACE trial
Tuller summarizes issues with PACE in Health Affairs
David Tuller has published a new article in the Health Affairs blog that summarizes the issues with the conduct
Response to AHRQ's continued support of PACE
On February 3, 2016, a group of patient organizations and advocates (including #MEAction) sent a followup letter to the
Geocentrism and PACE – both on the wrong side of science
Geocentrism and PACE – both on the wrong side of science Thank you to Ella Peregrine for kindly allowing
Tuller: PACE authors “wrapping themselves in victimhood”
Journalist and public health expert Dr. David Tuller has, on Virology Blog, attacked a recent commentary in Nature that
Call on our ME/CFS charities to support patient calls for release of the PACE data
Tell our charities: QMUL must release PACE data I need your help. The UK Information Commissioner recently ruled that
We All Have CFS, Like It Or Not
I’ve been inspired to write by Lucibee’s recent blogpost about the PACE trial (https://lucibee.wordpress.com/2016/01/27/my-thoughts-about-the-pace-trial/), She raises an important point about how patients can sometimes be received for reporting any sort of improvement from CBT or GET.
NIH Grant Reviewers in 2015
Thank you to Jennifer Spotila for giving us permission to reprint her article and for all of her great investigative work.
Feds Fail First Test of the “New” Chronic Fatigue Syndrome (ME/CFS) Era
The DHHS response is disappointing. The NIH’s continuing reluctance to produce and RFA – the one thing we know will spark interest in ME/CFS – is nothing if not baffling. Francis Collins promises are, at least at this point, ringing hollow.
Solve ME/CFS Initiative Grades HHS on CFSAC Response
Solve ME/CFS Initiative Grades HHS on CFSAC Response The Solve ME/CFS Initiative has created a report card for HHS’
British climbers raise £3,500/$5,000 for ME Research UK
A team of determined British climbers have succeeded in climbing the height of Everest to raise thousands for biomedical ME research. Watch a time-lapse video of this positive & successful fundraising event.
UK study refuses to release data: PACE trial
Large controversial UK study still refusing to release data: latest update on the PACE trial
James Coyne to talk in Belfast on “scandal” of the PACE trial
Talk by James Coyne in February Professor James Coyne of the University of Pennsylvania will be giving a talk
Australian Health Dept answers questions on ME
Most of the $2.4 million in research the Australian government says is for CFS is spent on psychology, exercise or for other conditions such as hepatitis C. No studies funded in a decade.
QMUL reject PACE FOI request from Ron Davis and colleagues
Queen Mary University of London (QMUL), acting on behalf of the authors of the highly controversial PACE trial, has
10,000 signatures for more research funding in the UK!
Calling all British M.E. sufferers & allies, Inspired by our American friends and the progress that has been made over in the States with government funding and new research projects, we think it’s time for patients to put the pressure on the UK parliament. We are asking for an increase in budget to fund bio-medical research as well as the formation of a work group to represent the issues facing our community in government.
Lancet Psychiatry publish Coyne and Laws PACE critique
Lancet Psychiatry have published three letters criticising a paper published in the journal on the long-term follow-up results of
Everest Challenge for ME Research UK
A team of climbers are taking part in a gruelling charity event with the aim of scaling the height of Everest (8,848m) in a single day, raising funds for much-needed research into ME/CFS. As the climbing wall is only 12.5m in height, the team will have to climb it over 708 times to reach their goal and it’s expected to take them between 6 and 9 hours. The Everest Challenge will be a real test of the team’s commitment, strength and endurance.
James Coyne: PLOS One lawyers “squaring off” against PACE authors
Professor James Coyne has provided an update on his request to PLOS One that they enforce their data-sharing policy
Rehmeyer and Tuller: PACE trial didn’t prove graded exercise safe for CFS
Journalists Julie Rehmeyer and Dr. David Tuller have published an analysis concluding that the PACE trial failed to demonstrate
Columbia professor says PACE damaging Lancet’s reputation
Yesterday, Columbia University professor of statistics Andrew Gelman published a warning that The Lancet was risking its reputation by
In-Depth article on ME/CFS Research Plans
MedPage Today’s Update on ME/CFS Research Plans MedPage Today reposted Shannon Firth’s earlier article on ME/CFS in their 2015
David Tuller: 68 unanswered questions about the PACE trial
Yesterday, journalist and public health expert Dr. David Tuller published on Virology Blog a list of 68 questions for
Ron Davis' Plea for his Son's Life
Ron Davis’ Plea for his Son’s Life Ron Davis recently posted a heart-felt plea for more research “before his
Over twenty US organizations and advocates announce new working group
Help us build a powerful, participatory voice for change in Washington #MEAction is thrilled to announce that we are
NIH considering Ampligen and Rituximab trials
Basic research and drug trials under discussion at the NIH In October, the National Institutes of Health (NIH) announced it
NIH To Shift Funding Priorities: Will ME/CFS Benefit?
The NIH is changing how it decides to fund research. Will it benefit ME/CFS?
Davis, Tuller, Racaniello, and Levin issue FOI request for PACE data
Yesterday four scientists, led by world-famous geneticist Professor Ronald Davis, added to the pressure for scientific transparency on the PACE
Tell Congress to Increase ME Funding
Have you always wanted to email your Congressmen/ women about ME/CFS but don’t know what to say? Or maybe you’re too sick to draft a letter? We’ve made it easy! Just go to the listed website and copy and paste the sample letter!
PLOS One posts "notification" of intent to evaluate James Coyne's PACE data request
PLOS One today published a statement that its staff were evaluating Professor James Coyne’s request for data from a
What the CDC needs to know about the $5.4 million funding restoration
In a budget agreement announced early Wednesday morning, funding for the US Centers for Disease Control’s (CDC) ME/CFS program was
“Vexatious”: King’s College London dismisses James Coyne’s request for PLOS One PACE data
Professor James Coyne’s request for the dataset used for a paper about the PACE trial in the journal PLOS
Study shows Epstein-Barr virus can infect human neurons
A new study has found that two human herpesviruses: Epstein-Barr virus (EBV) and Kaposi’s sarcoma-associated herpesvirus (KSHV), previously only proven to
Norwegian researchers ask 'What exactly is M.E.?'
Norwegian researchers say patients with ME have more severe symptoms than those with chronic fatigue syndrome, but better mental health.
Charles Shepherd: It's time for doctors to apologise to ME patients
Study finds evidence of downregulated immune system in ME/CFS patients
Researchers analysed 100 blood samples from the Solve ME/CFS Biobank of patients and results included finding 3 clusters. The cluster of Interleukin-16 (IL-16), IL-7 and VEGF-A was both significantly downregulated and tightly correlated with each other. IL-16 is a pro-inflammatory cytokine and the reduction shown may indicate immunodeficiency. IL-7 is indispensable for the creation and survival of immune cells (T cells, B cells, NK cells). VEGF-A: stimulates new blood vessel and muscle growth.
Announcing MEpedia: a knowledge base for ME science and history
What if we could take all of the information we have learned from all of those years of hundreds of people reading and writing about thousands of news and research articles across all of our forums and blogs and Facebook pages, and create one massive, interlinked, and structured knowledge base?
James Coyne to PLOS One: Don’t let PACE make a mockery of data sharing
Professor James Coyne yesterday posted online his letter to PLOS One complaining about the PACE authors’ failure to provide
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.