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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.
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 The Solve ME/CFS Initiative has created a report card for HHS’
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.
Talk by James Coyne in February Professor James Coyne of the University of Pennsylvania will be giving a talk
Queen Mary University of London (QMUL), acting on behalf of the authors of the highly controversial PACE trial, has
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 have published three letters criticising a paper published in the journal on the long-term follow-up results of
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.
Professor James Coyne has provided an update on his request to PLOS One that they enforce their data-sharing policy
Journalists Julie Rehmeyer and Dr. David Tuller have published an analysis concluding that the PACE trial failed to demonstrate
Yesterday, Columbia University professor of statistics Andrew Gelman published a warning that The Lancet was risking its reputation by
Yesterday, journalist and public health expert Dr. David Tuller published on Virology Blog a list of 68 questions for
Help us build a powerful, participatory voice for change in Washington #MEAction is thrilled to announce that we are
The NIH is changing how it decides to fund research. Will it benefit ME/CFS?
Yesterday four scientists, led by world-famous geneticist Professor Ronald Davis, added to the pressure for scientific transparency on the PACE
PLOS One today published a statement that its staff were evaluating Professor James Coyne’s request for data from a
In a budget agreement announced early Wednesday morning, funding for the US Centers for Disease Control’s (CDC) ME/CFS program was
Professor James Coyne’s request for the dataset used for a paper about the PACE trial in the journal PLOS
A new study has found that two human herpesviruses: Epstein-Barr virus (EBV) and Kaposi’s sarcoma-associated herpesvirus (KSHV), previously only proven to
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.
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?
Professor James Coyne yesterday posted online his letter to PLOS One complaining about the PACE authors’ failure to provide
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.
The United States Department of Labor is proposing new regulations about certain disability claims. Tell them you support this.
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 the North Sydney by-election candidates about ME.
Help SMCI meet our challenge to receive $50,000 by making a Giving Tuesday donation.
#MEAction has just launched a major new petition to get the US Department of Health and Human Services (HHS)
Background The Ministry of Health (MoH) is seeking feedback on its update to the New Zealand Heath Strategy.
James Coyne gives a public talk on PACE Trial In a public talk in Edinburgh on Monday, psychologist Professor
Australia’s Senator Ludlam asks Department of Health what they do for people with ME.
Virology Blog today published an open letter from six leading scientists calling on The Lancet to seek an independent
I have been looking at this tantalizing survey by the Autism Research Institute for a few years now. It aggregates
Professor James Coyne today publicly urged the PACE trial authors and Queen Mary University of London to stop fighting