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Solve ME/CFS had a conversation with Vicky Whittemore of the US National Institutes of Health today regarding some pressing issues,
What is the role of outrage in activism? “Anger is justified but, anger can be used against you. Anger can be misplaced or anger can be the flame that fuels the kind of passion that brings about great change.”
Over the weekend we wrote to NIH to share our article about Brian Walitt, along with comments from the
Open letter to Francis Collins, director of NIH, concerning myalgic encephalomyelitis Dear Francis Collins: The following happened since I
The US National Institutes of Health (NIH) has announced a $246,000 grant to study the use of an oral
Brian Walitt is the lead clinical investigator for the NIH’s new intramural ME/CFS study. His appointment has raised serious
Jennie Spotila Reports on NIH ME/CFS Spending in 2015 Jennie Spotila has written another detailed analysis on NIH spending on
At Tuesday’s CDC Grand Rounds Wilhelmina Jenkins, a long-time ME/CFS advocate, asked Dr. Avindra Nath, the PI of the
Update: The video of Dr Nath’s talk is now available on youtube. Dr Avindra Nath, Chief of the Section of Infections
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath’s two-part blog. Here’s
A look at what you achieved by asking charities to call on the anonymized PACE trial data to be released, and what this means going forward.
NINDS Director confirms PEM and CCC required for NIH post-infectious ME/CFS study.
There are thousands of people with M.E. (Myalgic Encephalomyelitis) in Ireland. At the very best, we receive only symptom
Running on the idea that visual representations of life with M.E. can – as accurately as possible – portray the depth, the range, the severity and the unpredictability of the condition, I am pleased to say that I am currently embarking on Change For M.E. Change For Us’ next visual project….
Australian senator asks medical research council about ‘remarkably small amount of funding since 2000’ and are they funding GET or CBT .
An international group of 36 scientists and clinicians have added their names to an open letter that was sent
Editor’s note: This is a clarification on the NIH’s earlier, accidental release of the intramural study protocol, which listed
Recently, the US National Institutes of Health (NIH) announced its protocol for a new intramural study examining post-infectious fatigue.
Marcie Zinn, Mark Zinn, and Leonard Jason of DePaul University published a case study this week that details how qEEGs can
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.”
Professor James Coyne told a packed audience at Belfast Castle in Northern Ireland on Sunday that the PACE trial
David Tuller has published a new article in the Health Affairs blog that summarizes the issues with the conduct
Geocentrism and PACE – both on the wrong side of science Thank you to Ella Peregrine for kindly allowing
Journalist and public health expert Dr. David Tuller has, on Virology Blog, attacked a recent commentary in Nature that
Tell our charities: QMUL must release PACE data I need your help. The UK Information Commissioner recently ruled that
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