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.
Thank you to Jennifer Spotila for giving us permission to reprint her article and for all of her great investigative work. The original post can be found on her blog at http://www.occupycfs.com/. NIH: Who Reviewed Grants in 2015 In order to get NIH funding, a researcher has to succeed in several levels of application review. A persistent controversy
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’ response to the recommendations made by the Chronic Fatigue Syndrome Advisory Committee (CFSAC) after its August meeting. The grades the organization gave on the HHS response to the 13 CFSAC recommendations range from A- (one) to F (four).
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 entitled “The scandal of the £5 million UK PACE trial for ME: what can be done?” to two separate audiences in Belfast, Northern Ireland, in February. One talk is directed specifically at professionals, including Members of
Queen Mary University of London (QMUL), acting on behalf of the authors of the highly controversial PACE trial, has rejected a request made by a group of scientists for raw, anonymised data from the trial. The group was led by world-famous geneticist Professor Ron Davis of Stanford University, whose son, Whitney Dafoe, is gravely ill
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 the PACE trial. A response from the study authors was also published. The paper, published in October, showed little difference in self-rated fatigue and physical function between the four treatment arms and thus no benefit 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.
