Whitney Dafoe is severely disabled by ME/CFS. His father, Dr. Ron Davis, heads the Genome Technology Center at Stanford University. Dr. Davis is currently studying severely ill patients, including his own son.
The NIH has declined to fund Davis' ME/CFS research, thus far.
" Fewer than one-third of medical school curricula and less than half of medical textbooks include information about ME/CFS." - IOM report, 2015
"Chronic fatigue syndrome" has been a stigmatizing, demeaning and harmful name for a serious disease. The unfortunate name causes many doctors to be skeptical, while friends, family, and spouses are often bewildered, dismissive and sometimes hostile. The trivializing name also casts a pall over medical research.
WAITING FOR SUPERMAN In February, 2015, a Senate staffer was looking for places to make cuts to the CDC budget. The staffer knew nothing about chronic fatigue syndrome, and he arbitrarily slashed the entire research budget to zero. UPDATE: The full amount of the $5.4 million ME/CFS budget has now been restored to the 2016 CDC budget. Thanks, Superman!
"We just needed to put to rest, once and for all, the idea that this is just psychosomatic or that people were making this up, or that they were just lazy,' said Ellen Wright Clayton, a professor of pediatrics and law at Vanderbilt University, who chaired the committee of the Institute of Medicine, the health arm of the National Academy of Sciences." - Washington Post, Feb 10, 2015
Even though ME/CFS has no cure and no effective treatment, the NIH ME/CFS budget estimate for FY 2019 is only 15 million dollars.
Although it is welcome news that the NIH says it is going to improve its research efforts for ME/CFS, many of us will be eager to see if effective action is being taken. Trust but verify.
What is the Pace Trial?
The PACE trial (short for Pacing, graded Activity, and Cognitive behavioral therapy; a randomized Evaluation) is a £5 million study that promotes the view that ME/CFS patients can recover if they gradually increase their physical activity. It is based on a psychogenic theory that the debility of the disease is due to patient's “fear of activity” and subsequent de-conditioning, despite extensive evidence to the contrary.
Why Does the PACE trial Matter?
It matters because the trial was large, expensive, and continues to influence medical practice and policy to the detriment of ME/CFS sufferers.
Did Queen Mary University of London try to withhold trial data from public scrutiny?
How was the PACE Trial data released?
In 2014, Alem Matthees, a ME/CFS hero who is severely ill with ME/CFS, petitioned QMUL to release the PACE trial data under the UK Freedom of Information Act. The petition was denied.
Undeterred, Matthees continued to work for the release of the data. Finally, finally in August 2016, it was ruled that the data must be released for public scrutiny.