Send TGIF Letters to Francis Collins
January 10, 2017
6 Comments
Friday Letters to Francis Collins
Tag: research
Dimmock, Mirin & Jason: Estimating disease-burden in the US
January 7, 2017
1 Comment
Yesterday, Mary Dimmock, Arthur Mirin and Leonard Jason published a hallmark study in disease burden in myalgic encephalomyelitis. Why is funding so low? Funding for ME/CFS is arguably the lowest per patient for any major disease in the United States, averaging to about $5 per patient per year. Compare this to multiple sclerosis, an illness
Fluge, Mella, and Armstrong: more support for disordered metabolism in ME patients
December 23, 2016
36 Comments
One of the frequent complaints of patients, researchers, and policymakers about ME research is that the findings are scattered, and the studies, small. One group will discover X is elevated in 20 ME patients, only to find that when the test is done on another 13 patients two years down the line, they don’t show
Canada: Find CIHR qualified grant reviewers!
December 19, 2016
1 Comment
When a grant proposal is submitted, a panel of experts will examine it for merit before making a final decision. But what happens when those ‘experts’ deny the very existence of the disease they purport to study? Memorably, a recent grant proposal was submitted to Canada’s CIHR (Canadian Institutes of Health Research) to study ME/CFS,
The PACE trial: Where “recovery” doesn’t mean getting your health back
December 14, 2016
13 Comments
Do people really recover as a result of CBT and graded exercise? Sadly not, says a new analysis of PACE People with ME/CFS dream of recovery — of getting their health and lives back. So the results published by the PACE trial, showing that 22% of participants recovered after just 12 months of CBT or
Recent Tryptase Study Yields Potential ME/CFS Insight
December 14, 2016
1 Comment
From the Solve ME/CFS Initiative: We recently highlighted a paper published online on October 17, 2016 (doi: 10.1038/ng.3696) the journal Nature Genetics, one of the most rigorous publications in the field of genetics with tantalizing findings. The paper, titled “Elevated basal serum tryptase identifies a multisystem disorder associated with increased TPSAB1 copy number,” had two key features that could be potentially relevant to ME/CFS:
Dr VanElzakker: two new ME/CFS studies at Harvard
December 12, 2016
5 Comments
#MEAction recently interviewed Dr. Michael VanElzakker regarding two, new studies on ME/CFS. The first aims to discover evidence of increased activity where the sensory vagus nerve enters the brainstem – a subtle effect that requires some intricate scans. In order to measure the activity in the vagus nerve, Dr. VanElzakker will use a scanner that
New study on CFS/ME in adolescents in Spain: We come in PACE
December 10, 2016
1 Comment
This is the “new” studie some doctors are trying to move around Spain with the recomendations of using CBT and GET in patients of CFS at the age range of 12-17.
#SockItToMECFS with BHC's new fundraising challenge!
December 9, 2016
2 Comments
Bateman Horne Center launches the #SockItToMECFS Challenge. Wear your wildest and wackiest socks to raise awareness and funds for advancing ME/CFS diagnosis and care. Challenge your friends to do the same.
Ramsay Award Winners and Webinar with Dr. Zaher Nahle
December 9, 2016
No Comments
Do you have questions about ME/CFS research? Two weeks from today, the last webinar of this year will be held on December 15th with Zaher Nahle, PhD, MPA, vice president for research and scientific programs at Solve ME/CFS Initiative. Send your questions about upcoming research programs to [email protected] To sign up for the webinar visit: https://attendee.gotowebinar.com/register/2743000415077341956