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,
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:
#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
Carol Head has just been honored by O, Oprah Winfrey’s magazine, as one of fourteen 2017 Health Heroes, “visionaries who are healing bodies, minds, and communities.” “Although we would have preferred a more substantive piece (and inclusion of “myalgic encephalomyelitis,” or ME, as our disease name),” Solve ME/CFS said in a statement yesterday, “we are
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.
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
Australia’s UNSW is trialling an education module treating chronic fatigue syndrome patients with graded exercise therapy and cognitive behaviour therapy (GET/CBT), despite the evidence showing these therapies have no benefit and may cause permanent harm. Sign the petition!
After years of work and hundreds of hours of footage, Jen Brea’s documentary, now entitled Unrest, is ready for its debut. The film will be shown at the Sundance Resort as part of the Sundance Film Festival in January 2017; Brea’s Unrest was selected to premier as one of the Festival’s narrative documentaries. The Sundance
These demands were originally issued for the May 25, 2016 MillionsMissing demonstrations. Minor revisions were made to the demands in November 2016 to reflect community input on the definition, the primer, the name, and the need for improvements in clinical care. You can access and download a pdf of the revised protest demands by clicking
Lenny Jason‘s recent research paper, Mortality in patients with ME and CFS, found patients are significantly at risk for earlier all-cause mortality with the top three causes of death being suicide, cardiovascular problems, and cancer. Jason is well-known for his epidemiology work, with over 80 articles on ME; he was also involved in the creation
