The POTS and Beyond conference held in Salt Lake City this past weekend brought together experts in the field to educate physicians and patients on what is known about autonomic dysfunction. The neurology department of the University of Utah School of Medicine partnered with Dysautonomia International and Granger Medical to create this two-day event. The
I’m a researcher at NYU interested in the experiences of people with ME/CFS in the U.S.
The Stanford Genome Technology Center will host the Second Annual Community Symposium on the Molecular Basis of ME/CFS, sponsored by the Open Medicine Foundation, at Stanford University on Saturday, Sept. 29. The following researchers will be presenting: Ronald W. Davis, PhD, Maureen Hanson, PhD, Jonas Bergquist, MD, PhD, Wenzhong Xiao, PhD, Alain Moreau, PhD, Ronald G.
The National Organization for Women (NOW) adopted a resolution for diseases and conditions affecting large numbers of women, including myalgic encephalomyelitis (ME), at its conference this past July. The resolution is now live on NOW’s website, read the full resolution below. The resolution recognizes the need to increase research funding, raise awareness and combat stigma for
When it rains, it pours! There has been so much activity in our US health institutions that it’s easy to lose track. Here’s a handy update to help us all keep it straight. HHS (Health and Human Services) The HHS recently and without warning shut down CFSAC, the Chronic Fatigue Syndrome Advisory Committee. While flawed,
The National Institutes of Health (NIH) has formed a new council focused on how best to advance research into myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). The committee, called the NANDS Council Working Group for ME/CFS Research, will be comprised of scientists, clinicians, representatives from advocacy organizations, and individuals with ME, including a representative from
We will protest the U.S. Department of Health and Human Service virtually, on social media, on Friday, Sept. 14th. We have canceled the in-person protest in Washington, D.C. due to the fact that a hurricane is headed for that area on Thursday. We will reschedule the Washington, D.C. protest for a later date. Our virtual protest on Friday,
If you were on the CFSAC committee, you awoke to the following email in your inbox yesterday morning: Good morning, I’d like to personally extend my gratitude to you for serving as a member of the Chronic Fatigue Syndrome Advisory Committee (CFSAC).Your input as a subject matter expert in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has
PETITION UPDATE (Tuesday, September 11, 2018) The CDC has posted an updated, competitive bid solicitation for the development of federal treatment guidelines for ME. The community outcry, and over 8,000 petition signatures, protesting the previous rigged, sole-source contract got the CDC’s attention. Yet the solicitation is still only open through Thursday, September 13 meaning interested applicants
Who: Cornell Center for Enervating Neuroimmune Disease What: The Center is collecting information from both ME patients and sedentary controls. You will first have a quick phone call to determine eligibility. If eligible, you will meet with a doctor (theirs or yours) to be examined or for blood and urine tests. Then you will complete questionnaires. Finally, you
