#MEAction has written an open letter to NIH institute director, Dr. Walter Koroshetz, and CDC division director Dr. Inger Damon to express our lack of confidence in their interagency approach to ME/CFS. Drs. Koroshetz and Damon co-lead the Interagency ME/CFS Working Group, which met last month, and oversee the ME/CFS program activities within their respective
Last week the U.S. National Institutes of Health (NIH) announced it will hold its next ME/CFS Telebriefing on Thursday, Nov. 5 at 11am Eastern Time. #MEAction staff and volunteers worked quickly to draft a letter with detailed questions for NIH in advance of this meeting. You can read the full letter here. We will keep
My name is Robert Jacobs, MD and I am a retired Physician and caregiver for my wife who has had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for more than 9 years. Despite the historical, tourism and quality-of-life allure of this beautiful state, we discovered a paucity of medical care available to patients with ME/CFS, minimal medical
***UPDATE: THIS ACTION IS NOW OVER*** Please contact your SENATORS and urge them to co-sponsor a ME/CFS Awareness Day Resolution NOW! Although the original co-sponsors would like to receive sign-ons as soon as possible and ideally by COB Wed, May 8th, they’re willing to accept co-sponsors up until the passage of the bill, targeted for this
***UPDATE: THIS ACTION IS NOW OVER*** ADVOCACY WEEK LOCAL ACTIONS As many of you know, Advocacy day is April 3rd in DC. Activists will be traveling from around the United States to have meetings with their elected officials to demand recognition and action for people with ME. No matter if you are in DC
The Danish physician, Per Fink, is traveling to the United States to speak about his unscientific and dangerous idea that myalgic encephalomyelitis (ME) is a psychosomatic illness. Per Fink has been invited to speak at a psychosomatic conference at Columbia University in New York City on Saturday, Oct. 20th. Columbia University will reward medical providers who come to hear Per Fink speak with Continuing Education
On September 18th, more than 40 writers, activists, artists, filmmakers, physicians, and scientists came together to write an open letter to Netflix to request that Afflicted be immediately removed from the service. “We are deeply concerned about its unethical treatment of its subjects and its many factual errors and omissions,” states the letter. “Its inclusion
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
A 3-hour Westminster Hall debate on Myalgic Encephalomyelitis (ME) treatment and research has been scheduled for Thursday, 21st June, 1:30-4:30 p.m. We need to encourage as many of our MPs as possible to attend. Contacting your MP has never been easier with this new tool. Simply enter your postcode below to get started. Urge your MP
If you are in the UK, please email your MP asking them to sign Early Day Motion 1247. What is an EDM? Early day motions (EDMs) are motions submitted for debate in the House of Commons for which no day has been fixed. As there is no specific time allocated to EDMs very few
