Over 7K Sign #MEAction’s Response to Flawed CDC Review
August 16, 2021
1 Comment
Over 7K sign #MEAction’s response to CDC
Author: Ben HsuBorger
Sign on to #MEAction’s response to flawed CDC review
August 2, 2021
14 Comments
MEAction Response to CDC #MEAction has released a draft response to the CDC’s flawed systematic evidence review on ME/CFS treatments. Sign our form by August 15, 2021 to have your name added to #MEAction’s response before we formally submit it as a public comment on August 16. We need to demonstrate strong community opposition in
CDC releases post-COVID guidance: 4 takeaways for ME/CFS
June 16, 2021
3 Comments
The U.S. Centers for Disease Control and Prevention (CDC) has published interim guidance for evaluating and caring for patients with post-COVID conditions.* The CDC will present this guidance to clinicians on a public COCA Call on Thursday, June 17th from 2:00 PM – 3:00 PM ET. This guidance deserves a detailed review of what has
CDC releases flawed review of ME/CFS treatments for public comment
June 4, 2021
18 Comments
On May 16th the U.S. Centers for Disease Control and Prevention (CDC) published a notice of request for public comments on its systematic review draft report for diagnosis and treatment of ME/CFS which will remain open until August 16, 2021. You might not realize it from the above description, but this is the latest milestone
#MEAction urges Congress to hold NIH accountable
May 21, 2021
5 Comments
#MEAction has sent a letter to the Congressional House Subcommittee on Health (Energy & Commerce Committee), following their recent congressional hearing on Long COVID. Our letter urges Congress to hold the National Institutes of Health (NIH) accountable for expediting treatments to people with ME/CFS and Long COVID. To make this happen, we urge Congress to
NIH & CDC leadership are failing people with ME/CFS
March 30, 2021
1 Comment
#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
#MEAction sends letter to NIH ahead of ME/CFS meeting
November 4, 2020
No Comments
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
South Carolina Raises Awareness about ME
May 7, 2019
No Comments
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
Urgent – Contact Your Senators Now to Co-sponsor the ME/CFS Awareness Day Resolution
May 7, 2019
No Comments
***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
Advocacy Week Local Actions
April 1, 2019
No Comments
***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