Author: Ben HsuBorger

Congress Capitol Building pencil drawing

#MEAction urges Congress to hold NIH accountable

#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

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text: fail

NIH & CDC leadership are failing people with ME/CFS

#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

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National Institutes of Health (NIH) logo on side of building

#MEAction sends letter to NIH ahead of ME/CFS meeting

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

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South Carolina Raises Awareness about ME

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

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Advocacy Week Local Actions

***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

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Per Fink is coming to US this week! Here's 3 actions you can take

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

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Open Letter Demands Removal of Netflix's "Afflicted" – Sign the Petition

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

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Stop CDC from Hiring Shoddy Contractor for ME Treatment Guidelines!

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

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UK: Urge your MP to attend the 21st June debate on ME

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

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