Actions Archives

Stop Per Fink from Spreading Misinformation about ME: Sign the Petition

October 9, 2018 3 Comments

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 Oct. 20th. Columbia University will reward medical providers who come to hear Per Fink speak with continuing education credits.

Take the NYU Research Survey about your ME Experience

October 4, 2018 11 Comments

I’m a researcher at NYU interested in the experiences of people with ME/CFS in the U.S.

Sign Norway's Petition: Demand Resignation of Advisory Board Promoting Biopsychosocial Model

September 19, 2018 4 Comments

* Nina E. Steinkopf is a ME patient activist and author of the blog www.melivet.com. The petition is addressed to the Norwegian Ministry of Health and Care Services and below is an English translation – for our international supporters. Everyone is encouraged to sign the petition. The management for the National Advisory Unit on CFS/ME must resign.

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

September 18, 2018 2 Comments

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

How To Protest HHS with #MEAction

September 7, 2018 26 Comments

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,

NIH UPDATE: COLLINS WILL MEET WITH #MEACTION REPRESENTATIVES!

September 6, 2018 14 Comments

The persistent dedication of our community to fight for our lives continues to yield results. We are pleased to announce #MEAction has secured a meeting with Dr. Francis Collins, Director of the National Institutes of Health (NIH), to discuss the demands our community sent to him in a letter this past May. We are working

Stop CDC from Hiring Shoddy Contractor for ME Treatment Guidelines!

August 26, 2018 No Comments

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

Will the FDA Stand in the Way of Your ME Treatment? Take Action now!

August 7, 2018 4 Comments

Suppose there was a substance that could help you, but before you learned about it, or you could find a doctor to prescribe it, the FDA banned it from the market, even though patients have successfully used it for decades. Or suppose there was a treatment that had helped your function improve from 40 percent

Do you use a wheelchair? A team of engineers needs your input.

August 3, 2018 8 Comments

The UC San Diego Smart WheelChair team is asking ME patients to fill out a short google questioner about how ME impacts their mobility and how they can best design a wheelchair accessory that would support your independence. The team of undergraduate engineering students are working to design an affordable, open source, voice activated accessory

Westminster Hall debate could be a 'turning of the tide' for ME

June 21, 2018 35 Comments

Today was a turning of the tide for Myalgic Encephalomyelitis (ME) as 26 MPs attended a Westminster Hall debate on treatment and research for ME. MPs called for the immediate removal of Graded Exercise Therapy (GET) from the NICE guidelines, as patients have consistently reported being harmed from attempting to undergo this treatment. MP Ed Davey

Category: Actions