Sign MEAction's Letter to Francis Collins

Signatures for this letter are now closed. We are planning to deliver it soon and will keep the community posted on any and all updates.
On May 12th, the #MillionsMissing will protest in over 100 cities worldwide, demanding real investment in research funding and clinical education for myalgic encephalomyelitis (ME) from our government. Below is a plan for rigorous, immediate action from the US National Institutes of Health. We are asking everyone to sign –patients, caregivers, allies, researchers, clinicians – no matter where you may live.
For decades, the NIH has neglected the care of people with ME.  Now, there is agreement for the need for increased funding to investigate the etiology, treatments, and cures for ME, but grossly insufficient action. Congress has allocated the NIH a $7 billion increase over the past few years, giving the agency the resources to dedicate a fair funding level to for ME research. Now is the time. We cannot lose another generation of our people to ME. We are citizens, and we are no less worthy of a full life than those with cancer, heart disease, or multiple sclerosis.  
Our plan calls for significantly ramping up research funding to commensurate to the disease burden, which studies approximate at $190 to $250 million. Our letter details specific mechanisms that the NIH must take within the next 12 months to reach our key goals:  

  • To validate one or more clinically viable ME biomarkers to increase diagnostic accuracy within 3 years;
  • To begin NIH-funded clinical trials of one or more drugs as treatments for ME within 1 ½ years
  • To secure FDA approval of at least one treatment for specific usage in ME within 3 to 5 years.  

Read the full letter here

We will deliver a letter to the NIH director, Dr. Francis S. Collins early next week.  Only by moving quickly and effectively can we bring relief to those suffering with ME. We demand a face-to-face meeting with Dr. Collins to discuss implementation of this plan, and to ensure strong leadership from the agency.
 

Facebook
Twitter
WhatsApp
Email

Latest News

#MEAction logo is in white in the top left corner and the words Colorado State Chapter are in white laying across an image of snow capped mountains and pine trees. There is a bottom section of the image that is a green box with the words Working-With-Governors-Office-to-Create A New Senior Policy Advisor Role-Leading to Statewide Report on Long COVID

#MEAction Colorado Works With Governor’s Office to Create A New Senior Policy Advisor Role on Long COVID and Post Viral Infection Planning–Leading to Statewide Report on Long COVID

#MEAction Colorado’s first legislative effort in Colorado began with an ME/CFS day declaration in the Colorado Legislature on February 25, 2020. Representative Alex Valdez read into the legislative record a proclamation about the presence of and deleterious effects of ME in Colorado. This effort was relatively easy to accomplish and consisted of finding a representative

Read More »
Left: Woman healthy and happy standing beside her husband. Right: Sick woman in hospital bed.

Woman with Severe ME and EDS starving to death in NHS hospital

UPDATE: We want to provide a brief update on Sami Berry’s case and what she needs help with now. The situation in hospital reached the point that Sami decided she had to self-discharge to try and stay alive. She is at home with a Percutaneous Endoscopic Jejunostomy (PEJ ) tube but she needs treatment with

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top