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

Questions to Ask Prospective MPs About ME/CFS

In the next few weeks, candidates will be knocking on doors seeking votes for the upcoming UK Election. It’s important that candidates from all parties are made aware of the challenges facing people with ME and Long Covid. It can be a little daunting to be unprepared so here are some questions you might want

Read More »
red rectangle with the #MEAction Scotland logo on the left hand side and the words Impact Statement 2022-2023 on the right.

#MEAction Scotland publishes impact statement

#MEAction Scotland is pleased to publish our impact statement, which covers March 2022 to May 23. It reports on our work to campaign for effective support, create stronger advocates and raise awareness. As a small group of volunteers, it’s unfortunately not always possible to continually update on our activities as they happen, so the statement

Read More »
reddish rectangle image with different color stripes of red coming out at a diagonal from the center. In the center is the TeachMETreatME logo. The words celebrating an impactful campaign in white font underneath the logo.

#TeachMETreatME: Celebrating An Impactful Campaign

We are THRILLED to share the rolling successes of our #TeachMETreatME campaign with you, as we report back on the amazing medical education events that have taken place so far – with many more to come in the upcoming months! (And don’t miss the global #MillionsMissing events later in the article!) Over the past several

Read More »
Scroll to Top