Sign MEAction's Letter to Francis Collins

Share on facebook
Share on twitter
Share on email

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.
 

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
Email

Latest News

World ME Alliance Completes Major Name Change and Rebrand

#MEAction is proud to be a founding member of the World ME Alliance, a coalition of national ME/CFS organisations, which announces today a major name change and rebrand from the International Alliance for ME. To modernise and promote its unique role, the World ME Alliance is launching a new website, with a new name, logo,

Read More »

Sign petition To Fix ME/CFS tracking In US!

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the

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