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.
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.