Hello friends. A bill has been introduced to allocate one billion dollars ($1B) for long Covid research per year for 10 years. Long Covid is essentially ME/CFS, or at least ‘turns into’ ME/CFS after a period of time, so this funding could be very helpful for finding treatments for ME/CFS.

If you want to write or call your representatives to increase the chance of this bill passing, you can write write here or call here. It hopefully should not take more than 10 minutes of your time.

Thanks!

Chris

Here is a template for writing.

"Dear Senator <Senator's Name>,

I am your constituent, and like tens of millions of other Americans, chronic and complex illnesses like Long Covid continue to devastate my family and community.

I live in <area> and am writing to urge you to support increased funding for research into Long Covid and related illnesses (details below).

My <friend/family member> recently developed severe ME/CFS (a chronic complex illness very closely related to Long Covid) and is bedbound. Her suffering is beyond anything I have ever personally witnessed and it is also affecting her husband and their three young children (ages 3, 6, and 8).

Her symptoms are:

- unable to speak more than 100 words a day as the faintest whisper

- wears both earplugs and construction-grade earmuffs all day to block out noise

- unable to read more than a sentence or two per day

- unable to use her phone, including sending text messages

- unable to watch video

She lays in bed all day unable to do anything. The suffering is profound.

There is no known cause or cure. Most people who develop ME/CFS (and many with Long Covid) have it for the rest of their life (many commit suicide to end their suffering early).

We still have zero FDA-approved treatments and the NIH has shown little sense of urgency. 

After three years, the NIH RECOVER initiative has fallen far short of what impacted Americans need, and the February 2024 extension of that program represents a >50% funding cut, when the scale of the crisis calls for an acceleration of efforts. 

We need to do much more, much faster.

This means that we need a Moonshot for Long Covid — at least $1b in annual Long Covid research funding to the NIH Office of the Director, outside of the RECOVER Initiative, focused on accelerating drug trials, discovery of biomarkers and therapeutics, and research that includes poorly understood and under-resourced Long Covid associated conditions, such as dysautonomia, mast cell activation syndrome (MCAS), and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Please commit to supporting Long Covid research!

I understand that there are many competing priorities for funding, but I believe that investing in research for ME/CFS, Long COVID, and other IACCIs is essential. These conditions affect millions of Americans and can have a devastating impact on their quality of life.

Thank you for your time and consideration. I urge you to please support these critical funding requests.

Sincerely,

<name>

"