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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Nevada Only! Congressional Action Alert

Emily Taylor

Senior Member
Messages
149
Location
Los Angeles, CA
Solve ME/CFS Initiative News Bulletin
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ME/CFS Action for Nevada
Dear friend,

The Solve ME/CFS Initiative is teaming up with Courtney and Bob Miller and people with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) across Nevada. Congressman Mark Amodei is leading the whole Nevada delegation in Congress to sign a letter to National Institute of Health (NIH) Director, Dr. Francis Collins, urging more funding for research on ME/CFS.

We need Nevada patients, caregivers, and loved ones to take action!

Use our easy action alert button below to ask them to join the NIH letter. Friday is the deadline.

The Nevada delegation is on the forefront of ME/CFS because of the years of advocacy from Northern Nevada and the history of the disease in the Lake Tahoe region. This action can set the precedent to have other states step up too.

 

Cort

Phoenix Rising Founder
I love it. I'm on board :)

I think that its great that we have a professional advocate. The template is easy to fill out (be sure to remember to mark whether you are a MR or MRS or MS...)

This is what I sent:

Please support Congressman Amodei in asking that chronic fatigue syndrome finally get the funding it needs. Too many people have died, too many have had to live drastically reduced lives (studies indicate that ME/CFS is the most functionally disabling disease there is), too much talent has been wasted (see John Falk's story here - https://www.healthrising.org/blog/2017/09/06/good-bye-john-falk/) for too long. It doesn't take a lot in the great scheme of things at the NIH to fully fund a disease that strikes from 1-2 million people a year in the U.S. Everyone who is ill should get the support of the NIH. Nobody should be left out or left on their own as too many people have for too many decades. Please sign Congressman's Amodei letter and to give this disease and the people who have it their due.

Thanks for your time,

Yours truly,

Cort