Sign here to support legislation that will make CFS much harder to ignore

overtheedge

Senior Member
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Solve M.E. emailed me this today
Here's the link, go there to send a prewritten letter in support of the act
https://p2a.co/i5SZHd5

you can also sign up to get emailed from Solve M.E. when they have other projects that need the prewritten letters sent/petitions signed/etc
https://solvecfs.org/news-and-insights/subscribe-to-newsletter/

I'm only on phoenix rising so if anyone who's on other, related, chronic disease forums can please copy n paste all this over there so you can rally support from them it would be something good to do

Senators Kaine, Markey and Duckworth
Introduce CARE for Long COVID Act

Solve M.E. champions post-infection illness research,
education, legal, and disability assistance in S. 3726





Yesterday, Senator Tim Kaine (D-VA) led the introduction of S.3726, the Comprehensive Access to Resources and Education (CARE) for Long COVID Act, alongside longtime ME/CFS champion, Senator Ed Markey (D-MA), and Senator Tammy Duckworth (D-IL). This legislation will improve research on and provide resources for people with Long Covid and “related post-viral illnesses,” such as ME/CFS.

Read more about this story in the Washington Post.

The CARE for Long COVID Act will:

  • Accelerate research by centralizing data regarding Long Covid and related post-viral illness patient experiences;
  • Increase understanding of treatment efficacy and disparities by expanding research to provide recommendations to improve the health care system’s responses to Long Covid and related post-viral illnesses;
  • Educate the public and medical providers by working with the CDC to develop and provide the public with information on common symptoms, treatment, and other related illnesses, specifically ME/CFS;
  • Facilitate interagency coordination to educate employers and schools on the impact of Long Covid and related post-viral illnesses
  • Create guidance to improve access to services for people with Long COVID and post-viral illnesses, including employment programs, disability assistance, and education rights; and
  • Develop partnerships between community-based organizations, social service providers, and legal assistance providers to help people with Long Covid and related post-viral illnesses access needed services.



This is a big win for people with ME/CFS, Long Covid, and other illnesses associated with viruses or viral triggers. Patient voices were centered in the development of this legislation.

Solve M.E., Long Covid Families, and our other advocate partners were involved in this process from the beginning. We applaud the efforts made by Senator Kaine’s office to listen and learn from those impacted by Long Covid the most — patients and caregivers. Senator Kaine has also shared that he is experiencing Long Covid symptoms nearly two years after contracting COVID-19.

Solve M.E. is proud to endorse S. 3726 along with Long COVID Alliance members, Long COVID Families, and American Academy of Physical Medicine and Rehabilitation (AAPM&R), in solidarity with the Association for University Centers on Disabilities, Community Legal Services of Philadelphia, the International Association of Fire Fighters, the Kennedy Krieger Institute, the National Center for Health Research, the National Organization of Social Security Claimants’ Representatives (NOSSCR), and The Arc.


TAKE ACTION: Tell Your Representative to
Support the CARE for Long COVID Act!




Click the link above to help urge your Senators to support Comprehensive Access to Resources and Education (CARE) for all post-viral diseases, including Long Covid and ME/CFS.
 
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Rvanson

Senior Member
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Location
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So it took a massive disease to initiate a program for "Yuppie Flu"? No thanks, I'll pass. I'll live with CFS/ME.

Many of these " long haulers" likely made fun of people sick with CFS/ME. Not going to help them at all.
 

Alvin2

The good news is patients don't die the bad news..
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Many of these " long haulers" likely made fun of people sick with CFS/ME. Not going to help them at all.
The bill is for covid long haulers, the point of this is to try and get us included. If we do nothing they are going to accomplish the same on their own behalf as they would have without us.
 

Woof!

Senior Member
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Oh oh. There is an obvious typo in the first sentence of their form letter to senators.