USA: From Solve ME - Educate your Members of Congress about a "HOME" for IACCIs at NIH

ahimsa

ahimsa

Senior Member (Voting Rights)
Solve ME has created an automated tool (meant for folks in the USA) that will contact your Member of Congress (email/phone/twitter) and ask them to support a new "home" for "Infection-Associated Chronic Conditions and Illnesses" (IACCIs).

Text part of the automated tool:
Solve ME said:
Educate your Members of Congress about a "HOME" for IACCIs at NIH

Infection-associated chronic illnesses and conditions are a public health crisis!

Diseases like ME/CFS, Long COVID, POTS and other forms of Dysautonomia need your help! Educate your Members of Congress:

- IACCIs average $5.2 million per year in funding from NIH
- IACCIs impact between 33.1 million-73.3 million Americans (estimated)
- Studies on major IACCIs are distributed between 16 different institutes and centers with no coordination
- Studies are often duplicated or exploring unhelpful areas of research (eg. exercise or mental health) and not focused on treatments
- We seek a coordinating mechanism at NIH to reduce duplication, fast-track treatments, and more efficiently use existing research resources

Read full publication "A Home for Infection-Associated Chronic Conditions and Illnesses (IACCIs) at NIH" here

Ask your Member of Congress to read this important publication!
Click to expand...

There's another thread that discusses this general idea of creating a new NIH office:

https://www.s4me.info/threads/the-n...erican-association-of-scientists-2024.37668/\

I think it's better to debate the issue on that thread (should a new NIH office be created?) and leave this thread to discuss advocacy issues (e.g., does the tool work, are there better ways to achieve this goal).

But if I'm wrong I hope the moderators will move/merge threads as needed. :)
 
ahimsa said:
Solve ME has created an automated tool (meant for folks in the USA) that will contact your Member of Congress (email/phone/twitter) and ask them to support a new "home" for "Infection-Associated Chronic Conditions and Illnesses" (IACCIs).
Click to expand...
After completing the tool it takes you to a page where you can tweet your reps/senators. The "link" where it should place a link to a document is broken. Instead the tweet that is prepared by the tool shows "((SHORT LINK))" in X/Twitter.

EDIT : I don't know what email was actually sent by the tool. Did it actually include the right link? Is the tool meant to be live yet?
 
I'm happy to report that I received an email from Solve Executive and Advocacy Manager that the Tweet issue has been fixed after I reported it. That was very quick :).

The customer service team will also make sure the email sent out is populating names and links correctly - just as a precaution.
 
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