Long Covid and ME/CFS folks— Developing relationships with the health staffers for your Members of Congress is well worth your time, and this is a great opportunity to be introduced to them. The meetings this year will all be remote, and Solve will train you! - ThreadSky

chromatowski.bsky.social • 8 days ago

Long Covid and ME/CFS folks—

Developing relationships with the health staffers for your Members of Congress is well worth your time, and this is a great opportunity to be introduced to them.

The meetings this year will all be remote, and Solve will train you!

Reposted from Matt Lazell-Fairman

🚨 The deadline for signing up for @solveme.bsky.social ME/CFS Advocacy Week has been extended to May 27! Just 3 more days to sign on! #MECFS #LongCovid

Comments

ahimsa-pdx.bsky.social•8 days ago

I signed up a week ago! 😁

Also signed up for a training session.

chromatowski.bsky.social•7 days ago

Awesome!

chromatowski.bsky.social•8 days ago

After these meetings, my rec is to send a thank you note to the staffers you met, saying you hope you can continue to be in touch and would like to serve as a resource on these issues. Then set an alert in your calendar to follow up once a month w/a news item or easy-to-digest study on ME or LC.

2/

chromatowski.bsky.social•8 days ago

Keeping in touch will make you a trusted interlocutor and give you an opening when there’s something we need their boss’s support for (a bill, a letter, etc.)

3/

chromatowski.bsky.social•8 days ago

If you do this, let me know and I’ll put you in touch with other advocates who are doing similar work (so that you know when there’s something to ask for!)

4/4

tinydogtime.bsky.social•6 days ago

Please put me in touch with other advocates

torres-amy.bsky.social•6 days ago

I am also signed up. This will be my second year. I did email the contacts from Senator Markey and Senator Warren’s office occasionally. This year I will take your advice and make it a monthly communication.

Please connect me to other advocates if you have a chance.

chromatowski.bsky.social•6 days ago

Awesome, DMing you now!

suzbrockmann.bsky.social•7 days ago

I just signed up for this!! I’m in MA. (Just got an official LC ME/CFS diagnosis from Yale New Haven, after 5+ years of illness.)

chromatowski.bsky.social•7 days ago

Oh fantastic—for the signup, not for the diagnostic delay—that part is outrageous 😭 Relieved Yale finally recognized it.

Excited to hear how the meeting goes!! Lmk if you end up staying in touch w/the staffer you meet, there are some more advocates doing ongoing work like that, I can loop you in!

suzbrockmann.bsky.social•7 days ago

Thank you!!!

chromatowski.bsky.social•7 days ago

When you see a Rep or Senator sign onto leg supporting ME or LC, in most cases, it was facilitated by a community member who fostered a relationship w/the office. Calls/emails help too, but these relationships make those go a lot farther. If we had a lot more, we’d be in a very different position.

chromatowski.bsky.social•5 days ago

Last day to sign up for this!

And the meetings themselves (Zooms that last usually 20 or 30 mins each) will be in June 23-27.

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