I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
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Thursday, April 04, 2019
HAPPENING TODAY: ME/CFS Conference & Contact Your Congress Reps
I've been snowed under this week, preparing for three trips in the next two weeks (wish me luck!), so I am a bit late on this, but there is still plenty of time for you to participate in these two events happening today and tomorrow:
NIH Conference: Accelerating Research on ME/CFS
This much-anticipated conference is going on today and tomorrow (Friday), through 6 pm, so there is still plenty of time to watch it on Livestream. The speakers are all a Who's Who of top ME/CFS researchers, presenting the latest research findings, and tomorrow morning there is a Clinician Panel Discussion featuring treatment advice on different topics from five of our favorite top ME/CFS experts, who have helped so many patients (including my son and I!) - Dr.'s Bateman, Levine, Montoya, Peterson, and Rowe.
You can read the agenda for the 2-day meeting here.
And you can join the Livestream here now and/or watch the recorded sessions later here. I'm going to have to settle for watching the recorded sessions later, so please let me know if you see anything interesting that I shouldn't miss!
Solve ME/CFAS and #MEAction Advocacy Week
Hundreds of patients and their families and friends have gathered in Washington, DC, this week to lobby their Congressional representatives in person for additional funding for ME/CFS, as well as other needed actions. But there is still time for you to help, right from your couch or bed!
This page provides all the details. From that page, you can send a letter to your Senators for an upcoming appropriations bill, call your Congressional representatives, and share these actions on social media.
Here's a quick link to send a message to your Senators, asking them to sign two ME/CFS-related appropriations letters currently being circulated (April 9 is the deadline). I just did this, and it took less than 5 minutes! All you have to do if fill in your contact info and add a personal message, if you want to - the specifics of what you are asking them to do are already detailed in the letter for you.
Sorry again for the lateness of this post...but there is still plenty of time to participate in both of these events, right from your home.
We need all the help we can get, so add your voice to this important call-out. It only takes a few minutes!
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