Recently we had meetings in the Colorado offices for Democratic Rep. DeGette and Republican Rep. Buck to discuss the situation with the disbanded CFSAC (Chronic Fatigue Syndrome Advisory Committee) and to start educating our Representatives’ offices about ME so that they will more readily ally with us on current and future requests.
We were there for these reasons:
- To educate them on ME and why it is important to support our cause
- To ask them to join forces with other Reps. who are in discussions with the HHS (Health & Human Services) on our behalf to find out why they got rid of the CFSAC
- To ask them to send this letter to a health committee asking for investigation into the ME/CFS health epidemic
- To be willing to support us with future ME legislation when it is introduced.
- Since DeGette is on that health committee, we asked her to use her role there to make sure that ME gets proper consideration and floor time.
As always, the people we talk to were friendly, willing to learn. Neither had heard of ME before, which highlights how critical the education and awareness component of these visits are. The people we met with were (as always) non-committal and agreed to discuss things with their colleagues in DC. I am cautiously optimistic that we’ll have support to one degree or another. We will be following up with them and see what if anything we need to do to push it forward with them.
We’ve taken care of visiting Reps. DeGette and Buck and have people in charge of Joe Neguse (running to replace Rep. Polis) and Rep. Perlmutter. We need someone to help with the other three districts. It is much easier than it seems and the volunteers from the other districts who have been through it can help you every step of the way. Please email email@example.com if you want to help, or contact me on FB or by PM. Everyone who has visited a Congress office has felt heard, validated and seen in a powerful way.
You can enter your zip code here to find your congressional representative. People with ME, loved ones, friends and allies are all welcome to help. The only qualification is that you should be in the district of the Representative you are helping to contact.
Note–I know that the name “CFS” is a hot button for many people and that some prefer names other than ME, but in talking with congress offices, we match the names that the members of Congress would be familiar with, thus the names CFSAC and ME/CFS.