We are thrilled to share this Letter to the HHS that Sen. Bennet, and Reps. DeGette, Perlmutter, Neguse and Crow sent to the HHS regarding the CFSAC (CFS Advisory Committee). The letter demands answers after the committee was disbanded. Please see below for how to thank them on social media.
Last year, over 40 members of Congress including 2 from Colorado, signed a letter to the HHS. Not content to just do that, the staff of Sen. Bennet worked with us to craft a Colorado-specific letter which was signed by 11 of us from MEAction CO plus Diane Bean from the Solve ME/CFS Initiative Board of Directors. Sen. Bennet’s office added a cover letter and contacted all Colorado Members of Congress to come up with support from 5 of them.
This comes as a direct result of your support for our advocacy. All your emails and calls truly made a difference in catching Congressional attention in a big way.
We accomplished more than just 5 more voices in support: now every single CO Member of Congress is aware of our concerns!
Regardless of what happens with HHS and the CFSAC, when there is legislation introduced before Congress, we can count on strong support from most of our delegation, and awareness from them all.
We are deeply grateful to the four representatives who signed and especially to Sen. Bennet and his health staff for their extreme dedication and for going the extra mile for us.
Please thank our congressional supporters on Social Media. Personalize or use a minimal text for the Reps: “Thank you for supporting people with ME/CFS by signing the letter to HHS regarding the CFSAC.” And for Sen. Bennet: “Thank you for supporting people with ME/CFS by writing a cover letter to the HHS regarding the CFSAC and by contacting the rest of Colorado’s Members of Congress. I deeply appreciate your support.”
Here are their contacts on Facebook and Twitter:
Julie and John at office of US Rep Ken Buck
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.
Dan and John at office of US Rep Diana DeGette
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 firstname.lastname@example.org 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.