Thank you for taking action!

Your voice makes all the difference – thank you!

We hope you’ll join us in taking your advocacy to the next level, if you are able.

1. Share this action!

Share this action with your friends, family, and social media followers. They can use the same easy tool to send a message to their Senators and Representatives.

Post on Facebook Here

Share on Twitter here

Share this link here: https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00037

Together, we are strong!

 

2. Call your members of Congress

Even if you have already e-mailed and posted on social media, nothing beats an old fashioned phone call. Given the high volume of calls lately, be prepared to make several attempts before your call goes through.

Go here to FIND YOUR SENATORS and US REPRESENTATIVE: https://www.house.gov/representatives/find-your-representative

Identify the phone number for the Washington DC office and use the script below to make your call.

 

Sample Call or Voicemail:

Hello, my name is _______ (your name) and I am calling from _______ (city), ______ (state) in zip code ______ (your zip code). I am calling to ask Senator/Representative _________ to please pass a statute to create a new federal advisory committee for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). HHS disbanded the committee despite: 

  • 84 – 91% of people with ME/CFS remain undiagnosed or misdiagnosed
  • NIH research funding for FY18 is actually expected to DECREASE by 17.6%
  • There are still fewer than 12 expert ME/CFS clinical care practices serving an estimated 2.5 million American patients
  • ME/CFS costs the US economy between $17-$24 billion each year

The CDC has called this disease “America’s Hidden Health Crisis.” I ask you to work with ME/CFS organizations, experts, and community representatives to create and pass legislation creating a new federal ME/CFS advisory committee and programs.

Thank you!

 

3. Fax your member of Congress

Wow! You are a super-star advocate to make it this far! One more strategy you can use to make your voice heard, especially when phone lines are busy, is a hand-written fax. When you send a fax, you can also send printouts of the flyers, additional information or pictures as multiple pages.

Go here to FIND YOUR SENATORS and US REPRESENTATIVE: https://www.house.gov/representatives/find-your-representative

Identify the fax number for the Washington DC office and use the sample below to send your fax. 

 

Sample fax note:

Dear Senator/Rep. [NAME],

I was surprised and alarmed to hear that the Secretary of Health and Human Services allowed the charter for the federal advisory committee for Chronic Fatigue Syndrome to expire. It is urgent that Congress pass a statute to create a new federal advisory committee for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). 

While the Chronic Fatigue Syndrome Advisory Committee (CFSAC) is a discretionary entity, the committees work is of great value and importance as the only designated voice for up to 2.5 million Americans with this terrible disease. Out of the all of the discretionary committees under HHS, this is the ONLY committee that the administration has chosen to eliminate.

In the September 6 statement announcing the committees termination, HHS stated that The committee and ex-officio members have ably fulfilled the duties in the charter, yet:

  • 84 91% of people with ME/CFS remain undiagnosed or misdiagnosed
  • NIH research funding for FY18 is actually expected to DECREASE by 17.6%
  • There are still fewer than 12 expert ME/CFS clinical care practices serving an estimated 2.5 million American patients
  • ME/CFS costs the US economy between $17-$24 billion each year

The CDC has called this disease Americas Hidden Health Crisis and the work of the federal government to address this crisis is not yet done. HHS needs the input of patients, experts, and doctors through a Federal Advisory Committee to guide and shape good policy to address this critical public health issue. 

I ask you to work with ME/CFS organizations, experts, and community representatives to create and pass legislation creating a new federal ME/CFS advisory committee and programs.

It is unacceptable that the federal government abandon this vital work for millions who are suffering.

Sincerely,

_______ (your name) _______ (address), ______ (city), _______ (zip)

We are so grateful that you are joining our ME/CFS community in this advocacy work. Together, we are strong!