On July 8, 2019, activist Eileen Holderman and Gabby Klein, met in Washington, DC with a Senior Advisor of the Office of Intergovernmental and External Affairs of the Department of Health and Human Services (HHS) to discuss the requests in the Open Letter to Secretary Azar and to deliver the petition approaching 7,000 signatures.

You can read all the correspondence that led up to the meeting and the letter following the meeting with HHS here.

The Open Letter to Secretary Azar requests the following:

• use International Consensus Criteria (ICC) for all research, programs and medical education
• use International Consensus Primer for all medical education and CMEs
• use the proper name - myalgic encephalomyelitis
• stop using SEID (name and definition) in research, diagnosis, medical education, and coding

While we are waiting for a reply from HHS, we are asking the ME community to do the following in support of this initiative:

Congressional Call to Action

Please email, phone or visit your congressional representatives and urge them to contact Secretary Azar to implement the ICC, disseminate the IC Primer, use the name myalgic encephalomyelitis and stop the campaign to implement, disseminate and code SEID. 

When you contact your Congressman briefly explain how myalgic encephalomyelitis has impacted your life and use the open letter as your talking points for your asks.

Find your members of Congress here.

Sample email:

Dear _______:

As your constituent, I am reaching out to you to contact Secretary Azar of the Department of Health and Human Services on my behalf.

I have been ill with the debilitating neurological and immunological disease myalgic encephalomyelitis (ME) for the past ___ years. The burden of the disease is huge affecting loss of quality of life, loss of employment, with no access to effective health care.

There are currently no FDA approved treatments for the disease which has been neglected by our government health agencies. CDC has created and is using faulty criteria (SEID) and demeaning name (CFS, or ME/CFS) for the disease.

ME advocates have met with a senior advisor to the office of the Secretary urging HHS to do the following:

• use proper criteria for the disease - the International Consensus Criteria (ICC) for all research, programs and medical education
• use proper medical educational tools - the International Consensus Primer (IC Primer) 
• use the proper name - myalgic encephalomyelitis 
• stop using SEID (name and definition) in research, diagnosis, medical education, and coding

I request that you call on the Secretary in support of this initiative as soon as possible.

Sincerely,

__________

FOR THOSE OUTSIDE THE US

As the adoption of the International Consensus Criteria in the US will help everyone around the world, please share this information on social media and sign/share the petition.

Twitter Call to Action

Support the series of 3 tweets started by activist Eileen Holderman @TurnItUp4ME about the meeting by “liking”, “retweeting” and commenting on the thread: (use hashtags #TeamTweetStorm #PwME4ICC) 

1. On July 8, 2019 activists Eileen Holderman+Gabby Klein met w Sr. Advisor @HHSGov in Washington 2 call 4 ICC, IC Primer 4 ME, stop SEID & deliver petition. Thank u 2 advocate Jeannette Burmeister & #TeamTweetStorm pic.twitter.com/K6AL2K64Fs

— Eileen Holderman (@TurnItUp4ME) July 12, 2019