Our petition to HHS for recognition of Myalgic Encephalomyelitis as defined by the ICC has reached over 5,900 signatures! Thanks to everyone who signed and shared the petition. We sent an open letter to HHS Secretary Azar for an appointment to discuss and deliver the petition to him.
Open Letter to Secretary Azar
An open letter was sent yesterday to the Secretary of the U.S. Department of Health and Human Services (HHS), Alex M. Azar II. The letter urges Secretary Azar to implement the International Consensus Criteria (ICC), disseminate the International Consensus Primer (IC Primer), use the name Myalgic Encephalomyelitis and to stop the campaign to implement, disseminate and code systemic exertion intolerance disease (SEID).
Please read the full open letter to Secretary Azar here - https://meslugger.files.wordpress.com/2019/04/open-letter-to-secretary-azar-1.pdf
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 - https://www.conginst.org/contact-congress/
Petition Call to Action
We encourage everyone in the ME community to continue to sign the People with ME for ICC (#pwME4ICC) petition (https://www.change.org/p/the-us-department-of-health-and-human-services-cdc-adopt-the-distinct-disease-myalgic-encephalomyelitis-me-as-defined-by-icc-now to HHS urging the implementation of the ICC, dissemination of the IC Primer and the use of the name Myalgic Encephalomyelitis. After signing the petition, please share and promote it on Facebook and Twitter.
Organization Call to Action
Please become a member of or volunteer for the organization MEadvocacy ( https://www.meadvocacy.org and support their efforts to advocate for proper criteria and name (ME-ICC).
Twitter Call to Action
Join the Twitter initiative #TeamTweetStorm to promote the ICC, the IC Primer for ME and to stop the government's campaign to bury ME with their new criteria SEID. After you join Twitter, follow Eileen Holderman @TurnItUp4ME and Gabby Klein @GabbyKlein1 to participate in our ongoing Twitter initiative.