Looking Back and Preparing for Road Ahead



The end of 2018 is fast approaching.  MEadvocacy has continued efforts advocating for people with myalgic encephalomyelitis (ME) as defined by our ME experts using the International Consensus Criteria (ICC). We are currently putting the finishing touches to the upgrade of our website in order to deliver a better output and be more user-friendly. We are grateful for the generous donations making it possible to update and continue our website.

This year, we published a blog on advocacy efforts learned from Martin Luther King, Jr. We provided comments to NINDS/CDC CDE program and provided details of concerns for #pwME.  We endorsed and urged you to sign the petition from #pwME4ICC to HHS insisting they adopt the ICC criteria for diagnostic and research purposes.

MEadvocacy revealed the secretive meeting which took place in order to change the ICD coding for ME, CFS and SEID. We warned the community of the dangers to #pwME if this specific proposal would take effect. We asked for a deferral of the topic to give the community time to evaluate and comment but this was denied by NCHS/CDC. MEadvocacy provided comment (prepared by advocate Jerrold Spinhirne) to NCHS/CDC rejecting the proposed ICD-10-CM changes.

We are looking forward to continuing our advocacy efforts for ME patients and raising awareness of the US government health agency’s actions which affect #pwME.  

We hope that everyone is able to enjoy the holidays despite all the pain and suffering. We commit to continue our efforts on behalf of the community in hopes that next year’s holidays may be even better.

What You Can Do:

Sign and share the petition which calls on HHS to “accurately name, define, fund and represent the distinct biomedical disease ME which has been recognized by the World Health Organization (WHO) since 1969 as a neurological disease with the ICD code G93.3 and has been well-defined by the 2011 International Consensus Criteria (ICC). Since October 2015, the US ICD-10-CM classifies ME with the same neurological code, G93.3, as the WHO ICD.”

If you are interested in volunteering for MEadvocacy in 2019 as health or time permits, please sign up here.

Feel free to connect with us on:

FaceBook - @MEadvocacy.org https://www.facebook.com/MEadvocacy.org/

Twitter -     @meadvocacy_org https://twitter.com/meadvocacy_org

Email -        [email protected]

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  • Joni Elliott
    followed this page 2018-12-22 01:06:00 -0500