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We're upright in all but body!

#BedFest was quite the occasion. People appeared in PJ’s, crumpled t-shirts, crochet vests, keen to address the wider world; people whose voices are seldom heard, called together by #MEAction and its volunteers to share music, art, photography and multifarious creativity and raise ME-Awareness. We didn’t have to leave the house…

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Tell Congress "Don't defund ME/CFS!"

Last week, the House Appropriations Subcommittee on Labor-HHS zeroed out the $5.4 million line item for Chronic Fatigue Syndrome at the CDC….again. Tell your members of congress to restore the funding for ME/CFS for next year’s budget. We cannot abandon the progress we’ve made so far!

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NICE 2017 response

10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) (2007) NICE guideline CG53 Stakeholder consultation comments form

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Passionate Pragmatist: Carol Head and the Fight for ME/CFS Equality: The SMCI Pt. I

One of my deeply held personal values is that ALL people must be treated  respectfully…I have found that respectful, highly knowledgeable, forceful advocacy language that expresses the desperate needs of our community is the most effective. But please do not mistake my professional, respectful demeanor as anything less than a cover for my righteous indignation and outrage at the inhumanity of our community’s treatment” Carol Head

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Thirty U.S. House Reps Show Support for Appropriation Language

Thirty U.S. House representatives signed a letter last week urging their colleagues on the House Appropriations Committee to attach language to its report on the fiscal year 2018 budget that encourages the NIH, CDC and HHS to accelerate and enhance its work in research and education for ME/CFS.

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Global Call-to-Action: Help secure the World Health Organisation's Classification of ME & CFS

Urgent call to action! We need all hands on deck for a simple, but important task! The World Health Organisation (WHO) is reviewing its International Classification of Disease (ICD) for its upcoming 11th edition (ICD-11). There has been enormous concern about what was going to happen to how ME & CFS are classified in the new edition. It’s crucial that we take action now!

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