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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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The Cut

Are you prepared for an 18% reduction in ME spending?
I’m not. For one thing, the first year of funding for the new Collaborative Research Centers is set aside in this year’s budget. But all bets are off going forward. Like many other RFAs, the one for ME Centers explicitly states, “Future year amounts will depend on annual appropriations.” So it is possible that future years of funding could be cut or eliminated.

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Coming Out of the Closet

Obviously, I still have not integrated the sick person I am with my self-concept. In my heart, I aspire to be an adventurer. In my brain, I am a popcorn popper of plans and temptations. In reality, I can do one activity and, on a good day, maybe two, but not day-after-day in a row. On a bad day I have to be still. I have to wait for the temporary reprieve that recovery mode will eventually bring.

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