Parliament EDM 271 Urges NICE to Update Guideline on ME

Parliament EDM 271 Urges NICE to Update Guideline on ME

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UPDATE On 20th September, NICE overturned the original proposal and announced it would review its guideline on ME. This is great news but means we need to double our efforts to make sure that the new guideline is robust enough to protect and help people with ME for generations to come ...

As Summer Ends, A Warning to NIH

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Johanna Kaiser, a person with ME, sent this open letter over Labor Day to the director of the National Institutes of Health (NIH), Dr. Francis Collins, and the director of National Institute of Neurological Disorders (NINDS) ...

Tools to Help Children with ME/CFS Succeed

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New resources are available to help parents and educators provide accommodations and resources to help children succeed in school.

First of its kind! Nevada delegation sends letter to NIH on ME/CFS

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On September 8th, Nevada's full Congressional Delegation sent a letter to Director Collins of the National Institutes of Health urging him to "strengthen and accelerate" its work on ME/CFS.

Senate Appropriations Committee Recommends Restoring ME/CFS Funding

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On Sept. 7, the ME/CFS community breathed a sigh of relief as the Senate Appropriations Committee recommended restoring the $5.4 million Chronic Fatigue Syndrome program under the CDC.

Did you see ME/CFS on PBS?

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A national, televised program on ME/CFS aired this month on the show, “The White House Chronicle,” with host Llewellyn King.

Finding Connection within M.E.

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During the initial years of having Myalgic Encephalomyelitis (ME), it is common to watch all your interpersonal ties slowly dissolve. Being in my early 20s, those around me craved excitement, adventure, and new experiences. Those things I desired too, but little of which I could do or offer in my


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La desaparición de mi capacidad de leer extensamente es una de mis mayores pérdidas. Lo intento, pero las páginas se petrifican. Ahora debo contentarme con unos pocos párrafos; algunos días con un par de líneas.

Why Society Shuns People with ME

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Listen to the audio version recorded by Anna Ruddock @annalouruddock Cindy Downey wrote this editorial as a response to the opinion piece, "The Emotional Toll of Not Being Heard," published by Christina Baltais. Artwork by Cindy Downey. Thank you, Christina, for your eloquent comments about the emotional toll from the wall of stigma

Hosting a Screening of Unrest? Learn How to Talk to the Press

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If you are hosting a screening of Unrest in your community, you will want to reach out to your local press about covering the screening. Below are some training resources to help you prepare to speak to the media. These tools were developed by #MEAction for the #MillionsMissing Day of

Community Symposium Summaries Now Published

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You can now read about the details in two published pieces.

End ME/CFS Worldwide Tour Continues

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New tour dates announced: September 16 in Minneapolis and November 4 in Boston. Join us!

Reading matters. Let’s hear it!

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The demise of my ability to read extensively is one of my greatest losses. I try, but pages petrify. A few paragraphs must do me now; some days a couple of lines. It's an issue many #pwme wrestle with, and contributes to our sense of separation.

The Emotional Toll of Not Being Heard

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This story won’t be particularly unique or shocking to anyone living with ME. Every single one of us has a plethora of stories like this, and far worse than this. It has happened so many times over the last 11 years. What shocks me is the degree to which it