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As Summer Ends, A Warning to NIH

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).

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Finding Connection within M.E.

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 current state of health.

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LA LECTURA IMPORTA ¡VAMOS A OÍRLA!

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.

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Reading matters. Let's hear it!

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.

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The Emotional Toll of Not Being Heard

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 still occurs and manages to affect me, no matter how much time I spend trying to advocate for ME.

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3 Ways You Can Join in a #TimeforUnrest

Update: View a recording of the call here – https://www.youtube.com/watch?v=LQWgvK1UsdQ ————————— The September kickoff of the #TimeforUnrest campaign is just around the

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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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