View from the Trenches of Myalgic Encephalomyelitis
Colleen Steckel: ME-ICC InfoMyalgic Encephalomyelitis is a devastating debilitating disease. Diagnosis is not to be taken lightly. I contracted ME in 1989. Not only do I battle ME, I also battle the systemic bias by advocating for better understanding.
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colleensteckelmeiccinfo.substack.co...Latest Issues
May 12, 2026 - ME awareness
Content warning - discussion of death
May 12 awareness for C.I.N.D.’s (Complex Immunological and Neurological Diseases) was Initiated in 1992.
The only reason this awareness day exists is because many volunteer advocates have spent c...
News: 2026 May 1
In this article:
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ME Global Chronicle (MEGC) #56
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Hillary Johnson’s latest articles
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Loss of advocate David Black
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Dr. Groysman
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David Tuller - Last Berkeley Fund Raiser
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Nasal spray to treat cognition issues
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Hu...
Beyond the Illness
Edited May 6, 2026 to add Spanish translation at the end.
The following is a guest post from my friend Ona Albizu who lives in Spain. We have worked together for several years on various projects to advocate for myalgic encephalomyelitis....
Upcoming Conferences
The following are some of the upcoming events being put on by various organizations that will include information related to myalgic encephalomyelitis.
While not all of these are specific to ME, I think it is in our best interest to have r...
PolyBio Research Foundation News
I am celebrating another year surviving with ME. If you know - you know!
I came across a recent article about some of the latest work at PolyBio and it gave me much needed hope that someone is making progress on ways to diagnose and treat...
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Authors
The writers behind this newsletter.
Sudden onset Myalgic Encephalomyelitis 1989. Advocating for adoption of ME-ICC to improve patient outcomes & quality research. Info includes ME/CFS, CFS, Long COVID. chronic Lyme & other marginalized diseases. Not to be considered medical advice.
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