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View from the Trenches of Myalgic Encephalomyelitis

Myalgic 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.

Newsletter · By Colleen Steckel: ME-ICC Info · Official site

Indexed issues, last 90 days
6
Latest publication
Sep 19, 2026
Audience
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Earliest in this view
Jul 15, 2026

Latest issues

  1. Issue · Sep 19, 2026

    Myalgic Encephalomyelitis Research Lists Updated (opens the original)

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    I have been trying to follow the science of Myalgic Encephalomyelitis (ME) since I caught the disease in August 1989. I have seen a LOT of research under various labels that may or may not have applied to me.Research that MIGHT apply to me falls under the Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME) as well as ME/CFS labels. Because of this confusion it has been difficult to know what research is actually applicable to my cas

  2. Issue · Sep 8, 2026

    News: 2026 September 8 (opens the original)

    Excerpt · Neutral tone

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    First I want to rectify an error in my previous article, Wired Article Angers Patients/Advocates: Focus is on Behavior Modification for Long COVID, I mistakenly credited Miles Griffis for the article titled We must free Long COVID and the people living with it from the mind-body trap. It was written by Todd Davenport. My apologies for the error. The original post has been corrected.Preaching to the choir

  3. Issue · Aug 8, 2026

    Recognizing Severe Myalgic Encephalomyelitis (opens the original)

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    People with Severe ME are some of the most amazing humans I have ever met.The 8th of August is recognized as Severe ME day. I’m glad to see some are expanding that to the entire month of August. There is far too much to understand about this level of illness for just one day.The current status quo for the way people with Severe ME are treated (or anyone with ME) is truly unacceptable! There are things that happened this year to give me some hope. I’ve been writing about Severe ME since starting

  4. Issue · Aug 2, 2026

    Wired Article Angers Patients/Advocates (opens the original)

    Excerpt · Critical tone

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    While my focus for this Substack is Myalgic Encephalomyelitis as defined by the International Consensus Criteria (ME-ICC), some news items are directly related to this patient group. The following falls into that category.A June 1st essay about Long COVID published in WIRED magazine titled The Painful Truth About Long Covid brought a lot of negative reactions (behind a paywall).The subtitle exposes a serious bias:<span style="

  5. Issue · Jul 19, 2026

    News: 2026 July 19 (opens the original)

    Excerpt · Positive tone

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    ME Global Chronicle issue #57ME Global Chronicle’s (MEGC) latest issue has been published (28 June 2026). Full of news from around the world, including personal stories and updates on research affecting people with Myalgic Encephalomyelitis (ME).See Table of Contents for links to this issue’s articles HERE.This issue highlights the following:“We’d like to draw your special at

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