colleensteckel.bsky.social
Advocate for #MyalgicEncephalomyelitis using ME-ICC.
Contracted ME in 1989
Substack: https://colleensteckelmeiccinfo.substack.com/
Volunteer at www.MEadvocacy.org
Aspiring writer of paranormal fiction
1,164 posts
2,267 followers
1,521 following
Regular Contributor
Active Commenter
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Thanks. I thought you were posting about a new study. I track research and thought I missed something.
open.substack.com/pub/colleens...
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Connection only that it is another article about the biology of ME/CFS.
Thought you would be interested.
Do you have a link to the Tcell paper?
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Have you seen this paper that found 2 different groups?
We are seeing more evidence of why it is so important that we differentiate patients under the ME/CFS umbrella.
www.mdpi.com/2077-0383/14...
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Do you have a link to that paper?
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This trend toward blaming the patient for their illness is not new...
Behavior modification instead of medical care isn't cheaper in the long run!
Ask anyone with #MyalgicEncephalomyelitis or #LongCovid or #Fibromyalgia or any other marginalized disease told they just need to diet & exercise.
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Sigh. As someone who has lived with #MyalgicEncephalomyelitis for decades... and advocate for better care, there is ample evidence for too many doctors who seem to have lost whatever good they had.
Believe patients when they tell you exercise makes them sicker ...
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Need a mask? 😉
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I really appreciate that your reference for "ME/CFS" was the Canadian Consensus Criteria (CCC).
Thank you also for including the ICC.
It is vital that doctors who treat these patients learn about these criteria.
For anyone not familiar with those criteria: open.substack.com/pub/colleens...
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I get it. We really need patients stratified so we all know what to realistically suspect. I have ME as defined by the International Consensus Criteria. There is no cure...
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Thank you for paying attention to the differences seen under the ME/CFS umbrella! We need to stratify patients using all the tools we have. The International Consensus Primer clearly states the importance of differentiating between patient groups.
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Ugh. The harm of these "philosophical approaches" is incalculable!
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Maybe. I still have to be very careful to stay within my energy production window.
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Have been on it since 2014. I have all the signs of low blood volume - often seem in ME. Weekly IV fluids have helped me a lot. Ivabradine did not affect my post-exertional neuroimmune exhaustion - so I still have to be careful to manage my energy usage.
open.substack.com/pub/colleens...
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Interesting question. I am on Ivabradine. My EP cardiologist said that slowing the hr helped my heart fill more effectively.
Would be interested in Workwell's thoughts.
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Definitely! My other goal is stay out of the ER. 😉
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Thank you for sharing.
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That's good to hear! Thanks.
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Ona - are the presentations all in German? The website indicated they would be. If so, hopefully we can get translations of the transcripts.
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My concern is that treatment will be seen as a one size fits all. We know that many patient groups are lumped under the ME/CFS umbrella.
If the muscle dysfunction is protective in some then treating that may be dangerous. We need to pursue it, but we need to stratify groups to check for safety.
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Just realized this is from the conference. Thanks for sharing info from it.
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Do you have link to the talk?
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This MDC002?
mitodicure.com
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"Thus, in all these studies, neither viral persistence, overt inflammation, myositis nor obstructed capillaries are found as the cause of muscle damage"
Maybe not seen in those studies, but I think it premature to rule those out.
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"skeletal muscle pathology, tissue damage and mitochondrial damage and dysfunction have now been clearly demonstrated by directly analysing muscle tissue"
That makes sense.
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Thanks for this article. Getting MCAS under control significantly improved my quality of life.
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Thank you for sharing. 🙂
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Glad to see someone looked at this! We have known for decades that research labeled "CFS" often used patients who didn't have #MyalgicEncephalomyelitis.
That led to bad treatment recommendations like CBT and GET.
Which is why we made targeted research lists: open.substack.com/pub/colleens...
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“Lieutenant Governor Stratton is a fierce and compassionate leader who will stop at nothing to deliver for Illinoisans all across our state,” Carol Moseley Braun writes.
thetriibe.com/2025/05/pers...