Colleen Steckel
@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
Contracted ME in 1989
Substack: https://colleensteckelmeiccinfo.substack.com/
Volunteer at www.MEadvocacy.org
Aspiring writer of paranormal fiction
Knowledge is empowering. Thank you for listening...
November 29, 2025 at 3:16 AM
Knowledge is empowering. Thank you for listening...
That's for sure. I use a cane/chair and sometimes a wheelchair. The fluctuating nature of ME is hard for many to understand.... most don't really understand it unless they experience it directly. Which is not something I would wish on anyone...
November 28, 2025 at 10:58 PM
That's for sure. I use a cane/chair and sometimes a wheelchair. The fluctuating nature of ME is hard for many to understand.... most don't really understand it unless they experience it directly. Which is not something I would wish on anyone...
That is a good description. Although for some of us with #MyalgicEncephalomyelitis it is more like being pushed off a cliff. Fine one day and completely debilitated the next.
November 28, 2025 at 10:05 PM
That is a good description. Although for some of us with #MyalgicEncephalomyelitis it is more like being pushed off a cliff. Fine one day and completely debilitated the next.
It is tedious...
November 28, 2025 at 6:13 PM
It is tedious...
Spices is not enough info! Cinnamon has become a problem for me and it's in a lot of stuff. Hope the reaction clears quickly.
November 28, 2025 at 6:11 PM
Spices is not enough info! Cinnamon has become a problem for me and it's in a lot of stuff. Hope the reaction clears quickly.
I am fortunate as well. The support has been life saving. I, too, wish more had that kind of support.
November 28, 2025 at 5:57 PM
I am fortunate as well. The support has been life saving. I, too, wish more had that kind of support.
That is not good. There are other groups that support patients in a better way. Although many groups (including ones I manage) don't usually allow go fund me due to too many being scams and no way for admin to really check validity.
Hopefully you find some that give better support.
Hopefully you find some that give better support.
November 28, 2025 at 5:56 PM
That is not good. There are other groups that support patients in a better way. Although many groups (including ones I manage) don't usually allow go fund me due to too many being scams and no way for admin to really check validity.
Hopefully you find some that give better support.
Hopefully you find some that give better support.
Interesting hypothesis. I suspect the gut issues are downstream of the cause of ME. But it will be interesting to see what they learn. Really hope they do careful patient selection...
November 28, 2025 at 5:51 PM
Interesting hypothesis. I suspect the gut issues are downstream of the cause of ME. But it will be interesting to see what they learn. Really hope they do careful patient selection...
I understand. Definitely worth considering the complications that could arise from doing that.
November 26, 2025 at 8:05 PM
I understand. Definitely worth considering the complications that could arise from doing that.
I am aware of it but to be honest I am waiting to see if they are effective with the $. We have seen so much $ go to crap research... I would feel more excited if I knew they were using patient selection for the studies based on the ME-ICC.
November 25, 2025 at 3:29 AM
I am aware of it but to be honest I am waiting to see if they are effective with the $. We have seen so much $ go to crap research... I would feel more excited if I knew they were using patient selection for the studies based on the ME-ICC.
I hear ya. I have done a lot of volunteering but it's at a much slower smaller level than I would like. Doing advocacy at my own pace has worked out the best for me. But I really miss in person volunteering.
November 25, 2025 at 3:26 AM
I hear ya. I have done a lot of volunteering but it's at a much slower smaller level than I would like. Doing advocacy at my own pace has worked out the best for me. But I really miss in person volunteering.
Sigh. The music in the background is more than my ME brain can process.
November 24, 2025 at 3:36 PM
Sigh. The music in the background is more than my ME brain can process.
Sheesh. Sounds like the criticism hit a nerve. We need high quality research. If researchers don't understand why patients might offer feedback about their methods they are just one more researcher who won't listen to patients. I haven't seen the remarks though....
November 24, 2025 at 3:31 PM
Sheesh. Sounds like the criticism hit a nerve. We need high quality research. If researchers don't understand why patients might offer feedback about their methods they are just one more researcher who won't listen to patients. I haven't seen the remarks though....
Thank you. Helpful insight.
November 23, 2025 at 8:02 PM
Thank you. Helpful insight.
Do you have link to their response?
November 23, 2025 at 3:55 PM
Do you have link to their response?
8 years! Doesn't seem that long ago. So many lost...
November 22, 2025 at 8:21 PM
8 years! Doesn't seem that long ago. So many lost...
From what I have looked into, the more distinct disease ME as defined by the ICC seems to be about .4%. The broader umbrella of ME/CFS including LC) may be as much as 4%.
We need stratification in order to get more personalized medicine. One size does not fit everyone under that umbrella.
We need stratification in order to get more personalized medicine. One size does not fit everyone under that umbrella.
November 22, 2025 at 4:05 PM
From what I have looked into, the more distinct disease ME as defined by the ICC seems to be about .4%. The broader umbrella of ME/CFS including LC) may be as much as 4%.
We need stratification in order to get more personalized medicine. One size does not fit everyone under that umbrella.
We need stratification in order to get more personalized medicine. One size does not fit everyone under that umbrella.
Fingers crossed you are able to do that. We need more who are familiar with the quality research.
November 21, 2025 at 4:51 PM
Fingers crossed you are able to do that. We need more who are familiar with the quality research.
Thanks for all the posts. It is good for people to see there has been a lot of press over the years. It also shows how society was misinformed over and over again.
November 21, 2025 at 1:46 PM
Thanks for all the posts. It is good for people to see there has been a lot of press over the years. It also shows how society was misinformed over and over again.
More studies easy to find using search function in my 2 lists of research. Info about those here: open.substack.com/pub/colleens...
Myalgic Encephalomyelitis Research
Brief Update on research lists
open.substack.com
November 21, 2025 at 1:39 PM
More studies easy to find using search function in my 2 lists of research. Info about those here: open.substack.com/pub/colleens...