A theory inspired by my atypical case

T

tiredbutwired

New Member
As I mentioned in my introduction, I’m a patient and I came up with a theory. I’m not a scientist, so I’m sharing it only for the sake of discussion.
What I’m saying is potentially dangerous to patients, so interpret my findings with extreme caution!

Unfortunately it’s very long and complicated.
At first glance you will probably dismiss it, but if you take your time to read the whole thing and watch the video you might go “hmm, interesting”…

What patients often do is they read the first page then start to argue about it and ask questions that I already answered somewhere in the text.
Trust me, if I could’ve told my story in 1 page I would’ve done that. I tried… there is a TLDR, but it doesn't do justice to the text.
If I’m right, probably a surgery is needed to fix this, so it’s not something you can do at home.
At the last pages I answer many questions you might have and examine how my theory is compatible with others' research.

I know the frustration that patients feel, and observed that there is a psychological defense mechanism that makes them often confrontative when someone talks about a “cure”. I suspect the driving force behind it is the fear of disappointment. I would like to point out that this attitude is counterproductive, because it makes people less likely to share their ideas.

The fact that I was able to write a 23 page text about this proves that I got better. There was a 2-3 year period when I wouldn’t have been able to do this.
I recommend watching the 10 second animated explanation in my video from 0:29 first, then read the PDF, then watch the whole video.

What’s important to mention is that I didn’t feel anything being wrong in my neck. My pain was mostly at my scapula. I'm saying this because it shows that you don't necessarily feel any issues there other than the general, systemic nightmare we call ME/CFS.

There are a bunch of links in the text, but you don’t have to click on them, if you fear scams. You can just search for the quoted sentences.

Link to the youtube video (or search title : "A Potential Theory of Chronic Fatigue Syndrome"):
https://youtu.be/2P7RUtRR9-0
I attached 2 versions of the PDF, one with white background for print and one with grey background for patients.

Except for a few sentences, the whole thing is written by me, without the use of AI. I did use Gemini for research and MRI evaluation.

Thanks! Let me know what you think!
 

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Dear @tiredbutwired, I am a professor of medicine rather than a patient. I am interested in any theoretical suggestions but I am not interested in chasing lengthy expositions that cannot be summarised in a couple of sentences - simply out of politeness if nothing else.

I don't think we have any evidence of a link between ME/CFS and EDS, despite a lot of memes about that on the net.

Can you just tell us roughly what you are on about?
 
tiredbutwired said:
I know the frustration that patients feel, and observed that there is a psychological defense mechanism that makes them often confrontative when someone talks about a “cure”. I suspect the driving force behind it is the fear of disappointment. I would like to point out that this attitude is counterproductive, because it makes people less likely to share their ideas.
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Thanks for sharing your story, but you come across as a bit presumptuous. We are very familiar with neck/mechanical/bendy issues on this forum.

Take the time to search the forum, we've discussed this at length.
 
I'd like to hear about your case and theory but I ran out of steam by the end of your post. I downloaded one of the files but just scrolling through it felt overwhelming.

Could you provide a brief summary, please? Then people like me could read a big document at their own pace with a summary in mind which would also help to retain what we read.
 
Here’s the hypothesis bits from the introduction from the PDF:
In short: IT'S CAUSED BY DISPLACED AND DAMAGED MUSCLE/FASCIA that are irritating your stellate ganglion both chemically and mechanically, and possibly causing a craniocervical instability like condition (but only a so called “functional instability”, meaning it gets stuck and compressed without obviously visible “structural damage”) further irritating veins and nerves (e.g.: Vagus, Jugular) causing widespread issues.
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BUT YOU DON'T FEEL ANYTHING THERE LOCALLY! It happens while you are coughing (or when you get swollen glands in your neck, in the case of mononucleosis), so IT HAS A PHYSICAL, NOT A BIOLOGICAL ORIGIN…!
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I guess it’s not recognized because you need to take a rare upright MRI, even then THE DISPLACED/THICKENED FASCIA IS BARELY VISIBLE ON ANY MEDICAL SCANS.
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Traditionally fascia was thought of as a simple envelope for muscle fibers providing reduced friction, but recently it has been shown to be highly innervated (actually now considered to be the most sensory organ!) and a potential source of chronic pain, fatigue and dizziness (cervical vertigo)… and even cause emotional alterations!
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