Could ME/CFS be a part of CSF

[SWAlexander]

or have the credentials to get funding for a difficult-to-do study that breaks new ground?

How sad.

 

[Consul]

New hypothesis paper

https://www.preprints.org/manuscript/202305.2264/v1

 

[Rufous McKinney]

New hypothesis paper

I like

One aspect of this entire mess is a "structural" problem,...I am convinced that somehow, structure breaks down...impeding FLOW.

Some of the structural problem is influenced by our messed up neurology and other aspects are perhaps linked to collagen and connective tissue issues.

 

[lenora]

I'm just starting a book by Abraham Verghese, M.D. This is a very large book and I can't hold it, so for the first time I'll be tuning into the audio version.

Anyway, in the Forward, he mentioned training in the U.K. and how doctors there still rely on percussion. It's true.....I haven't had that done in many years. Too much time is spent on tests, and not enough with and on the patient himself/herself.

It took him many years to become a doctor, but he's in tune with the body and all of his books are very interesting to read. Not just medical for sure....but you can tell that he likes people. Anyway, it would be great to have a doctor perform percussion on me once again. I'm old enough that I can remember it being a diagnostic tool. At least you feel that the doctor is working on you....instead of waiting for a machine to do so. Yours, Lenora

 

[Wishful]

Some of the structural problem is influenced by our messed up neurology and other aspects are perhaps linked to collagen and connective tissue issues.

I posted a thread about glial fibrillary protein, which is produced in glial cells and connective tissue cells, as well as bone, spinal cord membrane and some other areas. That doesn't prove a link, but I think it's at least worth considering. If the proteins were being constructed wrong, that might cause dysfunction in all those areas.

 

[YippeeKi YOW !!]

@Jyoti

There's a specialist in this field based in Barcelona. His name escapes me at the minute. Anyway, I had an MRI scan in London. Then the specialist in Spain studied my scans and his view was, in his opinion, that although my scans weren't 100% how they should be, he didn't think they are the cause of my symptoms. I do have some cracking in my neck when I turn my head.

Any thoughts??

 

[YippeeKi YOW !!]

Yet another reason for not studying the root cause: it might lead to a cure, while studies of downstream symptoms might lead to marketing profitable 'rest of your life' treatments. Yah, I'm in a cynical mood.

Right there with you . In fact, I brought popcorn and a couple of folding chairs so we can watch the machinations in comfort ...

 

[Oliver3]

Wishful
Would you say glial activation is the main diagnosis for ME?
How does this explain muscle weakness?

The tissue is the issue. Everything else follows that. Everyone I know with eds has all the issues of pots, OI, ADHD, autoimmunity, anxiety, cervical instability. Just me by another name. Once the cell danger response is activated, that's it, were stuck in the cycle. Viral reactivation is common and more damaging to us than a tissue normative person.

 

[Rufous McKinney]

The tissue is the issue. Everything else follows that.

yeah- all that, too. I am without fingerprints, my neck is unraveling and really frankly THE NECK INSTABILITY is probably why I continue to get worse. And I blame viruses, or my spinal birth defects. Oh yeah, and my immune system was messed up at Year 1.

 

[Oliver3]

I like

One aspect of this entire mess is a "structural" problem,...I am convinced that somehow, structure breaks down...impeding FLOW.

Some of the structural problem is influenced by our messed up neurology and other aspects are perhaps linked to collagen and connective tissue issues.

That's in in a nutshell.
The foundations to this are tissue based.
I'm hoping crispr can change that for us.
Sure we may get stuck in a metabolic trap, but it's downstream of the initial " weakness", vulnerability.
The ADHD, brain hyperactivity, well it's enough to slow down many a strong person.
My brother has that same issue.BUT he doesn't have the same collagen issues.
He gets severely run down through his work.
But like a jack in a box , he springs back up after a days rest and is back jogging.
It amazes me. He definitely has that autistic racing mind thing that I do, maybe not quite as intense, but enough to exhaust him

But he just bounces back. You can see the collagen difference just to look at us.
Our frames, the texture of our skin.
The way we deal with viruses.

Im not a scientist ( lol) but I intrinsicly feel this to be true

 

[Wishful]

The tissue is the issue.

Ah, but which tissue? Connective tissue doesn't seem to be the core problem in ME, because many of us don't have that. ME might cause connective tissue dysfunction, which in turn causes a bunch of symptoms, which in turn can feed back to the core problem, or worsen other symptoms.

I tried to see whether there was any known connection to loss of fingerprints and GFAP, but didn't find any. I thought it was interesting that GFAP is activated by some immune chemokines (NFK and JAK2). So it's at least possible that ME's messed up immune response could affect the properties of collagen, in addition to altering glial function.