Is there any major research/treatment/funding update to be hopeful about?

[Why_M.E.]

Hi!
I didnt follow the me/cfs research scene for 1 year now.
Is there any news of me/cfs research/treatment/funding to be hopeful about?
I heard about BC007 trial for me/cfs.
Anything else out there?

 

[Pyrrhus]

...Two current hot research topics are neuroinflammation and dysautonomia...

 

[CSMLSM]

Neuroinflammation is my hot pick as new imaging is allowing us to see once what was not seeable and the recent EBV virus research across many diseases and other Post Viral Condition causing viruses that trigger immune dysfunction and inflammation.

I would personally see Dysautonomia as a result of the ME/CFS progression (likely Vit B12 issues) and not the beginning of the etiology. This is my personal opinion though.

I myself seem to have a different view point to many so take what I say with a pinch of salt.

 

[Rufous McKinney]

I would personally see Dysautonomia as a result of the ME/CFS progression (likely Vit B12 issues) and not the beginning of the etiology. This is my personal opinion though.

I'd agree with that...based upon my own experience. I rather abruptly developed tachycardia and blood not returning, during a three month visit to my daughter.

But over time, many dysautonomic issues seem to have arisen.

 

[vision blue]

Anything new from "Dr. Newton" that Cort Johnson talked about 8 years ago?
https://www.healthrising.org/blog/2...-muscles-chronic-fatigue-syndrome-reversible/

Seems to link the muscles issues with dysautonomia. The link to the page he has of a list of her studies is now a dead link and on her webite, list of "selected projects" does not mention cfs. I have not tried searching for her publications.

I wonder how long a person can have dysautonomia before having symptoms from it. I had life alterning fatigue for a very long time before a virus (or series of 2 viruses in close proximity) triggered/caused symptomatic dysautonomia. Did i have it all along or did i truley only get proper ME after the new virus? (given the claim that 90 percent of those with cfs/me have autonomic dysfuntion).

 

[Rufous McKinney]

Did i have it all along or did i truley only get proper ME after the new virus? (given the claim that 90 percent of those with cfs/me have autonomic dysfuntion).

I feel like these kinds of statistics and claims are pretty iffy. First we have a largely undiagnosed disease, we keep hearing. While I have a diagnosis, the system really has never diagnosed much of anything in my case following anything procedural.

Whats up with my husband? totally mysterious. Why is your body a pretzel? He doesn't know. I figure out he has all these Scandinavian genetic issues. Funny, does our doctor? Does my husband?

CFS is we don't even know whats that exactly.

Whats mild ME? I had something...along those lines...for 54 years.

I recall this numbness in my right hand and right foot (it corresponds) has been the case for oh maybe 20 years, when I only got much worse four years ago. I blamed the mouse. So why my foot? No the mouse (mouse exacerbated the yucky hand feeling).

My fingerprints have been gone for a very long time now...10, 15 or more years.

Need to dig out a really old notebook to see what I told myself.

 

[VisualEffect]

Neuroinflammation is my hot pick as new imaging is allowing us to see once what was not seeable and the recent EBV virus research across many diseases and other Post Viral Condition causing viruses that trigger immune dysfunction and inflammation.

I would personally see Dysautonomia as a result of the ME/CFS progression (likely Vit B12 issues) and not the beginning of the etiology. This is my personal opinion though.

I myself seem to have a different view point to many so take what I say with a pinch of salt.

My first symptom was orthostatic intolerance. I don’t know if I have PEM or not, because I can physically strain myself and on the other day my symptoms are not exacerbated. I feel the same with or without exercise. The only thing that helps is lying down and avoiding high hr spikes. Sympathetic nervous system is overreacting on something like standing up, walking, emotional stress and other things.
I don’t understand if it’s progressive or not in nature. Disease pattern is stable and if my sympathetic system is overdriven for too long, I get wired feeling.
I don’t see my disease as something medically unexplained and mysterious nonsense, because it’s obvious that if my SNS is always activated, I can’t feel myself like a normal person. Fatigue, wired feeling, heart pounding, sometimes dizzy, everything is explained by ruined ANS.

 

[Rufous McKinney]

everything is explained by ruined ANS.

whats ANS?

I think we vary in what we focus on. Everybody on a path...lead us to this shared experience but we seem to have all gotten here via various means.

So you've got a great grasp of all this sympathetic business which my brain entirely ignores. Thats just me, as I'm ignoring ALOT.

I"m barely surfing this ditty. The wave is big, and I could fall off soon.

I had this one degree fever the other afternoon/ plus PEM ridden.

Yesterday I stood up and sort of semi fainted. (thats not typical here)

I'm now without a BP cuff that works. I'm going backwards, when forward is the plan.



this week was: get something to happen.

Today is: Friday

 

[Boba]

My first symptom was orthostatic intolerance. I don’t know if I have PEM or not, because I can physically strain myself and on the other day my symptoms are not exacerbated. I feel the same with or without exercise. The only thing that helps is lying down and avoiding high hr spikes. Sympathetic nervous system is overreacting on something like standing up, walking, emotional stress and other things.
I don’t understand if it’s progressive or not in nature. Disease pattern is stable and if my sympathetic system is overdriven for too long, I get wired feeling.
I don’t see my disease as something medically unexplained and mysterious nonsense, because it’s obvious that if my SNS is always activated, I can’t feel myself like a normal person. Fatigue, wired feeling, heart pounding, sometimes dizzy, everything is explained by ruined ANS.

It was also pretty hard for me to relax and not be tensed. My sns was active all the time until one pint where a bout of stress turned it fully on. Felt wired and poisoned all the time. I hope our ANS can heal once our body is able to produce energy again.

 

[VisualEffect]

whats ANS?

I think we vary in what we focus on. Everybody on a path...lead us to this shared experience but we seem to have all gotten here via various means.

So you've got a great grasp of all this sympathetic business which my brain entirely ignores. Thats just me, as I'm ignoring ALOT.

I"m barely surfing this ditty. The wave is big, and I could fall off soon.

I had this one degree fever the other afternoon/ plus PEM ridden.

Yesterday I stood up and sort of semi fainted. (thats not typical here)

I'm now without a BP cuff that works. I'm going backwards, when forward is the plan.



this week was: get something to happen.

Today is: Friday

ANS is Autonomic Nervous System

 

[overtheedge]

This site https://www.healthrising.org/ posts promising new stuff all the time, I check it every few days, haven't noticed any massive funding improvements but there are developments to be hopeful for such as this https://www.healthrising.org/blog/2022/05/06/nath-intramural-study-exercise/ which may produce treatments