Reason for ME / Cfs

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Hello my friends,

So at first this is only my opinion. Im not an official doctor. Im just DrUniverse.

So its pretty simple, its not even my own theory.
Just read this.

https://pubmed.ncbi.nlm.nih.gov/31824487/

Im 100% this is the cause.
Long story short.

"we illustrated that mild infections might lead to a chronically activated immune responses under control of Tregs if the responding clone has a high autoimmune potential. Such infections promote persistent inflammation and possibly fatigue. We then hypothesized that ME/CFS is a condition characterized by a predominance of this type of infections under control of Tregs. "

So basically the immune System supresses itself through Tregs. It supress too much and cant get ride of the Infection.
There we are trapped :D

And, well the Symptoms are just a Chronic Infection with some Auto immune parts like anti bodies for example against b adrenergic and/or muscarinic cholinergic receptors.

Regards
DrUniverse
 

linusbert

Senior Member
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i am 100%-1 sure that there is no single reason.

i've read of cases where people had weak neck and after OP they went from bad to healthy.
same for some food intolerances.
also there are lots of metabolic genetic diseases which can be treated by like enzymes or even vitamins. those can go from wheelchair to fine in rare cases.
so there is much i believe which can contribute to this besides infections.

but sure, infections might be a reason for a lot.

therefore i do not like the idea when researches try to find THE one single cause for CFS. i believe it is and should stay a syndrome and then doctors go out to search for the specific reason(s) which might result in the CFS syndrome.

what i think medical scientific community should do is take all CFS cases serious. do collect all possible reasons which can result in CFS and then create guidelines to check and treat for each of them.
if they still cannot fix/narrow down the issue, they have a new cause to search for. never should a cfs patient be treated like its psychosomatic as it basically never is.
 
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You are right.
But for me their exist an original ME /CFS.
There are a lot of Sub groups for sure , but i would say the Infection Group is the biggest.
I only speak for this group.
 

hapl808

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Yes, personally I think ME/CFS is likely a bucket for many diseases with many different triggers, genetics, etc. My own guess is that PEM is partially what distinguishes ME/CFS from other types of fatigue related disorders, but we may find in the future that PEM is just a symptom. Like there are a lot of reasons you might get migraines I think. The symptom itself might be remarkable, but likely doesn't just have one underlying cause.

That said, I personally seem to be in the viral onset category. Clear illness started the day I got sick in SE Asia and has continued in some form or other for the past 20+ years. Anti-pathogen treatments have generally been the only things that have helped me, but all that I've tried seem quite limited.
 

Wishful

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I'm certainly not a supporter of that theory. I believe that immune activation events, whether microbial infection, tissue damage, or some other cause, triggers the ME state, which is some biological feedback loop. Subsequent infections or chronic infections can add to the severity of the ME symptoms, but even if you wiped out all the infections, the patient might still suffer the ME symptoms.
 
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I'm certainly not a supporter of that theory. I believe that immune activation events, whether microbial infection, tissue damage, or some other cause, triggers the ME state, which is some biological feedback loop. Subsequent infections or chronic infections can add to the severity of the ME symptoms, but even if you wiped out all the infections, the patient might still suffer the ME symptoms.
Lol so you just said what the theory is saying.
 

hapl808

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I know you are all not ready for this :D
Believe what you want to believe.
Not ready for which? Maybe I'm misunderstanding, but chronic immune system activation, CD4 issues, etc - haven't all these been a major subject of research and hypotheses for decades? Is any of this actionable, even just for definitive diagnostics, let alone any treatment targets? What do we want to believe? I think viral onset is a likely trigger for many people - so how do we treat that?

https://pubmed.ncbi.nlm.nih.gov/15345193/ (Similar stuff from 2004?)

Or is there some distinction between Treg and Th and such that is relevant here that I'm missing? Which I'd say isn't really simple.

I can't say I have any real understanding of the immune system, but I'm pretty sure neither do researchers or we'd be cured by now. :)
 
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So basically the immune System supresses itself through Tregs
This theory has been around for awhile. See for example: https://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.1006.7723&rep=rep1&type=pdf ("Cimetidine, Ranitidine, and Epstein-Barr Virus Infection "). There are threads on here about cimetidine (tagamet) which inhibits Tregs and can induce dramatic reduction of symptoms in some CFS patients. (For me, it only works for a day or two, then makes me feel much worse)
 
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This theory has been around for awhile. See for example: https://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.1006.7723&rep=rep1&type=pdf ("Cimetidine, Ranitidine, and Epstein-Barr Virus Infection "). There are threads on here about cimetidine (tagamet) which inhibits Tregs and can induce dramatic reduction of symptoms in some CFS patients. (For me, it only works for a day or two, then makes me feel much worse)
Yeah Goldstein had a few Patients which were "cured" in a few days with cimetidin / rani.
The Problem is H2 Receptor Antagonist have a lot of side effects because Histamine is needed for normal body function.
 

linusbert

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I know you are all not ready for this :D
Believe what you want to believe.
i am ready to try anything if there is a affordable treatment.

The Problem is H2 Receptor Antagonist have a lot of side effects because Histamine is needed for normal body function.
i once tried ranitidine, helped me a lot with stomach problems which i guess were triggered by food allergies.
the usual proton pump inhibitors did nothing for me.
sadly ranitidine isnt available anymore in germany :(.


i have another weird thing going on, when i do things which worsen my asthma and allergies like lots of histamin, my main symptoms which are muscular are getting much better. that means less cramping and exhaustion. its insane.
at the same time i suffer a lot of cough, slight breathing problems and general discomfort due to itching and coughing. also my diabetes worsens after those episodes. blood sugar is much increased.

i got something similiar once when i slightly supposedly broke my legs after a fall. i got huge boost in strength and well beeing even without worsening of asthma - for like a few days. i guess it was the adrenaline rush. it made me feel so good while at the same time having pain. i had this inner peace and my muscles were relaxed it was incredible. one might think, but hydrocortisol does nothing for me.