ME as a permenant damage to the central nervous system

[Dysfunkion]

I agree with BrightCandle: I've had my ME abruptly switch from full ME to full non-ME over the space of minutes, which is strong evidence that there isn't permanent damage involved. I've also had abrupt switches from long periods of just dragging myself around, to feeling energetic enough to go for multi-hr hikes (but not fully non-ME), which also doesn't fit the theory of permanent damage.

I think ME involves a feedback loop with a positive value. Switch that to a negative value and the system returns to normal.

Yeah see this is the thing, I have like a mentioned had "winning the lottery" rare windows where I went into near complete remission but after that things rapidly set back into a specific range and mode of functioning where I'm stuck again. When I'm back into being stuck in my usual states of functioning like I said I can feel the specific neuro pathways that are going wrong but am hopeless to do anything about it, it's as if there is a wrong set path for the way my brain processes information but it's actually possible to break out of it and return to normal. that is probably the best way I can describe what it's like.

 

[Cloudyskies]

I agree that it’s the Central Nervous System, but I don’t agree that it’s permanent damage. I believe what the experts say, that it is reversible. I don’t know why they’re all not studying the CNS involvement because, like you, I think it’s the driver of this illness.

 

[Davsey27]

When im referring to permanent damage what i mean is that even if one goes into remission this doesn't mean they necessarily go back to their Pre-ME functioning levels

This is why I'm curious if for many there may be permentant damage

 

[Cloudyskies]

When im referring to permanent damage what i mean is that even if one goes into remission this doesn't mean they necessarily go back to their Pre-ME functioning levels

This is why I'm curious if for many there may be permentant damage

I truly don't think so. I think permanent damage would be for a very small minority. This is a completely reversible illness.

 

[Wishful]

When im referring to permanent damage what i mean is that even if one goes into remission this doesn't mean they necessarily go back to their Pre-ME functioning levels

During my temporary remissions, I seemed to return to full non-ME levels. Actually higher, since it's such a relief to lose all those symptoms. An important point is that this return to normal levels happens very abruptly (space of minutes, not hours), so it's not a matter of cells or organs having to rebuild themselves. I think of it as a chemical switch: ME keeps some cells (likely brain cells) in an abnormal state via some ratio of chemicals, and applying the right chemical at the right place switches those cells back to normal functioning. If your ME is keeping you from exercising, you'll have some deconditioning, but that's a long-term effect of not exercising, rather than a direct effect of ME.

 

[cporro]

i'm on the page (right now) that this is chronic brain inflammation. inflammation means immune system to me. only one thing has dramatically helped me for a long (>3 months) period of time. this was wellbutrin (bupropion). the common theory on depression says these drugs work by changing neurotransmitter levels in synapses. i think this is wrong. new studies are saying this is not supported. i think (and some science says as much) that wellbutrin is dramatically decreasing tumor necrosis factor-alpha, interferon-gamma, and interleukin-1 beta. in other words brain inflammation. but how do you measure brain inflamation or biomarkers of brain damage? imaging? blood tests?

So i'm looking at things that reduce brain inflamation or encephilitis etc. i suspect that the initial injury occured in childhood. i've been differnt a long time. learning issues. memory issues. depression. but the last 5 years have gotten worse to the point of frequent disabling fatigue. i don't see this as a new thing. i see it as getting older with an existing problem.

like many i have ups and downs. at some periods i feel almost normal. but less and less as i get older. it seems reasonable to think these periods can be sustained. ? what causes them? is it a natual cycle? is there a trigger? i can't figure it out.

 

[Dysfunkion]

i'm on the page (right now) that this is chronic brain inflammation. inflammation means immune system to me. only one thing has dramatically helped me for a long (>3 months) period of time. this was wellbutrin (bupropion). the common theory on depression says these drugs work by changing neurotransmitter levels in synapses. i think this is wrong. new studies are saying this is not supported. i think (and some science says as much) that wellbutrin is dramatically decreasing tumor necrosis factor-alpha, interferon-gamma, and interleukin-1 beta. in other words brain inflammation. but how do you measure brain inflamation or biomarkers of brain damage? imaging? blood tests?

So i'm looking at things that reduce brain inflamation or encephilitis etc. i suspect that the initial injury occured in childhood. i've been differnt a long time. learning issues. memory issues. depression. but the last 5 years have gotten worse to the point of frequent disabling fatigue. i don't see this as a new thing. i see it as getting older with an existing problem.

like many i have ups and downs. at some periods i feel almost normal. but less and less as i get older. it seems reasonable to think these periods can be sustained. ? what causes them? is it a natual cycle? is there a trigger? i can't figure it out.

In general everything that takes an inflammatory load off the brain or muscles to me helps, I don't react well to everything and supplementing is a minefield but the general theme is that if it dose that and/or gives my body more raw resources to burn (for example I can't live without methyl-b12 in relatively high doses).

I also have those same up's and down's. I can find base triggers and chain reactions happen so quickly in my body that things can get out of hand and hard to decipher at times. I know for a fact that adverse childhood experiences played a huge role in how bad things got today. I am still have the same trauma responses today that I did then only today they are way more destructive to my physical health. One of my huge one's is the head and facial tension from the feeling of being under threat in public, it can get so bad that my brain will just freeze up. I'll look like a robot with a solidified face when it gets severe and memory/;earning/emotions/memory/speech will go all out the window. There's nothing that can stop it either besides time away from all stress once it gets to a certain point. I have a million triggers that lead to it. It's essentially the final boss of my CPTSD symptoms, if I could get my brain to stop doing that I know I'd have a lot less issues.

 

[gregh286]

Hi
Yes I would go with that....a persistent immune based inflammatory cycle with overwhelming fatigue. I don't think it's permanently damage the cns....becusse I also get sporadic recoveries to near normal
I can control my cfs symptoms with diet......so certainly its what we put into ourselves can have 100% impact.

 

[Wishful]

but how do you measure brain inflamation or biomarkers of brain damage?

There are various methods, each with limitations. There have been studies about brain inflammation in ME, but so far without conclusive results. There's no "red flag" markers, such as "all PWME have elevated cytokine x". I think even the PET scans of glial activity aren't conclusive. This could mean that "brain inflammation" isn't the cause of the symptoms, or just that the scans aren't looking for the right factors.

Also, while many PWME might report some benefits from anti-inflammatory treatments, I haven't seen any study that shows that anti-inflammatories are reliable treatments for ME. If they only provide limited benefits for a small subset of PWME, that is evidence that ME is not as simple as "brain inflammation".

That doesn't rule out involvement of glial cells. I expect there are a large number of possible dysfunctions that affect cells while not registering as classic inflammation. It may be hard to measure the density of a specific type of transport channel in a glial cell's membrane, but maybe a 5% change in that density is enough to cause the symptoms we feel. Likewise for the rate and length of processes (sensory tendrils): maybe 5% reduction is enough to make us feel lethargic and brainfogged. That's the kind of research I'd like to see, rather than yet another study of cytokine levels in blood.