POLL: Is there a lack of permanent damage in ME/CFS that suggests a plausible chance for a cure?

[Jesse2233]

I ask this question from a place of relative ignorance on other long term diseases. I know that in MS for example, there are often lesions in the brain that appear to be irreversible even, in some cases, with HSCT. In my understanding, this doesn't appear to be true in ME/CFS. For example abnormal SPECT scans merely show a lack of blood flow that can (in theory) be corrected during periods of remission. And full recoveries in the RituxME trials (as well as global symptom improvement from spontaneous remission, Ampligen, and mold avoidance) seem to indicate that, at least in some people, damage is not permanent.

Of course there are co-morbidities that can cause structural damage (e.g. heart, bone structure).

A few questions for discussion:

1. Is there truly a lack of non-permanent damage in pure ME/CFS or is this an unfounded assumption that no one really knows the answer to?
   
   
2. Are other long term diseases fundamentally different in the irreversibly of their harm to the body?
   
   
3. What constitutes permanent damage? (e.g. non-regenerative tissue destruction?)
   
   
4. Given medical research and technical advances, how likely is it that the scope of "permanent damage" will become more narrow?
   
   
5. In the context of reversing damage, is the model of "flipping the switch" upstream with healing occurring downstream more plausible than addressing each organ system derangement on its own to cumulatively restore equilibrium?

I've seen these topics briefly addressed on other posts, but not in a dedicated way on one thread.

 

[Sushi]

Is there truly a lack of non-permanent damage in pure ME/CFS or is this an unfounded assumption that no one really knows the answer to?

I really don't think anyone knows at this point. The fact that we sometimes have remissions is very hopeful, but whether there is underlying damage from long-term ME/CFS is probably not something we can answer until we know more about what the disease is.

 

[helperofearth123]

It's a bit philosophical because theres not actually such a thing as permanent damage, any damage from anything can potentially be fixed with enough scientific understanding. But sure in this day and age there are types of damage that are considered permanent, or at least un-fixable in our lifetimes.

From my experience I had a near complete remission after my appendix bust, don't know why, and also another period of feeling great for a few months after some neck massages. So that makes me think there probably isn't permeant damage yet in my case.

However, there are a couple of studies showing people with ME/CFS seem to get cancer or heart failure much earlier than healthy people, which suggests its possible that damage is being done in very long term illness cases. But maybe they can still be cured before its too late the 'damage' causes another illness to appear.

 

[arewenearlythereyet]

I put don't know....I hope there isn't, although there may be some ongoing symptoms that may have an effect (nerve damage etc) if they go on too long? Difficult to say when we don't know what the cure is?

 

[halcyon]

There are definitely physiological changes caused by this disease. White and gray matter loss, wiring changes in the brain, changes in muscle composition and mitochondrial damage, various organ pathologies. None of these are necessarily irreversible though as far as I understand.

 

[keenly]

Dr Cheney
'CFS is not a disease at all but a complex and ancient mammalian adaptation state used to survive an existential threat likely posed in the case of CFS by a loss of redox buffer. As an adaptation state to survive explains the lack of normally common diseases in CFS and the rarity of death and finally, the dauer state is reversible once the core redox threat is removed. The key to improved redox support is NADPH restored predominantly during deep, stage IV sleep'.

 

[Wishful]

In the first few years of this disorder I used to get occasional remissions. They only lasted until the next day, but seemed to be complete remissions. That convinced me that the disorder could be treated, rather than being permanent degeneration. I still think it's a feedback loop, and breaking that loop will restore normal function.

 

[Cinders66]

Looking at the two ends of the spectrum
Those who have ME/CFS short term and recover albeit with risk of remission, permanent damage is likely small or absent.
Those bedridden twenty years where anything makes them worse and are too sick to attend hospitals, permanent damage, in terms of difficult to reverse, much more likely.

I think there's ME the initial disease process caused by the body going wrong in response to a trigger etc , there's then the additional harm caused by exertion which those who are poorly manage or aggressively exercised get in the early stages. People like Montoya are warning people too never exert as it affects chances of recovery so then it seems Drs like him believe the repeated exertion part causes lasting damage in the illness in terms of what's available currently to improve it.

I think this damage aspect is why immune modification seems to work better in the shorter term and lesser ill (just as immune therapies don't work in secondary progressive MS but do in primary)

Even in MS there's looking at ways to reverse the damage - research on mitochondria and scarring etc so whatever damage if it's there in M,E, which might be functional damage e.g. Breakdown in brain connections - rather than something like scarring - could ultimately be treatable.

With ME research is focused on reversing the more easier pure ME, than the more complex severe and entrenched forms. This is unfortunate and unfair in those in that category.

But ultimately we just don't know enough to say if it's really damage and what it is. If there's say ongoing vagus nerve infection that's causing entrenched and severe ME then that could be more treatable. If there's a loop people get into when severe of inflammation, auto immune response that could be treatable by medicatiob when it's simply not reversible with pacing etc. If there's something causing shut down even to the point of almost causing a living death, it could still be reversible if we understood it
However there's also small amounts of autopsy research in the very severe with bad signs neurologically , how much that would be classed as currently irreversible damage I don't know.

Research research research