Does ME/CFS cause permanent damage? Is it a degenerative disease? Discussion thread

[Utsikt]

Yes, there is no proof of degeneration, so far.

But what if it involved a very specific and small cluster of neurons? They could be cells you do not need to survive but without whom these weird symptoms start appearing. Would we find them without extensive post-mortem studies?

Of course, I don't know, but I think this could be one of the hypotheses, once we start thinking ME/CFS as a neurologic disease.

People do not improve or recover to the extent that people clearly do in e.g. Fluge and Mella's studies in degenerative diseases.

How would your own experience of getting better for 12 months track with the idea of irreversible neuron loss causing MECFS?

This is why I can’t get on board with the degenerative hypothesis. I just can’t get it to make sense with the observations, unless you have two different diseases where one is degenerative and the other isn’t, and only the ones without it are the ones that have had improvements.

But you could say that for any hypothesis, so it doesn’t help us get any closer to the answer.

or perhaps it only concerns the most severe cases... the gap is so wide between mild and severe, there may indeed be a loss of neurons in a specific area.

But it really doesn’t add up with having massive improvements in some. I have been close to multiple people neurodegenerative diseases my whole life. I don’t recognise any of that at all in ME/CFS. They understand brainfog, but so did I when healthy at ~6000 meters above sea level - so brainfog doesn’t need damage.

I suspect most pwME would argue it can be degenerative, and at some point (probably early on?) absolutely is - but also in a very peculiar manner, can halt its downward spiral, or continue after the wrong provocation to plummet.

What you’re describing is not degeneration, but deterioration.

It would always look like that downwards trend if it was progressive deterioration, but due to the massive upwards fluctuations in some I sincerely doubt ME/CFS is actually progressive, as in biologically bound to go downwards eventually.

 

[duncan]

What you’re describing is not degeneration, but deterioration.

Maybe.

For those that report sustained improvement, is that improvement back to before symptom onset?

If not, and for those of us who do not truly improve, I'd stick with degeneration without necessarily the implied downward continuum.

Truth be told, the terms are not mutually exclusive and both may apply.

ETA: Degeneration seems to imply permanence. I am permanently less, so, after three decades. that works for me. Barring divine intervention?

 

[Utsikt]

Maybe.

For those that report sustained improvement, is that improvement back to before symptom onset?

Yes, one example is one of the patients in the Dara pilot. They are completely healthy, working full time in healthcare and exercising. They were severe at their worst, but not fully bedbound when starting the pilot.

If not, and for those of us who do not truly improve, I'd stick with degeneration without necessarily the implied downward continuum.

It’s simply not accurate so I wouldn’t use it myself.

Truth be told, the terms are not mutually exclusive and both may apply.

That’s beyond the point when there is no evidence of degeneration of any kind, and plenty of evidence against it. The same goes for ME/CFS being progressive.

 

[Verity]

My brain has degenerated.

It is simply not possible to tell from observing your symptoms that you have a degenerative disease.

Not all illnesses that worsen without treatment are degenerative. I’m sure many of them feel like they are when totally untreated like ME is.

For example, some autoimmune encephalitises are reversible and certainly could be mistaken for degenerative diseases without treatment.

 

[duncan]

It is simply not possible to tell from observing your symptoms that you have a degenerative disease.

Over 30 years? Sure it is. I've steadily seen my IQ drop over the years. The last I checked, it was down 20 points over premorbid levels. Now, it may be fair to claim those are objective tests, but I can feel my Stupid, much as I can the sense of poison that courses through me that no one can capture in any objective lab.

But if you know where to look, and have the right technology, can you actually demonstrate it in pwME? I think you can, but you better be looking hard for it. How many have access to a Tesla 5 or 7? I did, through the NIH, and it repeatedly revealed brain atrophy, albeit subtle. Fortunately, they were looking for something, they just didn't know what. And my results took them off guard.

How many of us recover to healthy status? 5%? Less? We haven't merely deteriorated, we've loss a varying degree of function - forever.

And for a portion of us, that degree, with speed bumps, only worsens over time. It's just the rate that varies when you've that brand.

Fortunately, that is a small portion of pwME.

I deteriorate with the flu. ME/CFS for me was degenerative.

ETA: My wife has ATS. She has seen only one neurologist in the least 30 years. She has forever refused to read the studies, or look at the science. She doesn't want to know. Do you imagine she doesn't for a second know that her body is slowly failing her in a degenerative fashion?

 

[Verity]

Over 30 years? Sure it is. I've steadily seen my IQ drop over the years. The last I checked, it was down 20 points over premorbid levels. Now, it may be fair to claim those are objective tests, but I can feel my Stupid, much as I can the sense of poison that courses through me that no one can capture in any objective lab.

But if you know where to look, and have the right technology, can you actually demonstrate it in pwME? I think you can, but you better be looking hard for it. How many have access to a Tesla 5 or 7? I did, through the NIH, and it repeatedly revealed brain atrophy, albeit subtle. Fortunately, they were looking for something, they just didn't know what. And my results took them off guard.

How many of us recover to healthy status? 5%? Less? We haven't merely deteriorated, we've loss a varying degree of function - forever.

And for a portion of us, that degree, with speed bumps, only worsens over time. It's just the rate that varies when you've that brand.

Fortunately, that is a small portion of pwME.

I deteriorate with the flu. ME/CFS for me was degenerative.

But you could say these sorts of things about illnesses that we know are not degenerative. I’m not seeing the connection. I was in graduate school when I got sick and have felt very stupid compared to my past self for years! But I started Ritalin recently and regained lot of cognitive function.

I am not sure how interpretable one test showing brain atrophy is. Someone else can weigh in if they think it’s really definitive.

(I think we’d better take this to a different thread if we want to discuss whether ME is degenerative because it may be getting off track here.)

 

[duncan]

But you could say these sorts of things about illnesses that we know are not degenerative. I’m not seeing the connection. I was in graduate school when I got sick and have felt very stupid compared to my past self for years! But I started Ritalin recently and regained lot of cognitive function.

I am not sure how interpretable one test showing brain atrophy is. Someone else can weigh in if they think it’s really definitive.

(I think we’d better take this to a different thread if we want to discuss whether ME is degenerative because it may be getting off track here.)

What percent of us return to our premorbid levels? We don't.

So perhaps the initial insult caused mci, or other damage, and then we level set. Maybe.

But I feel worse, and that's my metric after studying all these studies about so many of us and folk like us for far too many years.

BTW. I've three MRIs that show atrophy.

 

[duncan]

Now, it may be fair to claim those are objective tests, but I can feel my Stupid, much as I can the sense of poison that courses through me that no one can capture in any objective lab.

I have to admit to both @Verity and @Utsikt that's a dubius scientific method I am embracing.

 

[MrMagoo]

I have to admit to both @Verity and @Utsikt that's a dubius scientific method I am embracing.

One which many “researchers” would do well to check themselves for…

 

[AliceLily]

For myself I don't feel like there is brain atrophy for the reason that when I had Covid in 2024 my brain felt clear for that first week. About the 8th-10th day I felt the heaviness of the brain fog shifting back in, and it was heavy.

It feels to me that something tripped me into brain fog and locked the door until something like a cold/Covid unlocks temporarily and then the trip happens again back to brain fog.

 

[Sean]

Recovery is rare. It seems to me that it happens mostly within the first years from onset. We may have insufficient data on those who recover, though.

Seriously complicated by it being unclear how 'recovered' those reporting recovery actually are, and if they are really completely free from the disease process.

We do indeed have a major data deficit on this question.

He mentioned that he has elevated ALP (Liver-related enzyme).

I have that. Consistently high ALP, every single time it has been measured since at least from when I was first diagnosed in 1989 (including standard annual bloods). Don't know about before then. It is the only consistently abnormal lab marker that has showed up in all that time, including other liver function tests.

What, if anything, it has to do with ME/CFS I have no idea. No doctors have thought it important enough to follow up. *shrugs*

 

[neophyte32]

It might not be degenerative by any standard definition, but some threshold of insults is eventually met and that puts our body and brain into an pathogenic state that is really hard to recover from

A threshold of aggression, but without lesions... I know that on my end (bedridden for 16 months and intolerant to screens and pretty much everything else), I pushed myself too hard since the illness resurfaced in 2023. I pushed myself to the limit... I still don't understand what form the damage could take to remain like this, probably for life. After all, Paolo doesn't rule out destroyed neurons in certain areas, if I understood correctly.