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

J

jaded

Senior Member (Voting Rights)
Posts moved from Long Covid in the media and social media

I wanted to refer back to the article on page 6 of this thread that’s been on my mind lately and quoted below.

Avi Nath mentions there’s already been damage in ME/CFS which is hard to reverse.

This has affected me negatively about whether a future treatment will be of help. My idiopathic SFN and PoTS/ME has significantly progressed since a covid infection/vaccine in December 2022 and my severe pain has spread to my chest and trigeminal nerves and I’m constantly nauseous and dizzy with vestibular migraines that I didn’t have prior to the infection. As I’m declining and suffering greatly this article has really affected me.

Does he have evidence yet of CNS damage? I wonder what he’ll publish in the intramural studies.

Article:

Scientific American has an article about Long Covid which includes a section on ME:

Long COVID Now Looks like a Neurological Disease, Helping Doctor to Focus Treatments

Quote:

Nath, who also studies ME/CFS, says that “we think mechanistically they are going to be related.” Researchers suspect that ME/CFS, like some cases of long COVID, could be autoimmune in nature, with autoantibodies keeping the immune system activated. ME/CFS has been difficult to study because it often arises long after a mild infection, making it hard to identify a viral trigger. But with long COVID, Nath says, “the advantage is that we know exactly what started the process, and you can catch cases early in the [development of] ME/CFS-like symptoms.” In people who have had ME/CFS for years, “it's done damage, and it's hard to reverse that.” Nath speculates that for long COVID, if doctors could study people early in the illness, they would have a better chance of reversing the process.
 
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jaded said:
I wanted to refer back to the article on page 6 of this thread that’s been on my mind lately and quoted below.

Avi Nath mentions there’s already been damage in ME/CFS which is hard to reverse.

This has affected me negatively about whether a future treatment will be of help. My idiopathic SFN and PoTS/ME has significantly progressed since a covid infection/vaccine in December 2022 and my severe pain has spread to my chest and trigeminal nerves and I’m constantly nauseous and dizzy with vestibular migraines that I didn’t have prior to the infection. As I’m declining and suffering greatly this article has really affected me.

Does he have evidence yet of CNS damage? I wonder what he’ll publish in the intramural studies.

Article:

Scientific American has an article about Long Covid which includes a section on ME:

Long COVID Now Looks like a Neurological Disease, Helping Doctor to Focus Treatments

Quote:

Nath, who also studies ME/CFS, says that “we think mechanistically they are going to be related.” Researchers suspect that ME/CFS, like some cases of long COVID, could be autoimmune in nature, with autoantibodies keeping the immune system activated. ME/CFS has been difficult to study because it often arises long after a mild infection, making it hard to identify a viral trigger. But with long COVID, Nath says, “the advantage is that we know exactly what started the process, and you can catch cases early in the [development of] ME/CFS-like symptoms.” In people who have had ME/CFS for years, “it's done damage, and it's hard to reverse that.” Nath speculates that for long COVID, if doctors could study people early in the illness, they would have a better chance of reversing the process.
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I would think ME/CFS is reversible with the right drug (which may not exist yet). Ron Davis also believes this. (He said in one of his research update videos). However, Dr. Nath is privy to the results of the intramural study, which has yet to be published. Perhaps he has strong evidence this is true. Or perhaps this is just his opinion, which would be less concerning.
 
RedFox said:
I would think ME/CFS is reversible with the right drug (which may not exist yet). Ron Davis also believes this. (He said in one of his research update videos). However, Dr. Nath is privy to the results of the intramural study, which has yet to be published. Perhaps he has strong evidence this is true. Or perhaps this is just his opinion, which would be less concerning.
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It's perfectly possible that he hasn't found a way (yet), but that someone else might.
 
To me it doesn’t make sense how he thinks long covid if caught early on can be reversible yet ME/CFS can’t. They have no treatments yet for long covid so if it’s the same/similar mechanism then surely all the people currently with long covid will also be “damaged” if the disease process goes on for long enough (which isn’t quantified yet) according to Nath. I don’t think he should have made a comment like this without evidence as it’s unfair to the ME/CFS community.

I have had neurologists speculate in the past that my autonomic dysfunction may be some kind of neurological damage. From what I’ve heard some patients with long covid PoTS have improved/recovered which again questions if the disease is irreversible or a reversible “dysregulation”.
 
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RedFox said:
I would think ME/CFS is reversible with the right drug (which may not exist yet). Ron Davis also believes this.
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There have also been spontaneous remissions for pw/MS, but from I've read is that it occurs in the earlier stages of relapse/onset from early intervention with disease-modifying agents.

Ron Davis believes that ME/CFS can be cured because a few people who were diagnosed with ME/CFS may have had a spontaneous recovery b/c they were determined to rest for a year to prevent crashes.
 
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My temporary remissions convinced me that ME is not only possibly curable, but it can be reversed rapidly (within hours) and completely; it's like flipping a switch between 100% ME and 0%. There might be some long-term harm from some downstream effects of ME, but not necessarily anything worse than from any other debilitating medical conditions.

My truck was suffering from poor engine performance (very ME-like). Replacing a failed spark plug wire fixed the problem completely. I picture ME's core dysfunction as similar to that wire, although maybe it's more like a very dirty wire bleeding off the ignition pulse, and just needs cleaning (using the proper chemical). FWIW, I looked at a lot of other possible causes before even thinking about testing those wires, and the spark plug fed by that wire didn't show abnormal carbon build-up, and ME's dysfunction might be similarly difficult to find. When they do find the true cause of ME, there might be a lot of "Oh, that's so obvious ... now." and probably a lot of angry denial of reality from people who will look bad for not finding it sooner.
 
Creekside said:
My temporary remissions convinced me that ME is not only possibly curable, but it can be reversed rapidly (within hours) and completely; it's like flipping a switch between 100% ME and 0%. There might be some long-term harm from some downstream effects of ME, but not necessarily anything worse than from any other debilitating medical conditions.
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Same here, literally like a switch. I have no idea why Nath is making these reckless statements scaring people. The whole “problem” with ME/CFS diagnosis is that there’s no obvious damage you can point to, hence why most think we’re faking it.
 
jaded said:
This has affected me negatively about whether a future treatment will be of help.
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I'm really sorry you are suffering so much @jaded & i can understand why this comment from a researcher could be upsetting.

But honestly i would take any opinion of any researcher with a pinch of salt. It really irritates me the way they make these off the cuff statements with little thought for how they affect us.

I have read so many pronouncements from researchers over the years that if i believed every one i'd have been alternately on cloud nine expecting a cure one month, and expecting to never recover & die early the next month. That's obviously an over simplification and a slight exaggeration, but they speculate in public so often that nowadays I just let it wash over me and dont let any of it 'stick' in my mind because it's all just all supposition and conjecture.

The bald truth is we dont know. Nath doesnt know, nobody knows. Nobody knows the mechanisms nobody knows the aetiology, and their conjecturing in this way is so unhelpful.

I know its impossibly hard to ignore such statements when you're suffering and desperate, but i hope you'll be able to let it go a bit. If we believed everything that was pronounced by a researcher... well, we'd all either be buying new running shoes & booking our celebratory recovery parties or jumping off a bridge at the thought of never getting better.
 
I have no idea if Nath is correct. I think the real answer at this point is that we just don't know.

That said, as a very long term patient (4 decades) I have – slowly, reluctantly, and painfully – come to terms with the very real possibility that there may not be any effective treatments available in what remains of my expected lifetime (15-20 years), or if there are that they may not be effective (or as effective) for long term patients.
 
Some people do spontaneously recover (I believe more than we think, because many of them haven't been sick enough long enough to know they have ME), which makes it seem unlikely that there is serious permanent damage. And people get significantly better or worse over time. You'd think if ME was due to some permanent damage, you'd see a general declining trend or, at best, staying the same. Lots of diseases work like this, but I don't think ME does — far too many people get significantly better. Unless Nath has some evidence in his back pocket, I'd just assume he's guessing.
 
I don't know if anything is permanent or even damaged. Whatever process is amiss, though, needs to be remedied.

For me, if there's a priority, it's fixing my brain. The headache, the balance, the Stupid.

Unfortunately, I keep hearing that bit by Ron White, You Can't Fix Stupid. It still makes me chuckle.
 
I also think generally yes, unlikely long-term major damage. Patient stories are suggestive of a switch, at onset and offset.

But I'd leave a proviso for things like endothelial dysfunction if it is a generalised component. That's unlikely to cardiovascularly neutral over time. Picking out accelerated detrimental effects may be hard though: in both recovered (say after 3yrs) and unrecovered, given how common CV disease is in the general population.
 
Posts have been moved from Biological Insights from Genome Wide Association Studies and Whole Genome Sequencing of ME/CFS, 2026, Maccallini

paolo said:
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.
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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?
 
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V.R.T. said:
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?
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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.
 
neophyte32 said:
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.
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But again, you've got people who improve from severe or very severe to moderate or mild, like the prominent German advocate Martin (pausedME is his username in various places i think) you've got people like me who improve back to the top end of severe from borderline very severe and highly sensitive to all stimuli. You have many case studies and reports of severe people who are much better after x or y drug. So even if those drugs don't work, those people really improved. If severe symptoms were caused by irreversible neuron loss that wouldn't happen.

I suppose until we know the mechinism enough for effective treatments to be developed there is always a possibility of the whole permanent untreatable thing, but I'm not sure I buy it.
 
V.R.T. said:
But again, you've got people who improve from severe or very severe to moderate or mild, like the prominent German advocate Martin (pausedME is his username in various places i think) you've got people like me who improve back to the top end of severe from borderline very severe and highly sensitive to all stimuli. You have many case studies and reports of severe people who are much better after x or y drug. So even if those drugs don't work, those people really improved. If severe symptoms were caused by irreversible neuron loss that wouldn't happen.

I suppose until we know the mechinism enough for effective treatments to be developed there is always a possibility of the whole permanent untreatable thing, but I'm not sure I buy it.
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I've talked to Martin privately on Twitter a lot, and I know about his treatment. Huge doses of pregabalin every other day, and very high daily doses of lorazepram. He added lamotrigine a few months ago. He's a very rare example of someone with very severe symptoms who has recovered (he fluctuates between mild and moderate now). The treatment is very, very heavy and dangerous in the long term, he knows it.

You're right, there's no proof of neuronal damage. Paolo doesn't know either, but he doesn't rule out the possibility.

LDA helped me go from 300 steps (I'm back to that unfortunately) to 1700 steps for 5 months without too much trouble, with no sensitivity to light, etc. The effect was too short-lived... I'm trying again after a two-month break, but well... it doesn't seem to be working again.

Yes, there's definitely something possible. We are still a long way from knowing, but perhaps with people like Paolo and Edwards we will eventually make progress.
 
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.

I know for a fact my first eight years were a constant downward arc.

The last 20 years have vacillated.

It's also not a single tune. There are melodies over melodies, only none is pleasant, and they lack harmony. Each symptom acts like it's its own entity, like it has discreet volition in deciding when to lessen its volume or blare it.
 
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