Was our ME/CFS inevitable?

Sasha

Sasha

Senior Member (Voting Rights)
Would all of us with ME/CFS have got it sooner or later? Particularly those of us with severe ME/CFS?

Lots of us seem to have got ME/CFS following an infection, which makes me wonder whether, If we'd dodged that particular infection, we'd have been doomed to get it anyway, at some point.

I don't understand the biological theories well enough to know the answer. I know that a genetic disposition doesn't guarantee that an illness will manifest, but if the illness is one that can be triggered by viruses, and we live in a world of viruses, maybe for us it was only a matter of time...?
 
You are essentially suggesting that ME/CFS is set up genetically and that whatever the environment those due to get it will get it. One can test that by looking at identical twins who have got ME/CFS. They should be 100% matched. The data are limited but what we have does not show that if I remember rightly.

You are not factoring in the random element. As I have said in the past, internal randomness is a major contributor to chronic disease - probably as much as genes and environment.

But if you follow Leibniz's cogent argument, whatever the mechanism, you can say that in this world those who got ME/CFS were always going to get it when they did. There is no future in this world other than future that is to come.
 
My guess is that we have a predisposition to develop ME. Having a 90% or .01% chance of developing it at some point in your life when you encounter some set of factors doesn't make it inevitable. Mr. 90% might not develop it after covid, due to some factor, while Mr. .01% does develop it. So, if you are predisposed, you might manage to avoid some possible triggers, but you still have a high probability for the next potential trigger ... but you still have a chance of getting through life without triggering ME. Some of us might have been in the .01% (or lower) group, yet still simply get unlucky.

Of more interest might be: "How many people switch into ME state at some point in their lives, but switch back out after a short time and don't switch back in?" Since it's hard to diagnose (the criteria requires 6 months of symptoms?), there might be many people that dismiss a few days or weeks of symptoms as a viral infection.
 
Jonathan Edwards said:
You are essentially suggesting that ME/CFS is set up genetically and that whatever the environment those due to get it will get it. One can test that by looking at identical twins who have got ME/CFS. They should be 100% matched. The data are limited but what we have does not show that if I remember rightly.

You are not factoring in the random element. As I have said in the past, internal randomness is a major contributor to chronic disease - probably as much as genes and environment.
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Does it make sense to ask, given that someone has ME/CFS, what the likelihood is that they would still have got it if they had dodged a particular infection but would of course be exposed to future ones?

I'm thinking partly about what our futures will be like if some drug comes along that's an 'off' switch - say, dara. If we get reset to zero. I wonder what our chances would be of not coming down with ME/CFS again.
 
Sasha said:
Particularly those of us with severe ME/CFS?
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Why "particular"? Unless there is evidence for development of severe ME/CFS being different in development how would it matter for this discussion?
Sasha said:
I don't understand the biological theories well enough to know the answer.
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I don't think one has to understand any possible theories of ME/CFS to answer this question. ME/CFS appears to appear when a mix of genetic, environmental, lifestyle and random factors come together. Could those have been avoidable? Possibly, but it isn't very different from asking: If I had gotten out of bed with my right foot on day 2351 of my life, would I not have ended up with xyz?

There's the possibility that there's some more subtle mechanisms at play, for instance in the future one may find (or not) that avoiding glandular fever during certain ages decreases ME/CFS risk, but these statements are almost always at the population level and I don't think we currently know much.
 
I think that I will be more likely to get ME/CFS again if I’m cured, because the people that get it once on average were more likely to get ME/CFS than the people that have not gotten it.

Regardless, I plan on strict masking if I’m ever able to be with people again on a regular basis. Mostly because my risk calculation now involves the possibility of getting ME/CFS, which I wasn’t aware of before getting it. A restricted life is worth more to me than risking having what’s essentially no life again.
 
Sasha said:
I'm thinking partly about what our futures will be like if some drug comes along that's an 'off' switch - say, dara. If we get reset to zero. I wonder what our chances would be of not coming down with ME/CFS again.
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Yes, in theory one could establish the risks. For rheumatoid we have a pretty good idea. On average someone who gets rheumatoid has a one in four lifetime chance of getting it so if we reset their immune system to normal they would go back to (a bit less than) a 1/4 lifetime chance of getting it again. There will be complicating factors that make this very approximate but in theory one could find out the reality by doing massive twin studies and following people after treatment.
 
Jonathan Edwards said:
Yes, in theory one could establish the risks. For rheumatoid we have a pretty good idea. On average someone who gets rheumatoid has a one in four lifetime chance of getting it so if we reset their immune system to normal they would go back to (a bit less than) a 1/4 lifetime chance of getting it again. There will be complicating factors that make this very approximate but in theory one could find out the reality by doing massive twin studies and following people after treatment.
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Do you have any feeling for what the equivalent figure would be for ME/CFS, given the (scant) literature)? Or even just whether it's bigger or smaller than for RA?
 
Sasha said:
Would all of us with ME/CFS have got it sooner or later? Particularly those of us with severe ME/CFS?

Lots of us seem to have got ME/CFS following an infection, which makes me wonder whether, If we'd dodged that particular infection, we'd have been doomed to get it anyway, at some point.

I don't understand the biological theories well enough to know the answer. I know that a genetic disposition doesn't guarantee that an illness will manifest, but if the illness is one that can be triggered by viruses, and we live in a world of viruses, maybe for us it was only a matter of time...?
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Perhaps research into families with multiple member with ME/CFS may shed some light on some of the factors which may make this more likely.
My aunt and my daughter both have ME. personality trait wise they are like peas in a pod. Also have similar issues with skin, painful periods, headaches.
My aunt lives an hour away- we are coastal, my aunt is rural . not a huge amount of time spent together when kids were small due to both she and I working. Environmental factor would not suggest an obvious link.
 
I think for my personal case, sadly, if we take the view that environment is a factor, I probably wasn't likely to get it, or at least I wasn't likely to have more than a bout of post viral illness as my mum did in her twenties.

In my late teens and twenties I had a lot of head injuries and concussions which I believe trigger an immune response, as well as a lot of horrendous hangovers/withdrawals/probably alcohol poisoning episodes which also mess with the immune system. I think it's fairly likely I would have recovered from whatever happened to me at 19 and not developed full blown MECFS later if not for those other issues.

My point is that my lifestyle or environment or however you want to look at it probably tipped the scales. Like so many immune hits that I was in a position where it was easy for me to be knocked into the signalling loop causing MECFS.

But that could be guilt and self blame speaking and it made no difference to whether I got it (it certainly didn't help matters once I had it!).
 
Sasha said:
Does it make sense to ask, given that someone has ME/CFS, what the likelihood is that they would still have got it if they had dodged a particular infection but would of course be exposed to future ones?
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I think the answer to that is: not really. There are probably too many factors involved. Maybe someone's chance of triggering ME due to a certain covid strain was 23.17% on a certain date. Age that person 6 months more and the probability could be quite different. My ME seemed to trigger on a type IV sensitivity to oranges. I'd noticed slight symptoms since early adulthood, but didn't trigger full ME until age 39. So something--actually many things--changed in that time period. We still have no idea of ME's mechanism, so the likelihood for a given individual to develop ME is 0-100%, which isn't very useful information.

Sasha said:
I wonder what our chances would be of not coming down with ME/CFS again.
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Given present lack of knowledge and the lack of knowledge of how that reset drug would work, the answer is also a useless 0-100%.
 
V.R.T. said:
My point is that my lifestyle or environment or however you want to look at it probably tipped the scales. Like so many immune hits that I was in a position where it was easy for me to be knocked into the signalling loop causing MECFS.
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Which just describes the average month for a boxer or rugby player, most of which never develop ME/CFS (even though some develop CTE and many have an increased risk of other horrible neurological conditions).

Unless it is somehow helpful for oneself, one might not always want to get too hung up on trying to find explanation for things that cannot ever possibly be explained.
 
EndME said:
Which just describes the average month for a boxer or rugby player, most of which never develop ME/CFS (even though some develop CTE and many have an increased risk of other horrible neurological conditions).

Unless it is somehow helpful for oneself, one might not always want to get too hung up on trying to find explanation for things that cannot ever possibly be explained.
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You're probably right. (although I am very concerned about my risk of CTE!)
 
I can just as easily envisage it as a treatable chronic disease, a relapsing/remitting one, or a one-shot-cures-it—though the latter's the most difficult, because disease always seems to leave a mark somehow.

But even if we never got beyond it being a treatable chronic disease, that word treatable would change everything. People live good lives with chronic disease, and while they may look a lot harder than those of fully healthy people, it doesn't mean they always are. There are lots of ways to struggle.

So if it came along in time for me, I'd be happy with any of the options. They're all much better than what I have now, and would mean I could go out and grab a lot more of life before I drop off my twig!
 
V.R.T. said:
So was Leibniz a determinist then?
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Don’t you need everything to be predictable in determinism?

It’s impossible to predict the entire future because you’d need something to do the predicting and that something would have to contain the information of the state of everything, including itself. Not to mention the issue of being able to actually know the state of everything.

And the randomness in quantum mechanics might play a role as well.

So maybe it’s «we can’t know the future and we can’t affect it»?
 
V.R.T. said:
So was Leibniz a determinist then?
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He pointed out, 300 years ago, that the current debate about 'determinism' is based on false logic. And since we now use his updated version of Aristotle's logic, he was entitled to be listened to, but nobody has much.

Utsikt said:
Don’t you need everything to be predictable in determinism?
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If everything is predictable without any leeway then that would be deterministic. But Leibniz pointed out that (1) For everything to be deterministic with no leeway you need a physics with infinities in the equations that make them unusuable. So no actual physics can ever be without leeway. (2) Even if there is leeway, we live in a world that will be the way it will be - by definition. Whether you can predict that is irrelevant. Leeway does not allow you to 'change the future' or to 'have done otherwise' or in that sense have 'free will'. But it does allow for free will in a different sense. It took me about five years to work through the implications. (Which of course I have published on Qeios in a paper on Bob Doyle's Two Stage Theory of Free Will.)
 
Before the EBV infection (glandular fever/mono) associated with the onset of my ME I had had a number of other infections, from which I recovered readily. Over a number of years I believed I had recovered, but had a major relapse associated with an episode of presumed seasonal flue. Prior to having ME previous bouts of seasonal flue had not triggered ME.

Though there may be a genetic predisposition I don’t think there is a simple relationship between predisposition, infection and ME onset.
 
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