Why does some ME/CFS become very severe? Discussion thread

I'm not sure if this is the right place to post this. Perhaps it should be in a separate thread.

I've been wondering why some people don't recover or don't fully recover after an episode of PEM/crash and others do.

It seems that some people keep overdoing it, keep crashing, e.g. even for years while trying to work while others deteriorate quite quickly in comparison.

Sometimes I wondered how often others experienced PEM but having been in some patient groups for years and having built relationships with other patients, I see that some people are crashing really often (in comparison to me) but they bounce back.

At some point I started thinking that the ability to bounce back is what distinguishes those who remain stable or improve from those who get worse. But what would be the underlying mechanism? Why would someone bounce back and someone else with a similar level of functionality/severity or even higher functionality wouldn't? Is there a process which basically determines one's trajectory and the patient's circumstances can only accelerate it but not change its course?

I know no one knows. Just thinking out loud.

I don't think it's about crashing soft, i.e. that if someone does just a little bit more above their threshold, just the right amount of not too much, that it leads to recovering from subsequent PEM as opposed to doing more than that. There are people who e.g. need help with food prep and putting the dishes in the dishwasher (because those activities trigger PEM) but they can go out weekly or multiple times a week for a few hours, crash each time, recover to pre-crash levels and maintain the same level of health for years. Please don't get fixated on this particular example. It's just an attempt to illustrate that some people fully recover from an activity which seems far more taxing than what they can manage without triggering PEM. And the point it that some people can keep doing it without deteriorating while others with the same or similar severity or even in better health deteriorate from seemingly smaller endeavours.
 
I've had ME/CFS for over 30 years now and looking back over that timeline I see some interesting differences about each stage. From early ME onset to very severe then out the other side to moderate.

I need to try to get my thoughts together and write down those things I have noticed. I am really struggling though with interaction and making any sense at the moment.
 
It's probably different baselines. For me I dont think ive triggered PEM badly since my onset in Jan 2025 or at all. Because my baseline is that as long as I don't do exercise, I'm still stuck at my baseline. Which is still extreme fatigue and some muscle weakness.

For me, I technically only triggered PEM once, which was my onset where I played football on 10 January 2025 for 2 hours after recovering from Covid or an infection.

Then the next day, all my ME CFS symptoms came, roughly 22 hours later. I played football 7-9pm on a Saturday, and at 4pm on Sunday a sudden wave of fatigue hit me and I nearly passed out in public. Then came fever, chills, and the next day, all the other symptoms.

Since then, that "crash" gave me MECFS, and I have not crashed since then. I limit my physical activity to walking, and have not ran since.

Because my symptoms were so sudden, I didn't overexert or push in the beginning period because I knew something was wrong. I was also on garden leave in between jobs so I just stayed at home and slept all day. I also suspected I had MECFS one week in. So my baseline has been quite stable since then.
 
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I definitely deteriorated permanently because of decades of brutal medical gaslighting telling me to push through. Wasn't some laboratory based research done in (Montreal?) that identified different forms of ME, one always mild, a couple that were mild- severe, one pretty much straight deterioration into Very Severe. I Can't recall the details. Mine seems to have followed an MS type pattern of fluctuations and then chronic progressive.
 
Re your thoughts Felis Cactus I wish it was easier to clarify.
My own “post-“ happenings (whether it be a chat with a friend, driving, sorting bills online , searching out flights for a friend -what a brain strain that can be-, or more physical activity like shifting shoulder high cookianum flaxes -my mistake, thought they were the smaller mountain ones on purchase-! )
all have fallout and its sometimes a huge crash from something relatively inconsequential … the fluctuations and variables too much for my befuddled bewildered brain to see through.

We get to know our base lines by trial and error you could say (especially in those early days) but when resting or pacing achieves no true or lasting improvement , when all you experience is quiet but steady decline , what then ?
 
Felis Catus said:
At some point I started thinking that the ability to bounce back is what distinguishes those who remain stable or improve from those who get worse. But what would be the underlying mechanism? Why would someone bounce back and someone else with a similar level of functionality/severity or even higher functionality wouldn't? Is there a process which basically determines one's trajectory and the patient's circumstances can only accelerate it but not change its course?
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I've wondered about these things too. I got worse for 10 years. But then something changed and I stopped getting worse. I "get away" with more. If I have a medical appointment, I still feel bad after it, but not for 3 months, and it doesn't trigger another step down. So whatever the worsening mechanism or process is, it can change.
 
I had a very sudden onset from an infection, it didn’t stop me from exercising. PEM and pacing is so counterintuitive to what you might be used to, so I don’t think we can expect anyone to discover it by themselves even though some are lucky and do just that.
 
Snow Leopard said:
From doing too much exercise/GET to trying repeated medications until something makes the condition much worse.
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What are the alternatives to trying something that might help? We know that doing nothing doesn't help. I've tried lots of different things, and some of them actually did help, and none of them caused long-term worsening. Others may have tried the same things, and had no benefit, but instead had long-term worsening. We simply don't know in advance which treatments or techniques will have which effect on which person. It's simply gambling.

For the people who try a few things and crash badly, I recommend avoiding further such experiments. For people such as myself, I do recommend experimentation. I have no reason to believe that dandelion root would be helpful ... but it actually did provide a slight benefit for a short period. I certainly wouldn't have rated cumin as a likely treatment for PEM, but it gave me miraculous results. Maybe someone with severe ME would make a dramatic recovery from taking parsnip juice, but a treatment that you don't have a reason to try, and which risks harm, is no better than no treatment at all.

Hindsight (I really shouldn't have tried that.) isn't helpful in avoiding that mistake beforehand.
 
Creekside said:
What are the alternatives to trying something that might help? We know that doing nothing doesn't help. I've tried lots of different things, and some of them actually did help, and none of them caused long-term worsening. Others may have tried the same things, and had no benefit, but instead had long-term worsening. We simply don't know in advance which treatments or techniques will have which effect on which person. It's simply gambling.

For the people who try a few things and crash badly, I recommend avoiding further such experiments. For people such as myself, I do recommend experimentation. I have no reason to believe that dandelion root would be helpful ... but it actually did provide a slight benefit for a short period. I certainly wouldn't have rated cumin as a likely treatment for PEM, but it gave me miraculous results. Maybe someone with severe ME would make a dramatic recovery from taking parsnip juice, but a treatment that you don't have a reason to try, and which risks harm, is no better than no treatment at all.

Hindsight (I really shouldn't have tried that.) isn't helpful in avoiding that mistake beforehand.
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Its interesting -and has probably been discussed before- how benefit is obtained from certain things but that it “stops working” or doesnt get the same results a few weeks or months down the track.
Prednisone is an easy and clear example.
(Still Use ca 3x a year (20mg 5 days) for major skin and inflammation flare ups (MCAS ? Angioedema?).
Years back a Rheumatologist put me on LD increasing slowly to 7mg/9mg… was so wonderful ! Even that wired feeling couldnt outweigh the joy of awakening access to brain and body.
However despite not overdoing (was hard which is why its clear in my memory) it just stopped working after a 2 months .
Despite easing off the fallout post drug use was horrid for fatigue and chills.
(I still factor that in when using short bursts to halt increasing urticaria etc.)
 
T&O said:
Its interesting -and has probably been discussed before- how benefit is obtained from certain things but that it “stops working” or doesnt get the same results a few weeks or months down the track.
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That adaptive response is well-known. I have had some treatments work for a year or more, and stop working because the symptom they were treating had gone away. I had others that gave significant improvements, but then stopped working; prednisone was one.

I do wonder whether if we fed enough PWME's experiences into a suitable AI, it could suggest some possibilities to research, or at least weed out some theories that the evidence contradicts.

Hmmm, collaboration among humans, especially involving different disciplines and bodies of knowledge, have provided new insights. What happens when two AIs collaborate?
 
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