Why are children and young people more likely to recover from ME/CFS than adults?

[Sasha]

I'm not very clear on what 'children' means in this context. (The claim about greater likelihood of recovery mostly seemed to be about children rather than young people.)

I assumed it meant children who haven't yet gone through puberty, but I don't know why or where that impression came from. It's fairly important, though!

I was arm-wavingly trying to convey whatever cut-off we believe to be the case, from the epidemiology/folklore, where being young seems to help you recover. I don't know whether there's some kind of recovery-rate drop-off at puberty and my impression has been that you still have a much better chance of recovery as a post-puberty teen than you do as an adult. But who knows?

 

[Evergreen]

Re neurology, I keep thinking of this recent study, where there was a turning point at 32.

Re immunology, could there be immune system differences between those below 30 and above 30 that make recovery more likely in the former?

 

[Midnattsol]

But do people recover? Or do they live with disability that is just not as serious as it was previously? For example there are things they are not able to do, but it's not framed as illness.

I dropped out of school in my late teens, while I've "recovered" enough to be working full-time I'm not recovered.

 

[Jonathan Edwards]

Re immunology, could there be immune system differences between those below 30 and above 30 that make recovery more likely in the former?

There are conceivable explanations like there being more chance of new regulatory T cell clones turning off an adaptive immune error at an earlier age but they would be very speculative.

 

[Sasha]

Possible AI cobblers from Google but the timeframe maybe fits?

The brain doesn't have a single "fully developed" moment, but key maturation, especially the prefrontal cortex for decision-making, continues into the mid-to-late 20s, with significant changes extending into the early 30s, a process involving intense "pruning" and "wiring" to become more efficient, ending the adolescent phase around age 32 before adult stability.

 

[Hutan]

But do people recover? Or do they live with disability that is just not as serious as it was previously? For example there are things they are not able to do, but it's not framed as illness.

I dropped out of school in my late teens, while I've "recovered" enough to be working full-time I'm not recovered.

I do think that the premise of the question that is the subject of the thread has to be up for debate. We think young people are more likely to recover, but just possibly they aren't.

Perhaps they are more likely to be diagnosed early, in the period when recovery is more common in all ages.

Some of the criteria for paediatric ME/CFS requires a shorter period of illness before there is a diagnosis (eg 3 months versus 6 months). We know a lot of people with ME/CFS symptoms do recover before the 6 month mark.

It also seems possible that a child struggling to get to school and maintain their social and afterschool activities might be given more medical attention than an adult. The child has parents and a school advocating for prompt attention and therefore early diagnosis. So, again, there might be more young people diagnosed soon after onset when recovery is more common.

We need much better epidemiological information.

 

[Clio]

But do people recover? Or do they live with disability that is just not as serious as it was previously? For example there are things they are not able to do, but it's not framed as illness.

I dropped out of school in my late teens, while I've "recovered" enough to be working full-time I'm not recovered.

This may be a little off topic but it's the main question on my mind. Almost every recovery story posted on the cfs or covid long haulers subreddit seems to come with *some* limitations compared to their previous health. Sure, those people may no longer be bedbound in a dark room, may even be able to work full time but not being able to do any sports? While certainly a better situation I wouldn't count that as recovered. 95% better but not 100%.

To me someone who is recovered/in remission should be able to train for and run a marathon without PEM. That to me would be the definite proof of recovery. Pretty high bar but I haven't seen a single person with previous ME/CFS diagnosis be able to do that.

 

[bobbler]

This may be a little off topic but it's the main question on my mind. Almost every recovery story posted on the cfs or covid long haulers subreddit seems to come with *some* limitations compared to their previous health. Sure, those people may no longer be bedbound in a dark room, may even be able to work full time but not being able to do any sports? While certainly a better situation I wouldn't count that as recovered. 95% better but not 100%.

To me someone who is recovered/in remission should be able to train for and run a marathon without PEM. That to me would be the definite proof of recovery. Pretty high bar but I haven't seen a single person with previous ME/CFS diagnosis be able to do that.

And actually get fitter so marathon is a good test as you have to work up to it

Another one I had in my head people don’t think of is being able to sign up to a theme park without plans of how to make it manageable including the journey ie not say carefree as used to be and also not normal like not ill people even if they do get tired from a long week

It’s tricky with young people because that’s the stage in life when some might be most capable academically or physically so not being able to do the maths degree you should have been able to from prior talents vs having to choose something more forgiving are things people don’t notice and assume ‘well you are fine as you did uni’ etc

 

[forestglip]

Moderation note

Some posts deleted in error when removing off-topic or rule breaching posts have been reinstated. Some posts discussing the deletions have been removed so as not to distract from the discussion.

 

[ryanc97]

And actually get fitter so marathon is a good test as you have to work up to it

Another one I had in my head people don’t think of is being able to sign up to a theme park without plans of how to make it manageable including the journey ie not say carefree as used to be and also not normal like not ill people even if they do get tired from a long week

It’s tricky with young people because that’s the stage in life when some might be most capable academically or physically so not being able to do the maths degree you should have been able to from prior talents vs having to choose something more forgiving are things people don’t notice and assume ‘well you are fine as you did uni’ etc

If I recovered, I would be so traumatized from my first exercise session that caused my ME I am quite happy to give up exercise for the rest of my life. Don't care if I die from being unfit.

 

[bobbler]

If I recovered, I would be so traumatized from my first exercise session that caused my ME I am quite happy to give up exercise for the rest of my life. Don't care if I die from being unfit.

Yes there is a different perspective on life from being so ill where top of the list ‘if I was cured’ isn’t what those who’ve never been there would sssume.

But it’s a different test between being a lot better whilst having a time in life when body is at its best otherwise and commitments might be lighter eg if at uni and able to space out lectures not too much walking etc and knowing if is cured so being able to sign up for or keep going on normal person level stuff. Others might have better examples.

I can’t ever imagine going on a big journey then sitting on rollercoasters but I do belief I think I liked those days out as a kid even if it was more the company of being with friends (and it didn’t make me ill where it would take stupid lengths of time to recover)

It’s more making the point that there are a few give-away activities that a well person vs someone with well-managed me/cfs who is fit enough to do a bit of sport but still having to be cautious would be very different for.

That if our me/cfs got much better but not switched off we might have a long list of jobs or courses or activities we want to try and do. But it’s those unforgiving without adjustments and breaks eg a job with less weekends and rests and longer days takes its toll and becomes unmanageable no matter what the determination to be doing less social life and getting a cleaner very organised etc.