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

[Sasha]

The topic of the thread is recovery rates in young people, so raising autism is fine on the thread, so long as what is said relates to recovery rates.

The topic as I introduced it in my original post is broader than that - it's about what recovery rates in young people might tell us about mechanism, and that might lead in all sorts of interesting directions, including age of onset of ME/CFS in relation to neurodevelopment, and how that compares to other neurological conditions.

 

[Kitty]

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!

 

[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

 

[Trish]

Some posts about ADHD and autism have been removed. To discuss those topics, please use these threads:

• ADHD and ME/CFS
• Autism and ME/CFS

Moderator note:

For clarity: The earlier mod note, quoted above, did not explain the full reasons for deletion of the discussion of autism from this thread. Some deletions were also due to offensive views being expressed about autism and about people identifying as neurodivergent, breaching rule 1c.

If anyone has information or ideas on the relevance of autism or other forms of neurodivergence to recovery from ME/CFS in children or young people, they can be posted on this thread.

For wider discussion of a possible genetic link between ME/CFS and autism or ADHD, please go to the threads linked above.

 

[Sasha]

Moderator note:

If anyone has information or ideas on the relevance of autism or other forms of neurodivergence to recovery from ME/CFS in children or young people, they can be posted on this thread.

Thanks for clarifying - I'd like to see this particular discussion continuing.