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

Found this quote there, re @Yann04 above
Jonathan Edwards said:
Immunological problems in childhood or adolescence that peter out in adulthood are reasonably common. Juvenile inflammatory arthritis often peters out, whereas adult rheumatoid tends not to. Childhood allergies and asthma may peter out whereas adult asthma probably less often does.

Neurological damage in children can be followed by major recovery of a sort less likely in the adult, but it depends a lot on the structural basis of the damage. I suspect the neurological context shows fewer convincing examples.
Click to expand...
 
Yann04 said:
In other stochastic illnesses that are often lifelong but still have some spontaneous recoveries does it follow similar age - severity patterns to ME/CFS in recovery?
Click to expand...

Generally not. Chronic diseases with a stochastic element tend to have worse prognosis if of early onset. There are some odd patterns though. Juvenile onset pauciarticular inflammatory arthritis quite often remits by adulthood. Reiter's syndrome mostly occurs in young adults and remits. But then there isn't another later non-remitting form.

I think the likely case that relatively good resolution of ME/CFS with onset before 25 is more common than later in life does present a very interesting aspect. One possibility is that it indicates a problem with neural signalling that is likelier to resolve in a younger, more plastic central nervous system. But we don't have any good evidence for that.

Edit: seems I said much the same before.
 
forestglip said:
Thread about paper for recovery rate in children and a bit of speculating similar to this thread: Long Term Follow up of Young People With Chronic Fatigue Syndrome Attending a Pediatric Outpatient Service, 2019, Rowe
Click to expand...
Thanks! Just captured some quotes from that, some of the very prescient of where we seem to be theorywise at the moment.

Jonathan Edwards said:
An alternative possibility is that ME is a pattern of breakdown of signalling in a complex control system (maybe neurological or immunological or both). That reversibility of that pattern may depend on the state of maturation or development of the system. Early on there may be ways to re-route around the problem but once the system is fully in place that may be much more difficult.
Click to expand...

Barry said:
Are there any examples of better understood illnesses with that characteristic, and if so could there be any clues in that?
Click to expand...

Snowdrop said:
I would think that still leaves the possibility that the work around to parts of a system can also then experience problems in time too eventually.
Click to expand...

Jonathan Edwards said:
Immunological problems in childhood or adolescence that peter out in adulthood are reasonably common. Juvenile inflammatory arthritis often peters out, whereas adult rheumatoid tends not to. Childhood allergies and asthma may peter out whereas adult asthma probably less often does.

Neurological damage in children can be followed by major recovery of a sort less likely in the adult, but it depends a lot on the structural basis of the damage. I suspect the neurological context shows fewer convincing examples.
Click to expand...

Hutan said:
Another alternative or additional possibility is that ME may be more likely and more severe in a (physically) stressed body. And a growth spurt is a pretty major stressor. So young people may be more likely to get ME during that time, but then may be more likely to improve once growth slows and that stressor no longer applies.
Click to expand...
 
Sasha said:
Can't believe it never occurred to me to ask this question before! Does it tell us anything about mechanism?
Click to expand...
The difficult thing is I can’t be sure it is true. Neither adult or child anything have collected data honestly. And those getting it as children are under even more risk and perceived threat/coercion as well as not knowing what ‘100% well them’ is in the same way an adult who did a similar commitment and routine for the past 5yrs at an age where change isn’t happening to such an extent knows if they are back to being able to be themselves in their old job and socialising a bit

Plus the services are brutal and treatment from every other service or access to medical care they will be aware has often been changed from safety net to threat by the label stuck to them

If making a choice when escaping a service by aging out as to whether to sign yourself back into all that at an adult version and have it taint other things going forward is a realistic option (ie you aren’t so severe that if you don’t ’explain Yourself’ with one label you’ll get something even worse) is looked at just like an outsider unemotionally in pros and cons then neither offers a good life but one might be the break from the suffocating observation even without looking at the other pros and cons.

I do suspect some young people do get a lot better just as some adults have a ‘first time I recovered’ but no one is joining the records together to see if that means forever and means to the extent they can sign up for that trip of a lifetime or graduate role that will be crazy hours or choose to train as an athlete . ie if we are interpreting this as useful because it indicates a 'switched it off' clue. And that difference is key if you aren’t bps and redefining ‘recovered’ because it’s still there just waiting for another illness or exertion or both and nowadays I’ve realised lots with MS still have MS but have times of not being visibly ill etc but still have it .

It’s still useful to know how that person got more well and track them but also those who don’t because that’s different to assuming they are cured. That ‘it’ has ‘gone’ . In some maybe it has and in others not but shouldn’t the tests need those comparators and check it isn’t just the illness at a better point whilst life is at a better point coinciding but havoc potential can still rein in future years etc.
 
Last edited:
Alinda said:
Everyone seems to claim this but I never saw a study properly studying if it is the case. Do we have anything??
Click to expand...
I know 3 people (one is hearsay of ‘my friend from school I’m still touch with had this during school’ ) who had this to various extents just from top of my head now as under 18s

Not one doesn’t still have it decades on. There have been worse points that have been ‘recovered from’ but not anything to the extent of it not being a significant disability just some life could be done a bit but then for two at least even then it ending further in that collapsing to losing their careers and/or rest of their life being limited.
 
Sasha said:
Can't believe it never occurred to me to ask this question before! Does it tell us anything about mechanism?
Click to expand...
I don't think the fact about greater recovery potential in youth is a good starting point to speculate about pathomechanisms. However, if you argue for a specific mechanism to be more valid than others then you can bolster your views further by presenting a reason for better recovery in youth in ME/CFS.

Chronic HHV-6b reactivation theory can deliver such an argument. It is thought that under the problem with reactivation is an immune defect. The cause for detiororating chances of full remission with aging would then be that the body has greater powers to kill, regenerate, and repair dysfunctional cells or systems until in its 20ies and when later these forces begin to weaken the chances of remission do to.
 
This thread highlights our lack of good epidemiological data in relation to ME/CFS. I think it is an interesting question as to what differences there are in recovery rates between adults and children, but we need better data to be certain that this is the case and to be able to quantify the size of this discrepancy.
 
The suggestion that autism might be relevant to the thread question seems to me to be very reasonable and scientifically important. A lot of genes relating to neurodevelopment have been coming up on genetics studies and the two age peaks for incidence of ME/CFS would be consistent with a role for neurodevelopment.
 
Last edited by a moderator:
If someone wants to link neurodevelopment, autism and the possibility of a higher rate of recovery in young people, that would be on topic. However examining the evidence for the suggestion that there is a higher rate of autism among people with ME/CFS is off-topic for the thread and is better discussed on the autism thread.
 
Last edited:
Hutan said:
However just suggesting that there might be a higher rate of autism among people with ME/CFS is off-topic for the thread
Click to expand...

The evidence might be anecdotal but if neurodevelopment has been raised (which it had been) then surely an association with autism would be relevant? At least one gene has been raised as a possible link for both conditions. We have discussions like this about other medical conditions and pathways.
 
You must log in or register to reply here.
Back
Top Bottom