Adolescent recovery

A

Amw66

Senior Member (Voting Rights)
Within many official websites and information leaflets there is a standard soundbite that most adolescents recover within 2 years.

From the parents' forums of which i am a member this does not hold true. Most children who have ME seem to have a significant improvement ( but not always recovered) within 4.5 years.
Dr Speight highlighted this in a video of a talk i watched last year ( didn' t think to bookmark it)

From much adolescent research it is clear that it is not ME that is studied, rather chronic fatigue, or more recently, a made up term of chronic disabling fatigue which is argued as a proxy term for CFS ( includes ME), which is now generating its own literature via published research. Dangerous conflation as we move into a widened MUS / IAPCT application.

Can anyone provide research that confirms
2 year recovery with stats in support
Definition of what adolescent recovery constitutes

I' m tagging @AFME as this was highlighted in one of their GP webinars and has caused much discussion between some GPs and parents.

Is this just a statement unsupported by robust stats?

My son had severe post viral fatigue after glandular fever. His electrolytic balance was screwed up for months . He recovered after 18 months.

I believe this to be the nub of the problem.
Any stats may not be relevent to ME, and professionals and parents are working with unrealistic / irrelevant info.
 
This recent primer is probably as authoritative a source as any.

https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
Front. Pediatr., 19 June 2017 | https://doi.org/10.3389/fped.2017.00121

It is generally accepted that young people with ME/CFS have a more favorable prognosis than adults. There have been few studies with sufficient numbers and duration of follow-up to be confident of the findings, but factors such as severity of symptoms or age at onset have not been shown to be reliable predictors of long-term outcomes.

In a follow-up study of nearly 700 young people the average duration of illness of those who report having “recovered” was 4–5 years with a range from 1 to 15 years. By 5 years, 60% reported recovery, and by 12 years, 88% reported recovery. Of those who reported recovery, about one-third admitted to modifying their activities to remain feeling well (19).

Several other studies found that although many patients improved, 20–48% showed no improvement or actually had worse fatigue and physical impairment at follow-up times ranging from 2 to 13 years (20–22). Even among those who report having completely recovered, many describe persistent symptoms that are not reported by healthy individuals (20).
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Amw66 said:
My son had severe post viral fatigue after glandular fever. His electrolytic balance was screwed up for months . He recovered after 18 months.

I believe this to be the nub of the problem.
Any stats may not be relevent to ME, and professionals and parents are working with unrealistic / irrelevant info.
Click to expand...

People such as Esther Crawley with an agenda to inflate CFS statistics have confused things with definitions of CFS that, for example, allow children assessed by a parent as having been tired for more than 6 months to be included in CFS studies.

But even for people not pushing a BPS agenda, there are problems defining ME/CFS or ME. For example, my daughter at age 16 had fatigue with a range of other symptoms after a severe gastric viral infection that saw her hospitalised initially with suspected appendicitis. She struggled through school and sports, having quite a lot of days off and collapsing into bed as soon as she got home. After two years she had recovered to close to her pre-illness health. I suspect @Amw66, with just that information, that you and many others might give her a 'post viral fatigue' label rather than an ME diagnosis.

However at the same time as my daughter became ill, my son and I did too. My son, then aged 13 has now been significantly impacted for 5 years. He's a lot better than in the first year and now goes to school part-time but is still quite limited by the illness. And I'm still sick too and unable to work. All three of us experienced the usual long list of ME symptoms. It's clear to me that whatever we got, we all got it, just with different severities.

I agree that we are working with unrealistic and irrelevant information on incidence, recovery times and recovery definitions. While things can be improved, I don't think we will have very useful data until we have clear biomarkers and some understanding of the mechanisms of ME (or subsets).
 
Hutan said:
People such as Esther Crawley with an agenda to inflate CFS statistics have confused things with definitions of CFS that, for example, allow children assessed by a parent as having been tired for more than 6 months to be included in CFS studies.

But even for people not pushing a BPS agenda, there are problems defining ME/CFS or ME. For example, my daughter at age 16 had fatigue with a range of other symptoms after a severe gastric viral infection that saw her hospitalised initially with suspected appendicitis. She struggled through school and sports, having quite a lot of days off and collapsing into bed as soon as she got home. After two years she had recovered to close to her pre-illness health. I suspect @Amw66, with just that information, that you and many others might give her a 'post viral fatigue' label rather than an ME diagnosis.

However at the same time as my daughter became ill, my son and I did too. My son, then aged 13 has now been significantly impacted for 5 years. He's a lot better than in the first year and now goes to school part-time but is still quite limited by the illness. And I'm still sick too and unable to work. All three of us experienced the usual long list of ME symptoms. It's clear to me that whatever we got, we all got it, just with different severities.

I agree that we are working with unrealistic and irrelevant information on incidence, recovery times and recovery definitions. While things can be improved, I don't think we will have very useful data until we have clear biomarkers and some understanding of the mechanisms of ME (or subsets).
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In retrospect my GP thought that my son also had CFS - he did not have the range of symptoms , and specifically did not have PEM to enable this diagnosis.
 
It may be that matters have not changed greatly on the recovery front. In 1993 McCluskey said:
"Of the CFS patients that we have studied about 16.8% seem to recover from this illness.....So about 17% of the population of patients seen in a major teaching hospital seem to recover. It may be that among people in the community with milder and less chronic forms of the illness the spontaneous recovery rate is much higher.". And about children

"In my paediatric immunology clinic I have seen about 20 patients under the age of 13 who have CFS, are incapacitated, and can't go to school.......Most of the children recover; the majority are now completely well again, but some have been ill for 2-3 years, and haven't been to school for two years."

It would seem that even under restrictive definitions the view was that most would recover, but some would not.
 
I have a theory that young people can recover more quickly if they are not also growing rapidly. When my daughter became ill, she had already done most of her growing and recovered relatively quickly and relatively well.

In contrast, my son was 13 years old when he became ill and has done a lot of his growing lying in bed. Now that he is 18 and his height growth has almost finished he seems to be getting quite a lot better (fingers crossed the gains hold). I think it makes sense that growing, being an energy demanding process, slows recovery.

If studies on recovery in young people are done, it would be good if they took the timing of growth spurts into account.
 
Hutan said:
I have a theory that young people can recover more quickly if they are not also growing rapidly. When my daughter became ill, she had already done most of her growing and recovered relatively quickly and relatively well.

In contrast, my son was 13 years old when he became ill and has done a lot of his growing lying in bed. Now that he is 18 and his height growth has almost finished he seems to be getting quite a lot better (fingers crossed the gains hold). I think it makes sense that growing, being an energy demanding process, slows recovery.

If studies on recovery in young people are done, it would be good if they took the timing of growth spurts into account.
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i would agree with this ; physical growth ( including endocrine system input) takes a fair whack of energy. From parents' forums many children had issues with growth spurts pre M.E. - my daughter had issues with hips and knees, which may also have caused imflammation......
My son had growth spurt issues ( he "grew out of" asthma, and coming off steroids had the effect of planting his feet in fertiliser; osteochronditis issues), prior to post viral fatigue....
 
Puberty is another issue that might impact recovery.

Some menopausal women find that the hormone fluctuations can make symptoms worse and their ME even less predictable.

I know hormones can make it very difficult for young femaie insulin dependent patients to manage and keep the condirion stable. It's called brittle diabetes.

So, I should think that for many adolescent girls this could be a factor. I should imagine it might affect boys as well, but probably not to such an extent.
 
Denise said:
What is the definition of recovery?
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For me it's being able to go on a ten mile hike in the morning, sit a Maths exam in the afternoon and get a distinction, and then go dancing in the evening, sleep well that night and wake refreshed and able to do it all again the next day...

Well, I can dream...

Seriously though, I think it should be returning to a state of full health and able to do all pre-illness activities without ill effect.
 
chrisb said:
It may be that matters have not changed greatly on the recovery front. In 1993 McCluskey said:
"Of the CFS patients that we have studied about 16.8% seem to recover from this illness.....So about 17% of the population of patients seen in a major teaching hospital seem to recover. It may be that among people in the community with milder and less chronic forms of the illness the spontaneous recovery rate is much higher.". And about children

"In my paediatric immunology clinic I have seen about 20 patients under the age of 13 who have CFS, are incapacitated, and can't go to school.......Most of the children recover; the majority are now completely well again, but some have been ill for 2-3 years, and haven't been to school for two years."

It would seem that even under restrictive definitions the view was that most would recover, but some would not.
Click to expand...
What other than assumption is the basis for saying anyone with milder forms have higher spontaneous recovery chance. How many times do we hear of people who had ME as an adolescent where it “returns” later.
 
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