Adolescent recovery

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.

 

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.

 

@Amw66 the tag @AFME in your OP doesn't work because it should be @Action for M.E.

 

Thank you for pointing this out - posted pre morning coffee

 

I think the point is - if there is no evidence to support this claim it needs debunked.
It should have no place in a professional webinar, nor any general info..

IMO, the primer figures would be a better starting point.

 

The outcome for those diagnosed and told to rest is most certainly better than for the vast majority who do not get diagnosed and are not told to rest.

 

Sadly here if diagnosed , rest is not an official option ....

 

Yes.

Even the claim in the primer (of 700+ patients) is not formally published in a peer reviewed journal.

 

Sadly little concrete info. That said, a survey may be slightly better than a soundbite. At least it has a basis .

 

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 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.

 

What is the definition of recovery?

 

Who knows ? That seems to be undefined.

 

Given the recent paper by Rowe suggesting 68% with an overlap on nearly recovered perhaps suggesting 55%+, over 6 years can @Action for M.E. @Russell Fleming push to have guidance corrected?
Nothing like 80% over 2 years ...