Pediatric chronic fatigue syndrome: current perspectives (Crawley)

It would certainly be worthwhile having a summary of errors for Crawley Paediatric "papers" including:

• diagnostic criteria (if any)
• measurements of physical health, fatigue, cognitive processing, activity levels...
• size of sample
• duration and severity of illness etc

There were at least two very able people in our local(ish) ME group who were very keen to contribute to this kind of analysis. As one of them (a research physicist pre ME) said "It is very satisfying looking for faults in others' research". This is particularly relevant when it furthers understanding of ME and protection of children with the disease.

If others have not looked at detail into this maybe a Private forum could be set up where such analysis could be gathered to support the work of MEA/DT/Keith G and anyone else for whom it would be useful.

 

The private forum area is certainly something do-able, PM me to discuss it further.

 

From parents' forums, if the " specialist treatment" does not work you are discharged from the clinic' s care.

 

just as a reminder
https://twitter.com/user/status/980076679870730241


note: AYMEs CEO was MJ Willows who less than a year and a half ago was on National television supporting Esther Crawley and FITNET; she (MJW) is now AfMEs head of Childrens Services.

 

So modern to retrogress to blaming the mums! Refrigerator mothers rise from their cryogenic sleep!

And from the So Sciency Dept: "It is a complicated illness but the majority of children get better with specialist treatment."

 

Vague- no definition to date if what " better" actually is. Whilst most people would take it to mean full recovery, i suspect it' s living within a slightly increased energy envelope that enables school and some social life.

Most adults i have heard from that had ME following glandular fever are very aware that it is a fine line , they are still aware of hiw much/ what they do. For females post pregnancy seems a significant risk area- those damn hormones!

 

"It is a complicated illness but the majority of children get bitter with specialist treatment."

There, fixed it.

 

Webdog!