Pediatric chronic fatigue syndrome: current perspectives (Crawley)

Amw66 said:
I have not had the heart today to look at this, but will work up to it

It would be good to have this assessed and a response from the MEA, @Russell Fleming and perhaps some other figure of medical authority? perhaps @dave30th may have an idea of how this could be done-otherwise the sausage machine will chunter on and more children will be fodder
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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.
 
MEMarge said:
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.
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The private forum area is certainly something do-able, PM me to discuss it further.
 
Sly Saint said:
"the majority of children get better with specialist treatment"

I haven't read it all but this claim is so vague. By 'get better' does she mean improve or recover?
As with most of her 'research' she rarely says how long it took them to 'get better'; I remember listening to the Radio4 (?) program where the reporter went with her to visit one of her patients who I think she had been 'treating' for four years(?) And there have been people saying that she doesn't do any follow ups for a lot of her patients. So does she just assume that if they stop going back for treatment they have 'got better'?
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From parents' forums, if the " specialist treatment" does not work you are discharged from the clinic' s care.
 
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."
 
Allele said:
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."
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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!
 
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