Health related quality of life in adolescents with chronic fatigue syndrome: a cross-sectional study

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4490669/pdf/12955_2015_Article_288.pdf
(Open access)

This was published a few months ago, but doesn't seem to have been posted here.

 

Any idea what criteria they used to identify so-called CFS patients? Or are these simply chronic fatigue (the symptom) patients?

 

Yup. It's pretty broad and doesn't match any diagnostic criteria that I know of.

They did find a pretty high level of disability.
with adolescents maybe there are less possible mis-diagnoses? ( less chronic illness in general, and possibly more thorough testing when it is a child with very ill health)?
Just a guess though.

Also annoying/odd they seem to be screening out blood pressure abnormalities as these are pretty standard with ME. Not sure on the figures for adolescents specifically though.

 

If they excluded patients with these features, and still got a low level of QOL, imagine how much lower it would have been if those patients had been included.

 

Are there any other diseases where researchers get to define the disease any way they want and claim their results apply to the patient community in general?

Isn't there some kind of requirement that if they are claiming to study a certain disease they should use some established definition and state in their abstract what definition they used so that readers know to whom the research applies? Of course there isn't.

If I'm researching something about squirrels, do I get to include any rodent and say my conclusions are about squirrels? If I'm researching treatments for emphysema, do I get to include anyone with a cough and say the results apply to emphysema patients?

Sometimes I think medical research has the sloppiest methodology of all types of research... and that's saying a lot. (I know that's probably not true, but this kind of thing is so appalling and infuriating, it's hard not to think the worst of medical so-called research).

 

.
Vegard Bruun Wyller is the paediatrician who has strongly promoted Lightning Process in Norway.

 

Come on down, Six Sigma.

Yeah, I know, not realistic for the messier world of medical research. But we can dream.

 

If that isn't a warning sign, I don't know what the hell is.

 

Okay, Sigma 6 may be more than they can handle. But surely they can do better than they're doing currently. I will continue to hope and dream.

ETA: And rant and rave.

 

Winger's doctoral thesis
"Pain and health related quality of life in adolescents with chronic fatigue syndrome - A mixed method study" is available here:

https://www.duo.uio.no/bitstream/handle/10852/48180/PhD-Winger-DUO.pdf?sequence=1&isAllowed=y