Research studies re CFS patients 'Typical Day" with out regard to variation

[dean]

One way to evaluate any study of fatigue is to ask yourself how they looked at activity levels. Did they take variation into account. If they didnt, time to put on your skeptic hat.....This is an example of how not to do it....

Originally Posted by glenp
4. The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much?
(check one on each line) ACTIVITIES

Yes, Limited A Lot

Yes, Limited A Little

No, Not Limited At All

(many activities then listed)
​

TYPICAL DAY ????? Any study of CFS that asks patients questions like this ignores the periodicity of the disease will produce confusing results....This can't be stressed enough.....You can be good one day, and bedridden the next, variations can exist between days, weeks, months or even years. This has been shown in this forum over and over again......... Any analysis based on questions that ignore variation of fatigue / exhaustion levels and then attempts to to correlate these levels other phenomenon will be worthless....or worse.... This is Survey 101,

The waxing and waning of the disease, has to be taken to account in any research that looks at activity levels. Whoever is writing these questions doesnt seems to have talked to many patients with CFS and or is missing a basic aspect of this syndrome. It is something that should be delt with in every study that purports to study CFS.

 

[Dolphin]

FWIW, that question is from the SF-36 which is a generic questionnaire. One advantage is that it allows comparisons with other illnesses and healthy people as there is a lot of data.
People can get themselves scored at: http://www.sf-36.org/demos/SF-36v2.html if they are interested (i.e. a computer program will tot up the score).

Some questionnaires I have seen do ask about over the last month or six months.

 

[BEG]

"The waxing and waning of the disease, has to be taken to account in any research that looks at activity levels. Whoever is writing these questions doesnt seems to have talked to many patients with CFS and or is missing a basic aspect of this syndrome. It is something that should be delt with in every study that purports to study CFS."


I've had to answer these types of questions in doctor's offices. I write in bold at the top something to the effect that I'm answering as if I were in a relapse, or answering as if it's a bad day. "Can you lift a gallon of milk?" Well, yesterday I could lift it several times. Today, I'd be lucky if it didn't fall to the floor. CFS is never consistently the same. Some days are better than others. Thank goodness.