Quality and acceptability of patient-reported outcome measures used in CFS/ME

[Firestormm]

alex3619 would you not though have to build in recovery times somehow? I mean into the subjective and the qualitative/objective? You need to try and compare and measure like-for-like.

Anyway, my point really I suppose was that I don't believe science can have all the answers here, and like Simon I would not rule out a need for patient feedback, but I think the questionnaires used need to be better considered: perhaps relevant to each disease and not to 'fatigue' as a stand-alone generic symptom.

But maybe this is will all prove irrelevant or redundant if we can establish a better biomarker than over-exertion and recovery. I don't place much faith in actometers myself or in the studies pertaining to PEM thus far. I think the latter will require significant replication and we will still be far from proving exercise is unique to ME.

Sure, you can use objective measures like actometers and relation to benefits and employment (though those two can be seen as subjective also depending), to compare with the subjective questionnaire and to test efficacy; but I demand more.

Whenever someone comes up with something - like repeat exercise testing - I want to see it attacked and then defended and then repeated and replicated independently. I no longer trust our own research I am afraid.

And I - like others - am rather bored with saying 'interesting' all the time

 

[peggy-sue]

Thanks for this comment, Alex - it was what I was trying to say...

"More to the point, claiming that subjective data is objective is misleading. Whether this is deliberate or just really bad science is a matter of debate"
I agree with you completely.
There are loads of easy ways of measuring our physical limitations and weird metabolism.
I still do not have, and have never had "fatigue".

Measuring oxygen consumption etc. is easily done with an exercise bike, holter monitor and breath collection.

I've asked my gp to test me - so that I could prove physical abnormalities to him.

He refused on the grounds that "the facilties were not available". He does tell outright lies to me.
It's a second year Physiology practical class done at uni.
I've done it. The equipment is available locally - and it's not even that expensive to do.
The university is a medical school - I do not understand how university teaching equipment cannot be available to patients occassionally - students have long holidays.

 

[biophile]

Significant impairment is obviously an important aspect of ME or CFS, but subjective symptoms are still fundamental. I hope we have some standardized universally accepted/available objective tests soon.

What seems to be important is having a range of measures, which helps to compliment the others and minimize the limitations in relying on a single type of measure. Actometers worn around the ankle offer interesting data but would fail to capture some activities we find demanding, such as washing dishes. Exercise testing is promising but demanding.

Firestormm does raise a relevant point about the milder affected patients who are able to push through symptoms to some extent and minimize the appearance of disability on some measures such as actigraphy. As Alex hinted, actigraphy for these patients may still show some (subtle) differences.

Furthermore, I am willing to bet that mildly affected ME patients who demonstrate similar actometer counts as sedentary healthy people still have significant pathophysiological differences to explain the symptom burden.

On average, ME and CFS patients are just as impaired as patients in a range of serious diseases, but I do not want to see mildly affected patients thrown under the bus either just because they are not housebound or worse. Some of them may still be in the earlier stages of their descent into illness. I sometimes dream of the otherwise-distressing "good old days" when I was still mildly affected. Cancer and MS patients, for example, do not need to experience a 50% reduction in function to be diagnosed, but disability can worsen later as the disease progresses.

It would be good to have objective physiological parameters and biomarkers to confirm the presence of ME without depending just on current impairment levels and reported symptoms. It may also help prevent may people for becoming worse after being conned into thinking that pushing through symptoms is the best solution.

There should also be biological differences between those who have severe disabling post-viral fatigue for several months but basically recover soon after, and those with ME who have been struggling for years on the border of normal function but do not meet the criteria of having a 50% reduction in activity levels.