"Why Wasn’t My Experience Of Attending An NHS CFSME Clinic Evaluated?" (Disabled In Tory Britain)

[Dolphin]

http://disabledintorybritain.com/20...e-of-attending-an-nhs-cfsme-clinic-evaluated/

Here's the most interesting part, I thought:

Why wasn’t I evaluated?

At no point during the time I was a patient at the NHS CFSME clinic was I handed an evaluation form. Not even after I did Graded Exercise Therapy – when I had an injury and when I told the physiotherapist of this, was asked why that would stop me from doing exercise.

My experience of increasing symptoms through attending the CMT will never be formally captured, neither will the experiences of the other people who didn’t complete it either.

CB told me that only half of the CMG who started the group finished it.

The interaction with the physiotherapist who suggested that I could continue exercising and didn’t ask the extent of my leg injury before giving me that advice will also never be fed back.

I think this is blatant gerrymandering of patient evaluations in order to capture the opinions of those most capable of attending an 8 week CMG.

The evaluations will capture those that are likely to be higher functioning MECFS patients. This is called research bias.

When this data is fed back to the clinical managers, were the managers aware that people are being selected based on criteria that automatically show a bias?

If so, what does that say about the clinical managers’ interest in hearing views from the broader patient group or the team in hearing things that did not necessarily support their treatments?

 

[Woolie]

I seem to remember that PACE used intention-to-treat analysis (that is, counting all withdrawals as failures). BUt I can't remember the details.

 

[Dolphin]

I seem to remember that PACE used intention-to-treat analysis (that is, counting all withdrawals as failures). BUt I can't remember the details.

Yes, what she says wouldn't apply to the PACE Trial's analysis.

 

[Esther12]

I seem to remember that PACE used intention-to-treat analysis (that is, counting all withdrawals as failures). BUt I can't remember the details.

That's what I'd vaguely remembered, but I just read someone else (somewhere?) saying that they hadn't done this in the normal way. (I've not checked details, but thought I'd rumour monger as you just happened to mention this point).

re assessment as a part of routine care: This has always seemed like something which could be skewed by me, unless it was done independently of those providing the service.