Guided graded exercise self-help for chronic fatigue syndrome: Patient experiences and perceptions, 2018, Cheshire et al

Is there a definition as to what constitutes recovery ?

 

No definition for recovery was given for this study, but then they didn't publish data either on recovery in this study.

 

This study gave us GETSET Julie:
https://twitter.com/user/status/879293060571693056

https://twitter.com/user/status/879286429876199424

https://twitter.com/user/status/879315684437700608

https://twitter.com/user/status/879010420304031744

https://twitter.com/user/status/879752172036075521

 

https://twitter.com/user/status/882167527949950976

https://twitter.com/user/status/906944085432393728

 

I think the lack of defined recovery (and potentially lack of consistent recovery definition) and relative stats is something that NICE should be made aware of during the guideline process.
How can you claim recovery without such basic information?

 

Or cooking all those cakes that are going to cure us...

 

Is Getset Julie propaganda, i.e. invention, or is she supposed to be real?

 

I know the answer to that - yet - don't know the answer to that...

She is an example person in the GETSET user guide (now off-line?), if she is a real person or not we don't know - but very revealing in how the researchers themselfs think of patients.

Patients just took the example data and run with it - but she was supposed to seek treatment for ME/CFS, yet working a full week and other activities. Oh, and they suggested stopping her "boom-bust cycle" - by adding even more activity to her schedule.

Spoonseeker tells you all you need to know

https://spoonseeker.com/2017/07/03/spotlight-on-getset-julie/

 

More like crystal meth cake. How do you think she really gets her abnormal levels of energy? The real truth is out there sheeple

 

It seems plausible that someone like this who was so grateful to the physiotherapist might give biased responses about how much the therapy was helping.

*But was it really working? Open-label trials aren't necessarily reliable, especially with subjective outcome measures.

 

Doesn't sound like the participants would have been able to give informed consent.

 

so it's imaginary, i.e. "this is where YOU could get to with OUR program"?

 

I wonder whether people really suggested they needed CBT or whether this is spin?

The mental activity point is a good one, and is generally ignored by graded activity approaches for ME/CFS where you are encouraged to do the same amount and then increase but there is no suggestion you should decrease with more mental activity in anything I recall reading.

 

Yes, we are fed a constant diet of people saying exercising is good for you. If anything, I think patients need to be warned this might not be the case with ME/CFS.

Except that the model is very likely flawed. People's symptoms vary and how much they can do before provoking symptoms can vary, which is hard to explain by the deconditioning model. Similarly, there have been dozens of studies finding abnormalities that can't be readily explained by deconditioning.

 

There is zero chance this is true. This is exactly like Trump's "people are saying". They are putting their own words into people's mouths. The idea that patients would voluntarily suggest CBT is laughable.

 

Paper was received by the journal in August, 2017