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Why patients with CFS/ME improve or deteriorate with graded exercise therapy

Kati

Patient in training
Messages
5,497
I am amused by the different comments on the non-sense from the flat-earth thinkers who have interests in the earth remaining flat for a long time.

Keep on talking, fellow patients. I have the feeling them flat-earth thinkers are reading all the comments. Then they will go cry to the tribunals that us bastards are against them. :rolleyes::rolleyes::rolleyes:

Keep on talking. Here, there and especially everywhere on social media. :thumbsup::thumbsup::thumbsup: #PACEtrial
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
To me, some parts of this read like a university term paper on "Catcher In The Rye"

*spittake*

a lab paper written by a student who really hadn't completed the assignment, so he tries to write his way around his failings.

As a science teacher and an editor, I can confirm that these are accurate descriptors.

For instance, in the conclusion, how scientific is "Our findings flesh out the deeper meanings..." Deeper meanings? This is testing an hypothesis, not plumbing the literary mechanisms employed by Salinger. Flesh out? As in a plot?

This is the thing about qualitative research. It IS meant to tell a story. The subject's story. Thinking about things on a deeper and more personal level than raw data can be important in psychology, education, and anthropology.

However, qualitative research, just like quantitative research, can be prejudiced by the interviewer's expectations and interpretations, and is even more susceptible to being yanked over to the researcher's narrative. This paper is clearly written to firmly express the researchers' point of view, not help construct narrative of subjects' point of view.

I've had this argument with both sisters (EdPhD and PAPhD, respectively). EdPhD always thinks I'm dissing qualitative research, when I'm dissing BAD qualitative research.

-J
 

Keith Geraghty

Senior Member
Messages
491
qualitative research should - like quantitative research - answer a question or inform, it should not be the role of the researcher to impose the answer or insert their own answer - this can be done in both qual and quant / both are open to bias; the biggest bias being the researcher. This paper is an excellent example of this.
 
Messages
36
I WANT TO STAB MYSELF IN THE EYEBALLS

BEING FORCED TO DO EXERCISE DESTROYED ME REAL QUICK AND I NEVER GOT BETTER

MESSAGE TO PSYCHIATRISTS - STOP FUCKING DESTROYING LIVES. IF YOU ARE GOING TO PRESCRIBE EXERCISE YOU HAD BETTER WELL BE DAMN SURE IT WON'T CRIPPLE THE PATIENT, LIKE YOU DID WITH ME.

ONCE WE HAVE A BIOMARKER I WILL BE SEEING YOU ALL IN COURT, WITH A PIECE OF PAPER IN MY HAND THAT SAYS, "ONCE THE PATIENT ACCEPTS THAT THEY DON'T HAVE A PHYSICAL DISEASE..."

HINT - I DO HAVE A PHYSICAL DISEASE
 
Messages
3,263
What a waste of £5m of taxpayers' money - blowing the randomisation, as a deliberate choice.
Oh but you see, behavioural therapies are SOOO beneficial, we wouldn't want to deny treatment to anyone for longer than 52 weeks, would we? It would be unethical!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Oh but you see, behavioural therapies are SOOO beneficial, we wouldn't want to deny treatment to anyone for longer than 52 weeks, would we? It would be unethical!

It was such a weird and destructive thing to do to the trial that I wonder if it was a tacit admission that the "specialist medical care" condition was recognised as a dud, from patients' point of view, even before the trial began - so that, in order to enrol people, they had to promise that, no matter which arm they ended up in, they could choose another treatment later, in the same way that patients are sometimes promised the active treatment later in a placebo-controlled trial.

It would be interesting to know the timing of the decision.
 
Messages
13,774
It was such a weird and destructive thing to do to the trial that I wonder if it was a tacit admission that the "specialist medical care" condition was recognised as a dud, from patients' point of view, even before the trial began - so that, in order to enrol people, they had to promise that, no matter which arm they ended up in, they could choose another treatment later, in the same way that patients are sometimes promised the active treatment later in a placebo-controlled trial.

It would be interesting to know the timing of the decision.

I think we've had participants (or maybe just a participant?) report that the offer of post-trial treatment was being presented as an incentive for enrollment, and there'd be less of a wait for it going through PACE than just going on a waiting list.