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GETSET (white) in Lancet 22/06/17

RogerBlack

Senior Member
Messages
902
I may have missed this in the thread.
Is there an official PR release for this paper from the organisation in question?
 

lemonworld

Senior Member
Messages
100
Location
Norway
“It is recognised that the diaries shown on p.10-11 of the GET booklet are rather complicated for participants to understand. They may require some explanation, breaking them down into sections.

What?

Everything about these people confuses me. It's like they say our problem is simply that we're unable to know how to live our lives. That we don't know how to shower and eat breakfast and get to work. Presenting a timetable as something groundbreaking?

GET has always confused me in it's juvinile simplicity (not to mention the poor quality of research). As if we're not competent enough to realize how to exercise, so they have to introduce us to the concept. And the argument I've heard given when GET practitioners are confronted with the fact that people get worse from exercise: "It won't be like that, because this is supervised exercise therapy". What kind of magical wisdom do they think they can give about exercise that will suddenly eliminate PEM? And how arrogant is it to think they know how our bodies respond to exercise better than we do?

GETSET Julie's schedule is like my perfectly healthy parents'. Everything about this is just so unbelivably confusing. Yes, it's complicated for me to understand. If they could please explain why they're creating and defending this research, and break down their motivation and thought process into sections, I'd appreciate it.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
It's like they say our problem is simply that we're unable to know how to live our lives. That we don't know how to shower and eat breakfast and get to work.

Bingo.

“It is recognised that the diaries shown on p.10-11 of the GET booklet are rather complicated for participants to understand. They may require some explanation, breaking them down into sections.

People -- particularly bright people -- seem to think that if you disagree, you must just not understand. The blank looks they get from patients are being translated into a lack of understanding rather than incredulous disagreement, I suspect.

People without background in instruction then continue to say the same thing in almost identical ways, over and over, to get you to 'understand'. Then it turns into argumentum ad nauseum: so long as they repeat it often enough, and you cease arguing with them, it means you must agree (or that you "finally understand", when the patient finally says, exasperated, yeah, doc, I GET IT, thanks). :rolleyes:
 
Blog about GETSET from Spoonseeker - https://spoonseeker.com/2017/06/29/do-get-yourself/
GETSET, the latest paper on graded exercise therapy by lead PACE investigator Peter White (et al), provides an excellent opportunity to probe into the nitty gritty of such a trial. The study required patients to administer their own GET so some of the details previously hidden by smoke and mirrors are laid bare in the explanatory booklet which served as the patients’ bible during the study.

Here are some quotes from the booklet (in blue) followed by my comments:

‘A GET programme will help you gradually improve your ability to undertake some of the physical activities that you have been unable to do since becoming unwell.’

The word ‘will’ seems optimistic here if we’re talking about ME. Though what illness are we talking about, I wonder? This guide refers to CFS/ME but the GETSET paper only mentions CFS. They need to be more specific about what they’re talking about.

‘However, a self-help guide such as this has not been officially tested so it is important that you check first with your GP or hospital specialist that a GET schedule is suitable for you. You should also continue to consult them regularly while undertaking your GET programme.’

Maybe they’re already wondering if that optimism of theirs was misplaced. This translates as ‘This therapy is totally, totally safe but make sure you tell some other doctors what you’re doing so we can blame it on them if it goes wrong.”
 

Forbin

Senior Member
Messages
966
Something I noticed about the Chalder Fatigue Scale is that, although the range of possible total scores is 0 to 33, the score of someone who reports that all of their symptoms are "no more than usual" compared to when they were last well is actually 11, not 0.

The scoring, where "usual" is defined as "when last well," works like this:

0 = Less than Usual
1 = No More than Usual
2 = More than Usual
3 = Much More than Usual

As you can see, an answer of 0 actually means that you are less affected by that symptom than "usual." In effect, an answer of 0 seems to mean that you are better than when normally well for that symptom - an interesting concept. :cautious:

So, a person who's affected "no more than usual" (=1) when last well on all 11 questions of the CFQ will score 11.
[see line A below]

But there are 15 other configurations (B thru P) that also add up to 11:

x1.jpg


Admittedly, these alternate configurations rely on one or more of the symptoms being "less than usual" when last well, but all of the lines of the chart produce a score equivalent to that of a person who feels no difference in impairment compared to his usual, "well" state on all questions (line A).

Also, for each line (B thru P), the individual values in the line can obviously be shuffled among the symptoms in numerous ways while still totaling 11.

The fact that such a wide range of profiles could apparently have equivalent scores does make one wonder about the validity of comparing scores, or groups of scores.
 
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Messages
2,158
The Chalder Fatigue Scale - when I looked it up when I first started looking at the PACE trial I couldn't believe what utter non scientific nonsense it is. At every level.

Not only the ridiculous idea of including a score difference between normal and better than normal, so a completely healthy person may rate themselves anything from 0 to 11, but a scale that fails to measure intensity of fatigue, and instead gives an apparently random list of descriptors of fatigue and counts how many of them apply.

In no way can this measure degree of fatigue, but it's very useful for unscrupulous researchers doing psychobabble therapies, because all you have to do is persuade patients that fewer descriptors apply to them. The degree of fatigue could stay the same or get worse and still come out better on this scale.

My contempt for people who developed and use this so called measure of fatigue is off the scale!
 
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Tom Kindlon

Senior Member
Messages
1,734
I just submitted a letter in reply to the GETSET trial.

It covered two slightly obscure points. I think they are important but it does mean there are plenty of other points people can raise so I hope people do write in.

The deadline is 2 weeks from publication which was Thursday, June 22 so that would mean either Wednesday, July 5 or Thursday, July 6. So not that much time.

The letters can't be too long: 250 words or less, with 5 or fewer references. So still plenty of time to write a letter.

Instructions here http://www.thelancet.com/pb/assets/raw/Lancet/authors/tl-information-for-authors-may-2017.pdf for authors but you may not need any more details at this stage. If people have draft letters, I might have time to look over them if people want to send me a draft. Don't post it publicly of course.

Submission to the Lancet.JPG