Q for those with more in-depth knowledge of PACE...
One of the primary Outcome Measures was the "physical function subscale" of the SF-36.
I can't see anywhere an explanation of how they totalled up the scores from this...
... but this fascinating review looking at the use of the SF-36 notes that scoring requires the use of special algorithms, and has found a massive discrepancy in how studies have chosen to use it and tried to score it... ncbi.nlm.nih.gov/pmc/articles/P…
... the review concludes: "In our opinion, calculating a SF-36 Total/Global/Overall Score is a measurement bias (a systematic error) that can lead to a measure with poor validity... (cont)
... and "study results based on a measure (SF-36 Total Score) with questionable validity may produce negative effects on individual and community health and waste public and private resources"..
Just wondering if anyone knows any more details on how the "physical subscale" was actually used 🧐
And a fantastic criticism and response going on in the early 2000s...
"current PCS MCS scoring procedure inaccurately summarizes subscale profile scores and should therefore be revised." pubmed.ncbi.nlm.nih.gov/11763202/
The slightly frustrated response from the developers:
"we again repeat our 7-year-old recommendation that results based on summary measures should be thoroughly compared with the SF-36 profile before drawing conclusions. " pubmed.ncbi.nlm.nih.gov/11763203/
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With the #NICE roundtable happening on Monday to discuss concerns over the updated #ME guidelines, let me address a key concern about removing GET - that there would be a "reduction in services".
Here's what a specialist ME service could do without GET.../1
Take basic objective measurements, like HR and BP, using them in tests like the NASA Lean test to screen for orthostatic intolerances and refer on as required /2 batemanhornecenter.org/wp-content/upl…
Use Heart Rate monitors to take 2 weeks of baseline data alongside an activity diary, then use that data to;
a) identify stressors (& provide adaptive aids to modify these)
b) re-organise activities to allow for restorative rest
Any treatment plan should be based on the best available evidence base.
So when considering exercise for ME, let’s take a look at the evidence.
A thread...
Some RCTs have shown improved subjective fatigue and physical function with graded exercise.
But there have been no demonstrable changes to objective outcome measures.
And subjective outcomes fail to remain significant in comparison to controls at 12 month follow up.
Subjectively, a review of 10 patient surveys from across the world found that 51% of respondents reported graded exercise therapy made their health worse