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Amanda Rankin Personal opinion #LearnAboutMECFS #PostExertionalMalaise #IatrogenicPEM #OpinionNotEvidenceBased #systemicFailureInHealthcare #IAPTLTCMUS

Aug 28, 2021, 7 tweets

NICE MECFS replacement guideline doesn’t mention objective post exertional malaise . Uses setbacks & relapses again as in 2007 guide

It mentions post exertional symptom exasperation instead in severe section

& mentions fear of relapse or post exertional symptom exacerbation

NICE MECFS guide context section started MECFS is a multisystemic disease .

No mention aerobic activity rehabilitation is contraindicated

It says GET and it’s evidence bace is “controversial” and further research being done and another update

The context section says no Brain inflammation

Post exertional symptom exasperation (used for PEM) defined in terminology list as being days weeks long .Not months years

No mention objective not subjective symptom proven via two day cpet test & of impaired energy metabolism

“Flares” & managing “setbacks & relapses” defined separately

Guide 2007 had no evidence 4 managing “setbacks & relapses/PEM” & didn’t recognise #2daycpet

Nature #MECFS & PEM still not defined/recognised & not in scope

Says no brain inflam. #MECFS is inflammatory disease

Yet the NICE #MECFS replacement guideline has included physical maintenance and physical activity and energy management . With these defined in the terminology section of the guideline .

It’s also says regards using term MECFS that little evidence of pathological Brian inflammation - indicating the disease isn’t pathological , that “NICE” doesn’t consider a pathological perspective , but a behavioural one .

Which was outside the scope of the evidence review

Context section “people” consider CFS too broad simplistic & judgemental.

No,that proven impaired energy metabolism, in any patient,being made a functional somatic syndrome /symptom problem descriptor in IAPT ,under umbrella non organic MUS by misleading psych social research

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