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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Not sure why charities are asking patients to support the publication of the NICE #MECFS guideline update when the final version hasn’t been made available to view to see if stakeholder comments were included and what changes if any were made . The draft guideline is diabolical!
Thread 👇questioning independent guideline evaluation ,and IAPT expansion , part of the Five Year Forward View ,and the commissioning of “NICE” guideline development to Royal Collage Collaboration Centers #MECFS update
Note analeptic anaerobic energy management by @4Workwell is not mentioned by name or pacing .
Nor is #2dayCPET mentioned in identifying PEM in making diagnosis and contraindicated aerobic exertion
@postersandme@keithgeraghty@4Workwell#MECFS NICE guide update rebranded Activity Management ( recommended in the previous guideline due to similarities with GET and includes all activity types & had no definition or evidence bace ) , as “Energy Management” .Claiming it achieves stabilisation & Activity tolerance !
@postersandme What specialist knowledge & approach do dieticians & paediatricians have ? A specialist interest in medically unexplained symptoms behavioural approach 2 CFS ? That patients being referred 2 by NICE guides .What evidence used 4“supportive” CBT by specialist in CBT for MECFS ?
@postersandme NICE #MECFS guide replacement mentions “supportive” CBT does not “assume” people have abnormal beliefs and behaviour as underlying cause (as is the CBT model for specialist CBT for MECFS from a behavioural perspective )
@postersandme@keithgeraghty Yet it still retains the same behavioural BPS mind body perception distress approach and principles of management , to increase activity + reduce disability under guise of well-being and quality of life being: [1/2]
@MrTopple@TheChronicColab Here are some pointers on the previous 2007 #MECFS guideline which recommended antidepressants , activity management , sleep restriction and PEM management with no evidence bace . Have they done the same with the replacement guide twitlonger.com/show/n_1sqlvok
@MrTopple@TheChronicColab Does replacement guide mention post exertional malaise by name & that it objectively tested via 2dayCPET or does it make non evidence based recommendations for setbacks & relapses again? NHS website Still claiming “pacing”no evidence & not explicitly stating all areasno evidence
@MrTopple@TheChronicColab NICE comment on pause of the guide says “The guideline recognises that ME/CFS is a complex, multi-system, chronic medical condition”
Does it state this in the replacement guide . Wasn’t aetiology and pathology excluded from the scope ? Not included in evidence review questions
@sepidgar2 Philanthropic endeavours - a great disguise for terrible crimes
As is the #CrimesAgainstHumanity currently committed under the disguise of “sustainability “
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@sepidgar2 Including funnelling children into abusive social care system via increasing false accusations of factitious induced illness & medically unexplained symptoms ,under the guise of “parity for mental health “ & “sustainability” of private NHS joint providers of health & social care
@sepidgar2 Including negative affects of geo engineering on the natural world & #climate
Seeding oceans, stratospheric aerosols , blocking the sun with dust, to “save the planet from climate change”
As we “save the NHS” through #MUSviolationsHour of the chronically ill & vaccine injured
“The doctor is therefore under a duty to take reasonable care to ensure that the patient is aware of any material risks involved in any recommended treatment, and of any reasonable alternative or variant treatments.“