@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
Does it state this in the replacement guide . Wasn’t aetiology and pathology excluded from the scope ? Not included in evidence review questions
@MrTopple @TheChronicColab NICE pause statement on #MECFS guide also says people getting help they need ? But what did it actually recommend for a multisystemic disease ?Antivirals & supplements not recommended again . Any testing for recognised cardiac abnormalities this time ? nice.org.uk/news/article/n…
@MrTopple @TheChronicColab The scope of replacement #MECFS guide & previous one didn’t evaluate aetiology & pathology or research on metabolic symptom mechanisms. omits stating this explicitly in the scope of areas it includes &excludes The scope defines MECFS as having no certain disease process aka MUS
@MrTopple @TheChronicColab The scope refers to “lifestyle advice” such a graded activity ,with GET listed separately .Rehabilitation still a remit it seems ,as included . The 2007 guide was issued a remit for rehabilitation . nice.org.uk/guidance/cg53/…
@MrTopple @TheChronicColab Other “Lifestyle “ advice like sleep restriction in #kidswithME with known impaired energy metabolism is rendering children tube fed . Ignoring systemic review on sleep abnormalities in #MECFS and metabolic research on impaired energy metabolism and post exertional malaise
@MrTopple @TheChronicColab What evidence supports “lifestyle advice” “self management” like activity programs and sleep restriction ? How is it evaluated for its contraindications when identified biological research on symptom mechanisms is excluded from scope , including excluding comorbidities again
@MrTopple @TheChronicColab What tests were recommended for a mutisystemic disease ? Adrenal stress profile ? Any metabolic testing that Parliament said wasn’t available and NICE had to evaluate ? Any cardiac testing or monitoring for recognised cardiac abnormalities? 2 day CPET testing for those able ?
@MrTopple @TheChronicColab Parliamentary question asking if what auto immune and metabolic testing is provided by the NHS for #MECFS
Answer that CCGS are responsible for commissioning and NICE does not recommend routine autoimmune or metabolic testing for #MECFS
questions-statements.parliament.uk/written-questi…
Answer that CCGS are responsible for commissioning and NICE does not recommend routine autoimmune or metabolic testing for #MECFS
questions-statements.parliament.uk/written-questi…
@MrTopple @TheChronicColab IAPT expansion to longterm conditons and medically unexplained symptoms considers MECFS as a mental health problem descriptor & a a specific form of medically unexplained symptoms .The replacement #MECFS guide and other NICE guide are used in this pathway rcpsych.ac.uk/docs/default-s…
@MrTopple @TheChronicColab Chronic pain in the context of anxiety and depression is also considered a mental health condition in this pathway ,as is irritable bowel syndrome and medically unexplained symptoms . With this pathway being required for commissioning by CCGS as part of the Five Year Foward View
@MrTopple @TheChronicColab NICE commissioned a number of the guidelines used in this pathway including #MECFS replacement guide to the National Guideline Center( royal collages ) to develope from start to finish, including selecting committee . A NICE executive then signs it off . rcplondon.ac.uk/about-us/what-…
@MrTopple @TheChronicColab This pathway development was commissioned by NICE to the National Collaborating Center for Mental Health to develop (royal collage psychiatry and university college London ) rcpsych.ac.uk/improving-care…
@MrTopple @TheChronicColab Royal collages have a joint position statement on treatment of longterm conditons and medically unexplained symptoms symptoms
With National collaborating Center for mental health supporting objectives of the Five Year Forward View which - IAPT expansion rcpsych.ac.uk/docs/default-s…
With National collaborating Center for mental health supporting objectives of the Five Year Forward View which - IAPT expansion rcpsych.ac.uk/docs/default-s…
@MrTopple @TheChronicColab With Royal Collages also part of the joint commissioning panel for mental health that produced commissioning guidelines that are used for the implementation of this pathway expansion #JCPMHmusreport google.co.uk/amp/s/opposing…
@MrTopple @TheChronicColab The 2007 #MECFS guide was commissioned by NICE to the National collaborating Center for Primary care to develop (Royal Collage of general practitioners). In 2009 it and other Centers (royal collages) became the National Guideline Center we have today guidelinesinpractice.co.uk/the-national-c…
@MrTopple @TheChronicColab NICE is also in strategic partnership with other “arms length bodies “ to deliver the objectives of the Five Year Forward view and the Five Year Forward view for Mental Health simonwessely.com/Downloads/Blog…
@MrTopple @TheChronicColab “NICE “ depression guideline update, also developed by the National Guideline Center , is used in IAPT expansion & uses the DSM5 to diagnose BOTH know & unknown pathology with somatic symptoms disorder . A diagnosis under the MUS umbrella #DSM5revision
https://mobile.twitter.com/consent_patient/status/1230189690516627456
@MrTopple @TheChronicColab NICE depression guide update for iapt expansion is using #Dsm5revision to diagnosis MUS umbrella of /functional somatic syndromes /health anxiety / somatic symptoms disorder in both known and unknown pathology
https://mobile.twitter.com/consent_patient/status/1230312737760301057
@MrTopple @TheChronicColab Royal collage CPD training mentions
MUS “We will use it here to include functional somatic syndromes (FSS) and other newer descriptors, such as somatic symptom disorder (SSD) and health anxiety, which will be explained later.”
storage.cloudconvert.com/tasks/3d25866b…
MUS “We will use it here to include functional somatic syndromes (FSS) and other newer descriptors, such as somatic symptom disorder (SSD) and health anxiety, which will be explained later.”
storage.cloudconvert.com/tasks/3d25866b…
@MrTopple @TheChronicColab NICE #MECFS draft replacement guideline in the “context”section mentions MECFS is a chronic multisystem medical condition as mentioned in the IOM report ,that Mark Baker emails above are ignoring. This classification not mentioned in body of the guide which mentions fluctuating
@MrTopple @TheChronicColab The context section NICE #MECFS draft mentions GET as being contentious not aerobic rehab contraindicated .Also that studies coming & another update .No mention misleading research & harm instead uncertainty about effectiveness from patients & providers
https://mobile.twitter.com/consent_patient/status/1431743749739196416
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