@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 Image
@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 Image
@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/… ImageImageImage
@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

@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… ImageImageImage
@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…
@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
@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
@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.”

@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

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More from @consent_patient

30 Aug
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 👇 the NICE #MECFS guideline update/replacement is a sham - more of the same contraindicated behavioural rehabilitation
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
Read 18 tweets
29 Aug
@postersandme @keithgeraghty Energy management is Activity Management rebranded as Pacing #MEinterventions

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 @keithgeraghty @4Workwell They been providing “activity management” already at specialist behavioural services

Maybe they created a stink pausing the publication so that patients demand it’s published,to show that patients support the guideline ?

There should be a round table as this is just rebranding
Read 37 tweets
29 Aug
@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 )

Yet it still retains it …[1/3]
@keithgeraghty Image
@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]
Read 10 tweets
28 Aug
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 Image
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 Image
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 ImageImage
Read 7 tweets
24 Jul
@sepidgar2 Philanthropic endeavours - a great disguise for terrible crimes

As is the #CrimesAgainstHumanity currently committed under the disguise of “sustainability “
@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
Read 11 tweets
22 Jul
How are doctors and fairing with providing informed consent when lawyers reiterating this right are being intimidated by the police ?

If you haven’t yet realised the tyranny we are living under

Supreme Court ruling in Montgomery Vs Lanarkshire Health Trust , “replaced medical opinion with the informed decision of the particular patient.”

“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.“

Read 12 tweets

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