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
There is much wrong with the #MECFS guideline update /replacement guide which is used in to be used in IAPT expansion to longterm conditions and medically unexplained symptoms. Please read these two thread above

@davidtuller1 @JoanMcParland @newhealthpsych
The guideline is not an improvement on the 2007 guideline . I have done a write up on the previous guideline which I have included in the thread . The replacement guideline is even worse . I have detailed why
They did the update to better coordinate for IAPT expansion , and retained and rebranded what already provided .Included regular reviews for children and yearly reviews rehab management plan and benign looking physical maintenance (sitting standing ect for #severeME ) ect
More deception & rebranding of interventions using same principles making same claims ,including adding in prevention of severe disability ,#severeME

behavioural specialists still considered 2 implement the same harm ,without harm, & considered “controversial” & more 2 come
Much of the NICE guide update #MECFS mentions experienced committee recommendations are without evidence ,as in the previous 2007 guide

Intervention composition and management, how long viral illness persists drawn from their own knowledge and experience and beliefs
The committee couldn’t give a list of tests 4 diagnosis tests or signs and symptoms for a later diagnosis of #MECFS ?

How about post exertional malaise being defined & a two day CPET test recognised ?

Mix & match criteria mentioned [IOM criteria 2 make suspected diagnosis]
From terminology used in the #MECFS guide update .

Therapy blueprint 4 independent self management need 2 be in patients own words guided by therapist.

A patient was asked to sign a document ,to be sent to GP, saying she was in “recovery ” meaning living a managed lifestyle
They increasing the number of patients being contracted with management plans /accountability 2 manage their symptoms /activity. Facilitated with more home visits 2 #severeME

2 reduce resources,claim prevention, & blame patient 4 severe disability.

Whilst providing harm
The Center for welfare reform report called In the Expectation of Recovery explains how the biopsychosoicial model was abused to put more accountability on the disabled . It also mentions the #PaceTrial…
Two #PaceTrial authors directors of company One Health .Set up 4 promotion of a system of healthcare based on a biopsychosocial model,  being a model that incorporates thoughts, feelings and behaviour with a physiological approach to health and illness .…
This same model of CBT and activity management has been retained in the #MECFS guideline update and is predominate misleading evidence 4 IAPT expansion 2 long term conditions & medically unexplained symptoms where all symptoms are normalised as being mind body/ biopsychosoicial
It goes beyond use in welfare work capability assessment- covered by Mo Stuart book Cash Not Care.

Also reduces spending 4 private joint health and social care providers transforming the NHS . Called integrated care systems/ sustainability and Transformation Partnerships
Patient experience is what designed 2 achieve & why it continues

Acquired illness - deterioration via biopsychosocial behavioural rehab- taking children away-resources

One Health building on biopsychosocial model & Eco Health taking planetary approach @RandPaul @ChildrensHD
@RandPaul @ChildrensHD “ Healthcare systems have become quietly corrupted”
“ Global healthcare system wherein criminal activities have become normalised”
“ many countries most corrupt sector” “shared motives” “ doctors and patients attacked”…
@RandPaul @ChildrensHD The biospychsocial model of distress and behavioural rehabilitation academic state corporate nexus…

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More from @consent_patient

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
28 Aug
@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
@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
Read 26 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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