@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]
@postersandme @keithgeraghty “recognises that thoughts,
feelings, behaviours and physiology interact with each other
experience of their symptoms and the challenges these present.” [2/2] Image
@postersandme @keithgeraghty And aiming & claiming it increases physical function/reduces disability .

“Aims to improve functioning” ,
With improved and reduced function relationship to distress

“risks and benefits of adapting to the impact of symptoms
#pacetrial predominate evidence 4 IAPT expansion
@postersandme @keithgeraghty “ exploring their personal meaning of symptoms and illness and how this might relate to how they manage their symptoms”

Adapting their sleep activity and rest to improve functioning Image
@postersandme @keithgeraghty Pace of CBT to increase functioning to include longer term goal for Severe patients Image
@postersandme @keithgeraghty CBT to increase activity and work toward goals Image
@postersandme @keithgeraghty Delivered by someone with expertise in CBT for #MECFS

#PaceTrial is included in training of high intensity therapists delivering specialist CBT for #MECFS in IAPT expansion to long term conditions and medically unexplained symptoms which is is predominant evidence for Image

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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
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 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
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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