@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
@postersandme @keithgeraghty @4Workwell After all it’s the National Guideline Center ( collaboration of Royal Collages ) that developed the guide from start to finish with NICE executive signing it off . Committed to support the Five Year Forward View objectives including IAPT expansion
@postersandme @keithgeraghty @4Workwell There is no independent evidence evaluator that isn’t supporting the objectives of the Five Year Forward View .With Wessely wife also just becoming president of the Royal collage of GPs and also stating this abs Crawley research to consider
@postersandme @keithgeraghty @4Workwell “NICE” 2007 #MECFS guide had no evidence 4 graded exercise therapy 4 children & severe ,activity management no evidence bace . Opinion not evidence based recommendations extrapolated from 5 studies on GET, one of which showed it reduced VO2 Max by 15% What they use this time ?
@postersandme @keithgeraghty @4Workwell #KidsWithME get referred to a Paediatritian with a “specialist” interest in #MECFS . Specialist behavioural rehab interest ? All recommend & provided & taught? “NICE” guide 2007 was issued a remit 4 rehabilitation. The update still provides that from a behavioural approach
@postersandme @keithgeraghty @4Workwell “NICE”state no supplements .What if a patient has deficiencies on testing ? Only vit D mentioned .They make behavioural rehab recommendations with no evidence + contraindicated, but never enough evidence 4 antivirals & supplements there is evidence 4 .Comorbidities excluded again
@postersandme @keithgeraghty @4Workwell If you deteriorate , drop out , are a non completor , non compliant with your “management plan” you can come back when you able to resume . Also reviews mentioned a lot . IAPT LTC MUS in continual loop and referral also via “well-being” invites
@postersandme @keithgeraghty @4Workwell “Management plan” includes physical maintenance, physical activity, all activity types /activity management/GET rebranded as energy management -energy envelope , and behavioural CBT to increase activity which also incorporates sleep
@postersandme @keithgeraghty @4Workwell NICE #MECFS guide update : patients referred 2 behavioural “specialist” 2 develop a behavioural rehab management plan - “specialist” “MECFS” : Paediatritian ,dietician , CBT therapist .GP consult a behavioural specialist 2 identify “signs and symptoms” (also used 2 identify FND)
@postersandme @keithgeraghty @4Workwell #severeME & those have had #MECFS for a long time referred 2 “specialist” physio & occupational therapy services

I presume this inpatient behavioural rehab units the #JCPMHreportMUS commissioning guide 4 IAPT expansion mentions ,not time limited but dependent on improvement?
@postersandme @keithgeraghty @4Workwell NICE draft guideline #MECFS mentions “energy management” plans for #severeME . This is activity management/graded exercise therapy rebranded as “energy envelope” to sound like pacing . Increasing activity. Likely based on no research as was the 2007 NICE guide did the same
@postersandme @keithgeraghty @4Workwell “Physical Maintenance” also provided for #severeME in “management plan” & to consider cardiac health , yet no mention aerobic rehab contraindicated ,impaired oxygen utilisation ,cardiac abnormalities ,as rehab focus again & committee opinions not biomedical symptom mechanisms
@postersandme @keithgeraghty @4Workwell Heart rate monitors are mentioned again manage activity , but no explanation why . Previous 2007 guide used them 2 ensure patients were in aerobic zone ,for GET aerobic rehab .
NICE draft #MECFS removed increasing activity via fixed increments but retained “physical activity”
@postersandme @keithgeraghty @4Workwell “Physical activity” follows the same principles and claims as #gradedExerciseTherapy

Feel ready -Baceline - increase activity - that activity tolerance improving physical function can be maintained and increased.

Supported by behavioural CBT which has also been retained
@postersandme @keithgeraghty @4Workwell Claiming physical activity improves #MECFS “physical ability” & still attempting 2 define subgroups that benefit .Mentioning some find it makes “symptoms” worse ,but once again from a patient symptom perception perspective not that aerobic rehab is contraindicated & deterioration
@postersandme @keithgeraghty @4Workwell Advice on “setbacks and relapses” given and can resume the “physical activity program” after “flares” have stabilised
@postersandme @keithgeraghty @4Workwell Reviews once a year of management plans including for children which include the “effectiveness of symptom management” and activity management . “Specialist” teams to be contacted if deterioration and for advice for interpreting signs and symptoms. “Signs and symptoms”/ MUS
@postersandme @keithgeraghty @4Workwell Sleep restriction & no daytime sleep as used in “specialist” behavioural rehabilitation clinics & “specialist” behavioural experts in #MECFS isn’t mentioned explicitly in the NICE guide update . Which remain vague on the role of rest and sleep abnormalities. Rest is structured!!!
@postersandme @keithgeraghty @4Workwell Structured rest and sleep reduction and sleep restriction “lifestyle” advice has resulted in deterioration of #KidsWithME . This is not the only account of a child becoming tube fed
@postersandme @keithgeraghty @4Workwell With “specialist” services recording activity and rest not post exertional malaise in activity charts and services and research also not recording harm
@postersandme @keithgeraghty @4Workwell The #MECFS NICE guide update retains Structured sleep & rest reduction & limiting . “How much ,how long , how often”

Relaxation/rest periods also often replace sleep

Management plans increase exertion/activity and include STRUCTURED rest and sleep reduction

No daytime sleep
@postersandme @keithgeraghty @4Workwell They Increase activity/exertion with structured sleep and rest reduction ,

then further increasing activity /exertion with activity and CBT rehabilitation .

In patients who are in a hypometabolic state ,metabolic trap with impaired energy metabolism at a cellular level #MECFS
@postersandme @keithgeraghty @4Workwell No mention of melatonin for sleep abnormalities this time . In the NICE #MECFS guide update/replacement

The previous guideline recommended it for sleep for children only #kidswithME
@postersandme @keithgeraghty @4Workwell Training developed and provided by the “specialist” behavioural service providers with an emphasis on their experience and knowledge.

With continual development being relevant to roles
@postersandme @keithgeraghty @4Workwell Training will focus on delivering the “care” in this NICE guideline update

More access to “specialist behavioural rehab services” & reviews [IAPT expansion ]

& identifying #MECFS

& for achieving better outcomes

“should lead to less deteriorating symptoms &cost effective”
@postersandme @keithgeraghty @4Workwell “ less people with deteriorating symptoms “ Another claim 2 recovery but providing opposite

IAPT expansion to longterm conditions & medically unexplained symptoms cost effectiveness & misleading claims of recovery, training high intensity therapists based on #PaceTrial
@postersandme @keithgeraghty @4Workwell Previous NICE 2007 guideline for #MECFS had no evidence 4 sleep management . This update has no evidence either . Structured rest in this guideline!

Services reduced & restricted sleep, based on opinion .

“experienced” committee recommending research on sleep management
@postersandme @keithgeraghty @4Workwell Multidisciplinary team no evidence

“NICE” committee claim fast access 2 will achieve better symptom management ,substantial better outcomes ,& might reduce health & care costs in longer term

[Usually clinician & other roles with specialist interest in MUS & behaviour rehab]
@postersandme @keithgeraghty @4Workwell They claiming a management plan can prevent deterioration & improve longterm outcomes & reduce health costs , whist providing more of the same contraindicated combined approach to increase activity and reduce rest and sleep

That’s a new reframing on cure& treatment I suppose
@postersandme @keithgeraghty @4Workwell They reframed #severeME as a progression & that it can be PREVENTED with a “management plan” that actually added in more of the SAME harm

Just like behavioural approach frames #MECFS as being developed not aquired

They claiming better longterm outcomes & prevention now !
@postersandme @keithgeraghty @4Workwell The NICE committee are claiming “specialist” services with their management plans can prevent #severeME
“Specialist team for a personalised care plan that has aim of minimising the number of people who may progress to severe MECFS”
@postersandme @keithgeraghty @4Workwell Early identification & diagnosis 2 early intervention & management plan claiming prevention of #severeME

With #severeME framed as deterioration from not properly managing symptoms /activity with management plan

IAPT expansion increasing intensity of stepped care& inpatient

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More from @consent_patient

Oct 2, 2021
@me_awareness @postersandme @AliceOutThere @TimC_syd @AtypicalPolioME @hellogeniegroup @tweetingmole BPS model places increased accountability on patients 4 their rehab & return 2 work . Including that sick role is temporary & that cognitions ,behaviours & social factors interact with physiology & perpetuate disability & reliance on benefits & can B managed 2 restore function
@me_awareness @postersandme @AliceOutThere @TimC_syd @AtypicalPolioME @hellogeniegroup @tweetingmole That patients/ disabled are to cooperate with rehab and psych social factors are obstacles to expected recovery . This is why if don’t recover 6 months or obstacle to approach referred social services , deteriorate more intensive behavioural rehab IAPT & inpatient units .
@me_awareness @postersandme @AliceOutThere @TimC_syd @AtypicalPolioME @hellogeniegroup @tweetingmole MUS pathway refer 2 secondary psych if patient can’t come 2 compromise with GP over BPS explanation 4 their symptoms.Back 2 GP when agree 2 deal with symptoms Mental capacity questioned if don’t cooperate.GP can diagnosis MUS any area they feel it affecting management
Read 12 tweets
Aug 30, 2021
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
Aug 29, 2021
@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
Aug 28, 2021
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
Aug 28, 2021
@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
Jul 24, 2021
@sepidgar2 Philanthropic endeavours - a great disguise for terrible crimes

As is the #CrimesAgainstHumanity currently committed under the disguise of “sustainability “
1/2
@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

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