Thread by @consent_patient

@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

https://mobile.twitter.com/consent_patient/status/1431684359501848578

@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

https://mobile.twitter.com/RogerBourlet/status/998467996342476800

@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

https://mobile.twitter.com/consent_patient/status/967797885302640640

@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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