NICE Statement about graded exercise therapy in the context of COVID-19

https://twitter.com/user/status/1309429134590869504


Direct link, https://www.meresearch.org.uk/forward-me-group-graded-exercise-therapy-for-me-cfs-and-covid-19/

 

Oof. Terrible response. That's what happens when feedback mechanisms are broken on purpose to maintain a delusional fantasy. They respond to things happening saying that they are not happening. Like talking to a wall.

Either they are not aware that GPs routinely advise this for post-Covid, or don't care. But they are. That's a fact. Whether they intend their guidelines to be used this way or not is irrelevant, they are because they are written in the most possibly vague way, a concern that was raised constantly since. The criteria used are so vague they could apply to half the population because everything is open to interpretation and there is no oversight whatsoever. Basically washing their hands of how their guidelines are used. This organization is completely broken.

 

...or it's operating exactly the way it was designed and intended to.

For some reason people seem to think that NICE was set up, and is operated, for the benefit of patients.

The evidence would suggest that this is not, and never has been, the case.

 

Non-committal statements have consequences. Then again, maybe that was the plan, pretend and just do it anyway.

https://twitter.com/user/status/1334231855437148160

 

Sadly pediatrics is particularly awful

 

the tweet from the RCPH is no longer available. I hope someone, somewhere took a screen shot, as it would be good to collect these statements from large healthcare orgs. to demonstrate to NICE just how much things need to change.

 

Oh Yes I did!

I have no idea why emojis appear as they should not!

 

Posted elsewhere mods so feel free to move consolidate!
Mod note: Go here to discuss this Suffolk guideline
https://www.s4me.info/threads/me-cfs-services-in-the-uk.5625/page-10#post-307648


Joint Trust Guideline for the Management and onward referral of: CFS/ME (ChronicFatigue Syndrome / Myalgic Encephalopathy) in Children and Young People
A Clinical Guideline For Use in: All out-patient and in-patient paediatric settings
By: All paediatric medical and nursing staff. Allied health professionals particularly children’s occupational therapists and physiotherapists
For: Children and young people with CFS/MEDivision responsible for documentaediatricsKey words: CFS/ME Children
Name of document authorr Aravind Shastri
Job title of document author:Service Director
Name of document author’s Line Managerr Mary-Anne Morris
Job title of author’s Line Manager:Chief of service, Paediatrics
Supported byr Stephen Nirmal Consultant PaediatricianJPUH
Assessed and approved by the:Clinical Guidelines Assessment Panel (CGAP) in conjunction with JPUH.
Chairs action Date of approval:08/05/2019
Ratified by or reported as approved to (if applicable):Clinical Safety and Effectiveness Sub-Board

To be reviewed before:This document remains current after this date but will be under review 08/05/2022
To be reviewed byr Aravind ShastriReference and / or Trust Docs ID No:JCG0051 id 1283

Version No:3Description of changes: Reviewed and referral information updated
Compliance links: (is there any NICE related to guidance)Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy), NICE clinical guideline 53,
If Yes - does the strategy/policy deviate from the recommendations of NICE? If so why?No deviation
This guideline has been approved by the Trust's Clinical Guidelines Assessment Panel as an aid to the diagnosis and management of relevant patients and clinical circumstances. Not every patient or situation fits neatly into a standard guideline scenario and the guideline must be interpreted and applied in practice in the light of prevailing clinical circumstances, the diagnostic and treatment options available and the professional judgement, knowledge and expertise of relevant clinicians. It is advised that the rationale for any departure from relevant guidance should be documented in the patient's case notes.The Trust's guidelines are made publicly available as part of the collective endeavour to continuously improve the quality of healthcare through sharing medical experience and knowledge. The Trust accepts no responsibility for any misunderstanding or misapplication of this document.

 

There is really not much good in this, and in conjunction with the usual fixation ( sleep hygiene and limiting rest periods ) , there is only GET as CBT is " currently unavailable "
FII marked for pitential investigation from early on .....

Looks very like the recent RCGP guideline highlighted elsewhere.

 

Which was miraculously withdrawn this week.......

 

https://elearning.rcgp.org.uk/course/search.php?search=elearning

Chronic Fatigue Syndrome Myalgic Encephalomyelitis






This online course provides GPs and other primary care practitioners with an overview of the presentation, diagnosis, assessment and ongoing management of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

It highlights common misconceptions about CFS/ME and considers the challenges that surround this complex condition for patients, carers and primary care professionals.

This course is produced as part of the METRIC study, funded by the National Institute for Health Research (NIHR) Research for Patient Benefit programme, which aims to improve the care of adults with CFS/ME by developing information and resources for patients and education for primary care professionals.

This course is FREE to RCGP members and available for purchase by other healthcare professionals.

The course is currently offline while being reviewed to be in accordance with new NICE guidelines.



Start Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Time to complete this course: 1.5 hours
Date of publication: May 2012
Reviewed: April 2018
to be reviewed upon new NICE guidance

Category: Clinical Courses and Certifications

 

Posted right next to "exploitation of children". Well, ain't that on the nose.

 

Another brick falling. I slammed this program last year and wrote to Carolyn Chew-Graham about it, since she was the lead author of it. She has seemingly backtracked, given her comments in the Royal Society of Medicine meaning. Since the new draft won't be out until April, this sounds like they assume the changes in the draft will be permanent. Hm.

 

It's almost comical to consider the timeline of them posting this as something to be proud of, only to have to literally take it offline 2 days later. Especially after so much resistance over the years. Because something must have spurred the idea that it would be good to promote this polished turd, someone had to have the idea without knowing any of the details involved and likely really thought they were helping.

Wait, not almost. It would be hilarious if it wasn't for the real-life consequences that were forced onto vulnerable children, but it's still pretty comical, in a twisted humor kind of way.

Must be puzzling for those who bought the crap about a small militant group (was it the same group for the entire decades-long span?!) now seeing the exact same comments from not only long haulers but medical professionals with LC. But then again this is a group of people who routinely hold mutually contradictory beliefs in their heads and see no problems so what's another cognitive dissonance on top of all the rest?

 

Actually, we crossed paths here. I was referring to the RCGP long-standing METRIC program, which has now been taken down. You're talking about the pediatrics site that was promoted and taken down in two days. it's not clear to me if that pediatrics thing was something new, or was that something that was up there that they suddenly decided to promote?

 

Oh crap I definitely mixed them up. Still, good news.

 

I have a screenshot!

 

RCPCH elearning was from 2015, reviewed in 2018 and due for further review in 2021. Grrrhhh