United Kingdom: Norfolk and Norwich University hospitals (NHS)

[Sly Saint]

Chronic Fatigue Syndrome in Children JCG0051 v3.1

Joint Trust Guideline for: the Management of: CFS/ME in Children and Young People
Author/s: Dr Aravind Shastri Author/s title: Service Director
Approved by: CGAP Date approved: 03/06/2022

Overview
The objective of this guideline is to provide professionals with an evidence based approach for the diagnosis and management of CFS/ME in children. In particular it emphasises the importance of making an accurate diagnosis ensuring that all the clinical features are investigated and the value of working in partnership with children and their families.

the following is hardly visible on the web page due to it being over a 'busy' picture

Clinical Guidelines
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.

pdf downloadable
https://www.nnuh.nhs.uk/publication/chronic-fatigue-syndrome-in-children-jcg0051-v3-1/

it appears to have been done in a hurry (?) comes up as 'Template for clinical guidelines' and many pages have no content.

although it says at the outset there is no deviation from the national guidelines it says

Rationale for the recommendations
This guideline was written to reflect and incorporate recent national guidance on the
management of CFS/ME in children. The local services for children with CFS/ME are
fragmented and not comprehensive. This guideline will serve as a standard by which these
services should be reviewed and revised.

The evidence base, in particular that reflected in the NICE guidance(1) Children’s NSF
Exemplar (2) and RCPCH guidance (3) are in concordance with one another and provided a
sound framework for the local development of this guideline.

Other than Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) there is little evidence for the other management strategies. However the guidance in this document accurately reflects national guidance and the principles of sound paediatric
practice.

then this

Cognitive Behaviour Therapy (CBT)
There is evidence that CBT improves the outcome for children and young people with
CFS/ME. (1)
CBT should only be delivered by a healthcare professional with appropriate training.
CBT helps children to understand and break down their problems into manageable and
smaller parts. It is a process that identifies the situation or problem and links that with the
child’s thoughts, physical feelings, emotions and subsequent actions i.e. what they think
about their fatigue affects how they feel about their fatigue and consequently what they do
about it.
CBT should be delivered by a professional with appropriate training. CBT is currently
unavailable locally for children and young people with CFS/ME.
Graded Exercise Treatment (GET)
GET is best delivered by a suitably trained occupational therapist or physiotherapist.
Locally GET is offered on a limited basis by the children’s occupational therapy and
physiotherapy teams.
GET should be based on the child’s current level of activity. That baseline should be
easily achievable. An activity diary will help to establish the baseline (Appendix B). It is
important to ensure the child is not in a boom/bust cycle before increasing exercise.
Increases in exercise should be manageable, by 10% at most.
GET should be based on the person’s current level of activity. When planning GET
professionals should:
 Identify the long term activity goals
 Ensure the increases in activity are gradual
 Recognise that progress may be slow
When starting GET professionals should
 Agree with the child sustainable increases in activity
 Advise that the symptoms may deteriorate initially

have they read the new guideline?

 

[It's M.E. Linda]

…..have they read the new guideline?

Have you been able to send this good spot to the ME Association @Sly Saint ? They have done a very swift response to the East Kent Hospitals physio’s “advice”

Please shout if you are unable to do this, I am happy to use your post above (if that is ok with you) to email people at MEA, if you need any help.

 

[Jonathan Edwards]

This is IiME territory - they might have local contacts.

 

[rvallee]

Joint Trust Guideline for: the Management of: CFS/ME in Children and Young People
Author/s: Dr Aravind Shastri Author/s title: Service Director
Approved by: CGAP Date approved: 03/06/2022


the following is hardly visible on the web page due to it being over a 'busy' picture



pdf downloadable
https://www.nnuh.nhs.uk/publication/chronic-fatigue-syndrome-in-children-jcg0051-v3-1/

it appears to have been done in a hurry (?) comes up as 'Template for clinical guidelines' and many pages have no content.

although it says at the outset there is no deviation from the national guidelines it says


then this


have they read the new guideline?

For sure they heard the medical associations saying they would respect the guideline over their dead institutions. They are clearly complying with their hierarchy here, following instructions, executing the scripts they were given.

What with seeing the number of physicians in countries where they are explicitly forbidden to speak of Covid under any circumstances, to the point of pretending to be puzzled over a wave of chronic coughing or "surprise" allergies, I think it needs to be recognized that for all the pretense, healthcare first and foremost is about compliance, which explicitly overrules any and all so-called principles, duty or "oath".

I never imagined physicians could engage in mass lying of this scale, but here we are. They even pretend to play along, because otherwise they lose their jobs, or at least risk losing status and derail their career. They follow the law and hierarchy. This is what affects them in their day-to-day job, their immediate work environment. The rest is other people's responsibility.

 

[Sly Saint]

Have you been able to send this good spot to the ME Association @Sly Saint ? They have done a very swift response to the East Kent Hospitals physio’s “advice”

Please shout if you are unable to do this, I am happy to use your post above (if that is ok with you) to email people at MEA, if you need any help.

I'm just posting them here as I find them. There are others on the UK ME/CFS services thread.

(Ideally we would just have to tag an MEA representative ie I know @Russell Fleming is part of MEA but he hasn't been here since the end of last year?).

eta:

East Kent Hospitals physio’s “advice”

https://www.s4me.info/threads/united-kingdom-nhs-east-kent-hospitals-university-me-cfs.28304/

 

[Suffolkres]

This is IiME territory - they might have local contacts.

Name and Position
Dr Aravind Shastri
Consultants
Paediatrics
Contact Details
Main Telephone Number:01603 287534
Profile
Department page: Paediatrics

Sub-Speciality: Paediatric Cardiology, Paediatric rheumatology (secondary lead), Acute Paediatrics

Position: Consultant Paediatrician and clinical lead for Paediatrics at NNUH

Secretary: Nicola Thorne Nicola.thorne@nnuh.nhs.uk

Special Clinical Interests:

1. Congenital heart disease, Paediatric arrhythmias, Screening for inherited cardiac conditions like Cardiomyopathies, Channelopathies ( Long QT syndrome)
2. Educational – Undergraduate and Postgraduate education in Paeditrics

Secondary care lead for Paediatrics

Research Interests: as above

Current Membership of Professional, National and Regional Bodies: Member of Royal college of paediatrics and Child health ( RCPCH), Member of General medical council ( GMC), Member of Association of European paediatric cardiology ( AEPC)

Universities and Degrees: MBBS, MD ( paeds), MRCPCH, CCT in Paediatrics, Fellowships in paediatric cardiology at Royal Brompton and Great Ormond Street hospitals

GMC Number: 6070868

Personal Profile: Other interests include – Music, Dance, Sports – Cricket, table tennis, Badminton, running marathons, organising charitable events

 

[It's M.E. Linda]

I'm just posting them here as I find them. There are others on the UK ME/CFS services thread.

(Ideally we would just have to tag an MEA representative ie I know @Russell Fleming is part of MEA but he hasn't been here since the end of last year?).

Many thanks for clarifying @Sly Saint

I have emailed Russell all the details in post #1, just in case he has not been able to follow threads on the forum.

 

[Wyva]

 

[John Mac]

Norfolk & Norwich University Hospital Trust withdraw GET and comply with the 2021 NICE Guideline!

UPDATE 13 July 2022
Following receipt of the letter sent by the ME Association, Norfolk and Norwich University Hospitals Trust have withdrawn the dated information about graded exercise therapy from the guideline for children and young people, and will be adapting services to comply with the 2021 NICE Clinical Guideline recommendations.

https://meassociation.org.uk/2022/0...et-for-children-and-young-people-with-me-cfs/