MEA writes to Norfolk and Norwich University Hospitals Joint Trust regarding their Guideline for the Management and onward referral of CFS/ME (Chronic Fatigue Syndrome / Myalgic Encephalopathy) in Children and Young People
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Following receipt of the letter sent by the ME Association, Norfolk and Norwich University Hospitals Trust have withdrawn the dated information about graded exercise therapy from the guideline for children and young people, and will be adapting services to comply with the 2021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.
Yesterday we were rewarded with an immediate withdrawal of potentially harmful information on the management of children with ME/CFS following our raising concerns with East Kent NHS Hospitals Trust.
Today we are writing to ask for the immediate withdrawal of guidance from the Norfolk and Norwich University Hospitals Trust. This guidance was updated in June 2022 but still recommends the use of GET and the remaining guidance is based on the previous NICE guideline which is no longer fit for purpose. The advice on the site can be seen here.
Dear Chief Executive Sam Higginson
Norfolk and Norwich University Hospitals:
Joint Trust Guideline for the Management and onward referral of CFS/ME (Chronic Fatigue Syndrome / Myalgic Encephalopathy) in Children and Young People
Assessed and approved by the Clinical Guidelines Assessment Panel on 3 June 2022
I was shocked and very disappointed to read that your NHS Trust is still recommending the use of graded exercise therapy (GET) for the management of children and young people with ME/CFS when this treatment is NOT recommended in the (October 2021) NICE guideline on ME/CFS.
The positive recommendation on graded exercise therapy is on page 10 of the Joint Trust Guideline:
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 andphysiotherapy teams.
GET should be based on the child’s current level of activity. That baseline should beeasily achievable. An activity diary will help to establish the baseline (Appendix B). It isimportant 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
The committee that prepared the 2021 NICE guideline on ME/CFS concluded that the research evidence on the efficacy for GET from clinical trials was either low or very low in quality.
They also concluded that there was substantial and consistent patient evidence over many years relating to significant harm from this treatment in both adults and children with ME/CFS.
Consequently, the 2021 NICE guideline on ME/CFS states that GET should no longer be recommended as a treatment for ME/CFS.
2021 NICE Guideline section 1.11.14
1.11.14 Do not offer people with ME/CFS:
- any therapy based on physical activity or exercise as a cure for ME/CFS
- generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
- any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)
- physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.
The Joint Trust document should therefore be withdrawn with immediate effect.
This should be recorded as an adverse incident on Datix – the clinical incident management system – as it represents a serious failure in the duty of care to children and adolescents with ME/CFS.
As well as removing the document from your website, other immediate actions should include:
- Identifying if this document was given out to any known patients – if so the families should be contacted as a matter of urgency and informed of the error regarding GET, a harm review carried out, and clinical information updated for the patient.
- Taking the above action for any child or young person where clinical advice has been based on any of the potentially harmful advice on GET within the document.
This document then needs to be completely rewritten to make sure that all the recommendations and guidance are consistent with the new NICE guideline and that all the sources of further information and support are correct (which is not the case at present)
Dr Charles ShepherdHon Medical Adviser, ME AssociationMember NICE guideline on ME/CFS committee from 2019 – 2022
Dr Nina Muirhead – Co-Chair, DHSC Group on ME/CFS Medical Education and Training
Carol Monaghan MP – Chair, APPG on ME
Baroness Ilora Finlay – Co-Chair NICE guideline committee on ME/CFS
Anna Gregorowski – BACME