The ME Association has written to express a number of concerns about the information the East Kent Hospitals University NHS Foundation Trust are providing to children and parents on the role of physiotherapy in ME/CFS. This resulted in a swift and very positive reply from the Foundation Trust with details of how they were removing the leaflet and contacting people who may have received it.
The letter
Dear East Kent Hospitals University NHS Foundation Trust
Re: CFS/ME and Physiotherapy
I was surprised and very disappointed to read some of the badly worded guidance on activity and energy management in your new (March 2022) patient leaflet for children with ME/CFS. In particular:
- Routine is the key to success
- For example between sessions you may be set tasks or ‘homework’ in the form of goals. These will be agreed between you and your physiotherapist. Carrying out these tasks is an important part of your treatment and good progress will not be made without it.
- Feeling strange or having different symptoms is normal when you start a new activity or exercise. Your skin may go red, you may feel tired, your body and muscles may feel like jelly or stiff when you finish. This is quite normal.
- What do I do if I have a set back? Do not stop completely, continue your exercise programme
- Aerobic exercise is an activity that increases your heart rate and makes you feel breathless. This is a good thing!
- Research has shown that a gradual increase in this type of activity can help people recover from CFS.
- Aerobic exercise includes swimming, cycling, fast walking, or jogging as well as some light competitive sports.
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This sort of guidance is not consistent with the very comprehensive recommendations on activity and energy management in section 1.11 of the new (October 2021) NICE guideline on ME/CFS, and relapse management in section 1.14.
Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE
People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about your care.. Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines …www.nice.org.uk
Inferring that increasing aerobic activity can be safely carried out until a child with ME/CFS becomes breathless is also potentially dangerous, especially when postural orthostatic tachycardia syndrome (PoTS) is a quite common co-morbidity in this age group. The new NICE guideline on ME/CFS makes it clear that inappropriate activity can easily cause a significant exacerbation or relapse of symptoms.
This leaflet should be withdrawn and rewritten in a way that reflects the very carefully considered recommendations on the role of both rest and activity and energy management (including exercise where appropriate) in the new NICE guideline – which emphasises the need to consider stage and severity of ME/CFS, the presence of co-morbid conditions such as PoTS (which is not even referred to in the leaflet), and the need to avoid post-exertional symptom exacerbation (the cardinal diagnostic feature of ME/CFS) when planning an individual management programme.
It is also disappointing to find that the leaflet fails to provides any reference or link to the information on ME/CFS in children and young people, and activity management, in the new NICE guideline on ME/CFS.
I would also point out that the new NICE guideline refers to ME/CFS and not CFS/ME.
Yours sincerely
Dr Charles Shepherd. Hon Medical Adviser, ME AssociationMember of the NICE guideline on ME/CFS committee from 2019 – 2021
Copy:
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
The reply from EAST KENT HOSPITALS UNIVERSITY NHS FOUNDATION TRUST)
Thank you very much for alerting us to this error. You are quite right to have raised your concerns. The leaflet has been immediately taken off the website and the incident is being raised on Datix (our clinical incident management system) and investigated.
As well as taking the leaflet off the website the immediate actions will be to:
- Identify if this leaflet was given out to any of our known patients – if so the families will be contacted as a matter of urgency and informed of the error, a harm review carried out and clinical information updated for the patient.
- The above action will also be taken for any child or young person where clinical advice has been based on any of the harmful advice within the leaflet.
Unfortunately, we are unable to identify if anyone has accessed the leaflet independently of a clinician signposting them.
The above has started and all staff who are in work will be spoken to by end of today – 2 of our 3 localities have already been approached and staff have confirmed the leaflet has not been used and were not aware that the leaflet was in circulation. All staff so far have confirmed they are working to the current guidelines which reflect the current NICE guidelines.
Once again thank you for raising this issue and our sincere apologies that this incident has occurred.
Karen Costelloe
Operations Director
Child Health Care Group