Trial By Error: Sometimes Good Things Happen Quickly, Even When It Involves the UK National Health Service

By David Tuller, DrPH

The new ME/CFS guidelines from the UK’s National Institute of Health and Care Excellence, published last October, reversed the agency’s previous recommendations for graded exercise therapy and (curative) cognitive behavior therapy. While this change presented a welcome repudiation of the research and claims emanating from the GET/CBT ideological brigades, many regional National Health Service trusts have not necessarily gotten the message.

Last fall, I noted a couple of examples of local health authorities continuing to push these discredited and potentially harmful approaches. In some cases, this lack of response to the new NICE guidelines was likely an oversight; in others, it seemed to represent active resistance by die-hard GET/CBT proselytizers and campaigners.

I have always assumed that some or many attendees of these clinics received ME or CFS diagnoses based on vague criteria focused on prolonged fatigue rather than more stringent case definitions requiring post-exertional malaise and other symptoms. If so, it is possible or likely that these clinic patients were suffering from fatigue secondary to depression, anxiety and related mood states rather than the clinical entity now generally being called ME/CFS. For these patients, CBT and GET could be effective approaches—in which case it would be understandable that clinicians might misinterpret them as effective for ME/CFS.

In any event, sometimes good things happen quickly. Last week, Charles Shepherd, medical advisor to the ME Association, wrote to the East Kent Hospitals University NHS Foundation Trust about unacceptable advice regarding ME/CFS in children. The ME Association letter drew an immediate and positive response from the trust, which took down the leaflet and sought to address any negative impacts that might have occurred. “This was a very rapid, genuine and fulsome apology,” said Shepherd.

However, this effort to address inappropriate advice in conflict with the new NICE guidelines apparently needs to proceed on a trust-by-trust basis. After the surprisingly swift resolution of the East Kent situation, Shepherd sent out a similar letter about unacceptable and outdated guidance for children, this one to the Norfolk and Norwich University Hospitals NHS Trust.

Below I have posted Shepherd’s letter to East Kent, followed by the trust’s response.

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ME Association letter to East Kent Hospitals University NHS Foundation Trust

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

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Response to ME Association 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