NICE: Key points on chronic fatigue syndrome management

Diagnosis of CFS is based on a clinical diagnosis. It is characterised by debilitating fatigue not caused by excessive exertion and is not significantly relieved by rest. The symptoms get worse after activity, sleep is unrefreshing and their are cognitive problems.

It should be suspected if this pattern of symptoms goes on for over 4 weeks in children and 6 weeks in adults, were there is significantly reduced ability to engage in usual activities and the symptoms are new and have a specific onset.

There may also be associated symptoms such as pain, hypersensitivity to light, noise, touch, movement, temperature and smells, extreme weakness, difficulties in speaking and swallowing, sleep disturbance, gastrointestinal symptoms, and fainting when standing up or reduced blood pressure on standing.

The doctor is advised to take a full history of what makes symptoms better or worse, sleep quality, physical functioning and current and past use of medicines, vitamins and mineral supplements.

Doctors are advised NOT to offer medicines or supplements to cure or treat CFS but to develop a management plan with the patient that addresses information and support needs, support for the activities of daily living, education, training and employment support, self management, physical maintenance, symptom management, managing flares and relapse and ways to contact their clinical team.

My comment: this sounds much more in the realm of the Occupational Therapist than the GP!

The doctor assesses for and advises on the prevention of long term immobility. Unrestricted exercise is NOT advised. The patient is advised to take part in a supervised programme. My comment: The is what Physiotherapists do.

The doctor is advised to monitor for malnutrition, especially in severe cases. My comment: This is what dieticians do.

Doctors are further more advised to conduct a safeguarding assessment, help patients understand their energy envelope, help patients understand that they are approaching their limit, use a flexible tailored approach that allows for the need to pull back when symptoms worsen. Physio and OT again.

The doctor is meant to help the patient establish an individual activity pattern for example: reduce activity as a first step, plan periods of rest and activity, incorporate pre-emptive rest, alternate different types of activity, and break activities into small chunks. OT

Doctors are meant to emphasise adequate fluid intake and a balanced diet. Minimise nutritional complications of nausea, swallowing problems and difficulties in buying and preparing food. Dietician and Speech and Language Therapists.

They should refer to a dietician if weight plateaus in children or is lost in adults. It is recognised that patients with ME /CFS may be at risk of vitamin D deficiency, but otherwise there is insufficient evidence for routine vitamin and mineral supplementation. Vitamin D is available online for about £10 per year per patient.

To aid rest and sleep relaxation techniques may be helpful. Physiotherapy, OT, Mental health Mindfulness Apps.

If there is orthostatic intolerance the patient should be referred to secondary care and the GP should avoid prescribing unless advised by an expert in this.

For nausea, small and regular feeding and adequate fluids are advised.

For psychological support, Cognitive behavioural therapy may improve well being, quality of life, functioning and psychological stress. Explain that offering CBT does not indicated that beliefs or behaviours are the underlying cause. Mental health nurses. Psychology

Patients with CFS may be more intolerant to medication and may have more severe adverse effects so GPs should consider starting at a lower dose, have a more gradual increase in doses. Drug treatment for children should only be given under the care of a paediatrician.

Patients should respond to flares promptly by identifying possible triggers, temporarily reducing activity and monitoring their symptoms as some flares develop into a relapse.

For a relapse, the doctor or clinician or Physio or OT needs to review the management plan, reduce or stop some activities, increase rest periods and re-establish a new energy envelope.

My comment: There has been a huge increase in CFS due to Covid. With primary and secondary care services at well past broken point, it seems madness for a GP to attempt to follow this NICE guideline. There wasn’t the resources to do so before Covid and there are far less now with a much increased patient group. The most useful thing about this guideline is that it emphasises that there is no magic bullet for this condition. Medications don’t work. It looks to me like the establishment of online zoom classes for patients led by Occupational Therapists would be the most useful way to implement this. Patients could be diverted away from their GPs and referred to the appropriate other health care professionals such as physios, dieticians, social and mental health workers.