Severe ME in children, by Nigel Speight in Healthcare Vol 8, #3 p 211, July 14, 2020 [This article belongs to the Special Issue ME/CFS]

Guideline abstract

The current problem regarding Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is the large proportion of doctors that are either not trained or refuse to recognize ME/CFS as a genuine clinical entity, and as a result do not diagnose it. An additional problem is that most of the clinical and research studies currently available on ME are focused on patients who are ambulant and able to attend clinics and there is very limited data on patients who are very severe (housebound or bedbound), despite the fact that they constitute an estimated 25% of all ME/CFS cases.

This author has personal experience of managing and advising on numerous cases of severe paediatric ME, and offers a series of case reports of individual cases as a means of illustrating various points regarding clinical presentation, together with general principles of appropriate management.

4. Possible Clinical Features of Severe and Very Severe ME/CFS

• Minimal energy levels, resulting in the patient being housebound or bedridden;
• Paralysis;
• Severe generalised continuous pain;
• Severe continuous headache;
• Hyperaesthesia/extreme sensitivity to touch;
• Abdominal pain, worse after food—this may be so severe as to interfere with nutrition;
• Sleep disturbance, possible hypersomnolence or difficulty sleeping on account of pain and headache;
• Major problems with cognition, concentration and short-term memory;
• Extreme sensitivity to light and sound;
• Multiple chemical sensitivities;
• Problems with eating and drinking—this can be due to either general weakness or actual dysphagia, and this may necessitate tube feeding;
• Aphonia (mechanism unclear);
• Myoclonic jerks;
• Incontinence.

17. Take Home Messages

• Severe ME constitutes a major challenge for both patient and doctor.
• Mismanagement in the form of “activation regimes” can result in permanent harm or even death of the patient.
• The patient deserves the total commitment of one doctor, who is willing to visit at home on a regular basis.
• Referral to a psychiatrist who does not believe in ME/CFS can be harmful.
• The patient should be protected from sensory overload.
• The doctor should resist the temptation to overinvestigate, or involve too many other professionals.
• Nursing at home is usually far preferable to admission to a busy general hospital.
• Tube feeding is indicated when the patient has problems with eating and drinking.
• Urinary catherization may be helpful in reducing the stress of having to micturate.
• Symptomatic treatment for pain and sleep problems is worthwhile.
• Full recovery is possible.
• The role of immunoglobulin deserves further study [10].
• There is a need to improve both undergraduate and postgraduate medical training in this area, and to provide greater resources for the patient population affected.