Article MDPI: Severe ME in Children - Nigel Speight July 2020

[Sly Saint]

Abstract
A 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. View Full-Text

https://www.mdpi.com/2227-9032/8/3/211

(This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)

 

[Hutan]

If the doctor has never seen a case of Severe ME/CFS before, as is often the case, there is a natural tendency to panic, and to worry that the patient might die, or that the diagnosis was wrong. In addition, the doctor may feel a sense of helplessness, with no obvious therapeutic options available.

These emotions can lead to the doctor adopting a strategy of avoidance, refusing to accept that he/she has a duty of care to the patient, and regrettably many patients with Severe ME/CFS suffer near total neglect by their doctors.

Alternatively, the doctor may try to insist on inappropriate “treatment” strategies, such as CBT or GET. Neither form of treatment has been studied in the severe or very severe population. Further, especially in the severe cases, rigidly enforced GET is nearly always seriously harmful. The current NICE Guidelines (2007) specifically do not recommend GET in Severe ME

 

[Trish]

This looks like a good article for parents with children with severe ME to give to their doctors to read. It's a quick easy read and covers key points vital to good care, with brief case studies showing good and bad treatment and outcomes.

Does anyone know whether immunoglobulin treatment has been researched?