Severe ME in Children by Dr Nigel Speight

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Dr Nigel Speight, Hon. Paediatric Adviser to the ME Association, published a paper in July 2020 that discusses how severe M.E. can present in children and young people. He talks about the approach that should be adopted by doctors, and what can be done to help provide appropriate support and care.

Description

Dr Nigel Speight, Hon. Paediatric Adviser to the ME Association, published a paper in July 2020 that discusses how severe M.E. can present in children and young people. He talks about the approach that should be adopted by doctors, and what can be done to help provide appropriate support and care.

Several case studies are offered that provide cautionary tales of what not to do as well as recommendations as to how care for this vulnerable patient group should be improved. This paper could be helpful for parents, carers, and doctors as background reading and before care management plans and home visits are initiated.

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 recognise 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.”

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