Excellent paper by Dr Nigel Speight on ME in the Paediatric Population in Healthcare Journal 20th July 2020

[Countrygirl]

This is an excellent paper you can download authored by Dr Nigel Speight in tomorrow's Healthcare Journal. I have sent it now to GP family members and will be printing it off to send to my surgery.

https://www.mdpi.com/2227-9032/8/3/211?fbclid=IwAR1i8edD7yCC6aIlu6IIECxE-hHjHKwA8kWaXKsQdBGi1jxlN65joaVAptg

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 others 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

16.2. Case B
A 16-year-old girl already had Severe ME when a new paediatrician took over her care.
She (the paediatrician) could not believe that anyone could be so light sensitive as to have to lie
in a darkened room and still wear eye shades. She applied to the court to get the girl admitted to her hospital ward for active physiotherapy, and assured the judge that with this treatment she would be back at school full time within 6 months. The judge granted the order and the girl was admitted to hospital. She received active physiotherapy for three months and her condition deteriorated even further. Before every session, she told the physiotherapist that she was in breach of her professional ethical guidelines.
The judge eventually lifted the court order and the girl was allowed home, in a significantly
worse state than when she was admitted. Twenty years later, she remains severely aected, still being bedridden and needing tube feeding.
This case shows a combination of disbelief in the reality of Severe ME combined with a false belief in the efficacy of Graded Exercise Therapy.

 

[Pyrrhus]

This article is part of a special issue of the journal Healthcare, dedicated to the topic of severe ME:

Healthcare Journal dedicates an entire issue to Severe ME
https://forums.phoenixrising.me/thr...dedicates-an-entire-issue-to-severe-me.83585/