‘There’s no smoke without fire’ by Dr Elizabeth Dowsett | message from Young ME Sufferers Trust | 21 October 2012

To commemorate my colleague Dr Elizabeth Dowsett, The Young ME Sufferers Trust has published online her ‘Comments on the tendency to relapse in ME’ and how to handle it. This publication was written especially for Tymes Magazine, Winter 2000, and is as relevant today as it was then.

If you receive our postal mailings, or if you follow me on Twitter, you’ll know about this already. You’ll find it here: www.tymestrust.org/pdfs/nosmoke.pdf

Betty writes:

“ME commonly follows a virus infection which can, at first, appear to be
trivial.

“However, the illness soon becomes distinguishable from other forms of post viral debility (including that associated with influenza) because of its prolonged course and tendency to relapse, making it inadvisable for sufferers to return to school, college or work without adequate convalescence.”

What a key statement that is, and yet how difficult it seems to be for many professionals to accept that it isn’t better till it’s better! There is no way you can force a young person with ME into health quicker than their body is able to heal. It’s hard enough for the child to accept it themselves, but if teachers and doctors collude to push them into doing too much, they typically end up being pushed into relapse. How lucky we are when we meet a professional who understands.

In her short, erudite piece, Betty covers:

What is a relapse?

Are young people more at risk of contracting ME now than in the past?

Why does an illness which can appear trivial at first, take such a long
time to stabilise?

Are there any implications for management?

How can a relapse be distinguished from a minor variation from ‘normal’?

What is the best way to manage a relapse?

She ends with ‘A little allegory’ about electric toasters. That’s our
Betty! A great sense of humour along with great wisdom.

Yet her down to earth approach is deceptive. The well explained
virological information in this short publication is a revelation to any
non expert – and, I suspect, some experts too.

Talking of how the effects of ME can slowly subside, Betty writes: “…we
have diseases caused by a wide variety of virus species which (through
millennia of association with humans) have learnt by various means to
persist inside human cells for long periods without alarming the hosts
immunological surveillance system. Of such are the viruses associated
with ME.

“The main principles of management still rely upon:
Conservation of energy
Reduction of stress
Simplification of work.”

This is not some clever-sounding program that unnecessarily sucks the person into becoming a permanent patient. The bonus is that it works, as I can testify from my own case.

All good wishes,

Jane

Jane Colby FRSA
Executive Director
The Young ME Sufferers Trust
PO Box 4347, Stock, Essex, CM4 9TE
www.tymestrust.org
Tel: 0845 003 9002

Holder of The Queen’s Award for Voluntary Service:
The MBE for Volunteer Groups

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