Tymes Trust Alert 2013-10
Message from Jane
26 November 2013

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Follow Jane on Twitter @JaneCColby
or read her tweets at www.tymestrust.org

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#AskJCC on YOUNG HEARTS DAY FRIDAY 29 NOVEMBER
And: Don't forget to read Episode 4

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My Twitter followers know that on Friday 29th (from 3pm-5pm) I am holding
another Question & Answer Session: tweets should be addressed to
@JaneCColby and include the hashtag #AskJCC. These occasions are always a
mix of serious and fun, with questions varying from the technical, to
"what is your favourite biscuit?" So if you're on Twitter, don't forget
to join in. The challenge of Twitter (which I have to confess to enjoying
hugely) is to express a message in just 140 characters.

Here I have a bit more room, so I want to address a problem that is
coming up time and again, in emails and in calls to our Advice Line Team.
It is the misconception among medical and educational professionals of
the way in which ME-affected muscles respond to exercise.

I just wrote to a parent facing this problem: "The way I describe
recovering from ME is: 'Don't pick your scabs!'." The body is trying to
heal, and often professionals don't seem to grasp that it's a long
process. Even those who use the unsatisfactory term Chronic Fatigue
Syndrome don't always grasp that Chronic actually means 'long-lasting'.

Until the muscles are recovered enough, the affected muscles do not
respond to exercise in the same way as healthy muscles. You'll find a
brief discussion of this in an advisory letter by me, published in
Physiotherapy Frontline (2001) here:
http://www.tymestrust.org/pdfs/physiosguide.pdf. Recent research has
further confirmed these points.

DON'T FORGET TO READ Episode 4

http://www.methenewplague.net/Readthelatestepisode.html

If you haven't yet read the latest episode of my new book, you'll find
that I address the same problem. But the emphasis here is on describing
what it's really like to struggle with ME and how important your evidence
is. You might find it helpful if family and friends were to read it too.

I point out that when people with ME "clearly describe their illness and
recount their personal experience of what it has done to them, how they
have seen exertion worsen their condition, how their bodies just do not
function, too often they find their real-life evidence relegated to the
lowest category of reliability. The basement dump. This has to change."

There's a form on the website to let me have your comments. I read all of
them in detail.

SELF-ADHESIVE CHRISTMAS STICKERS!

http://www.tymestrust.org/img/tymes-snowman-stickers.jpg
http://www.tymestrust.org/img/tymes-tweet-sticker.jpg

Not too late to order! Do have a look at our Snowman and our Jolly
Robins. Ah go on. They're good fun for dressing up your cards and
envelopes. We still have some Santa stickers too. Just make any donation
and let us know how many you'd like.

With all our thoughts for Young Hearts Day, when we light a candle and
spend some moments thinking about young people with ME everywhere,
especially the severely affected. You may wish to light a candle of your
own. Send me a photo if you do.

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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is retained; and 3) www.tymestrust.org is credited as the source.

Jane Colby is Executive Director of The Young ME Sufferers Trust.
She was a Headteacher for nine years, a member of the government
Chief Medical Officer's Working Group on CFS/ME and co-authored
ME/CFS In UK Schools, the largest epidemiological study of ME to
date. She is a life member of the National Association of Head Teachers
and a Fellow of the Royal Society of Arts.

Copyright (c) 2013 The Young ME Sufferers Trust