Report cruel comments by medical professionals to ME children

[Countrygirl]

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

Message from Jane
29 February 2012

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CRUEL COMMENTS SHOULD BE REPORTED

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Over the last week I have shared with my followers on Twitter some of
the things that have been said to children with ME and their families. I
have of course anonymised them. Judging by the reaction, and all the
retweeting that has been going on, people are amazed that these
statements could have been made by professionals. Unfortunately, such
occurrences don't seem to be as rare as we'd like to think.

I have now decided to collect further examples. This is because, when I
was planning to include an example in a presentation to the All Party
Parliamentary Group on ME, I was asked by another ME organisation to
avoid giving the impression that this was a common event. Well, having
reviewed some of our Advice Line Records, I'm not convinced that it is
all that uncommon.

My brief review revealed the following:

A professional arrived at a mother's home and told that her child
with ME would be taken into foster care and that she herself would be
put in prison with murderers and rapists if she didn't send her child to
school.

A doctor told a school that winter typically makes people with ME
worse, but the reaction from a member of school staff was to say that
the family should just get a light box.

The 'sleep police' are ordering children with ME not to take naps if
they feel they need them. Some of these professionals are well-known in
the ME field and should surely know better. The late Dr Alan Franklin
described forcing sick children awake inappropriately as 'cruel' as well
as unproductive.

And then we come to the extreme comment that I included in my APPG
presentation: a child needing a wheelchair was told by a doctor that her
legs might have to be cut off. This was not only a breathtaking lie but
it must have terrified the child. I would class this comment, and others
like them, as a form of abuse.

Of course, such comments also reveal a serious lack of knowledge about
ME. For example - as ME expert Dr Elizabeth Dowsett always explained -
having the option of a wheelchair can not only help a child get out and
about, but also rest the leg muscles so they have an opportunity to
heal. I remember a young girl who found the muscles in her arm stopped
working. All she had been doing was over-using her arm muscles by typing
on the computer too long. When she rested them, her arm function returned.

Dr Dowsett often used to point out that the muscles of someone with ME
do not function like muscles that are fit and well and they need time to
heal. Information on this is in 'Physios urged to go cautiously', a
letter of mine that was published in Physiotherapy Frontline. You can
read it here:
http://www.tymestrust.org/pdfs/physiosguide.pdf

I would advise parents to report professionals who make such remarks as
those I have listed. Whether they spring from frustration at not being
able to cure the child, or from annoyance that the child seems to them
uncooperative, these remarks are inexcusable.

Do send me any comments which you wish to bring to my attention. It is
important that we are armed with the facts. We cannot just turn away in
embarrassment at the behaviour of the professions with whom we are
trying to work, and pretend that this is not happening.

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
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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) 2012 The Young ME Sufferers Trus

 

[SilverbladeTE]

Wasn't young, but as said, before
"Reduce your calorie intake: there were no fat folk in Belsen!"
was pretty jaw dropping to hear from a GP. Meh!

Not only was it grotesquely asinine, but he was wrong, and the "fat" person was a female doctor the SS left unharmed and fed to deal with the inmates (special kind of hell that must have been for her, poor sod).
Great Uncle Will was one of the nicest, funniest, cheeriest souls I have ever know
But what he saw at Belsen used to make him go on "benders" etc at times as he couldn't take it, no damn wonder.

IMHO, there's some serious gawd damn mental problems with many doctors :/

 

[Dainty]

And then we come to the extreme comment that I included in my APPG
presentation: a child needing a wheelchair was told by a doctor that her
legs might have to be cut off. This was not only a breathtaking lie but
it must have terrified the child. I would class this comment, and others
like them, as a form of abuse.

That's horrible.

It appears similar to one of my experiences. I was 17 at the time, and after 3 days in a row of being continually doubled over due to abdominal pain that became unbearable whenever I straightened I went in to see a doctor about it. When a brief examination revealed no obvious issue, the doctor said there was no problem and then informed me that if this continues they might end up removing a portion of my intestines. He told the story about a person with IBS who had a section of her bowels removed and how "she claimed" it helped, even though, he said, there was no medical reason that it would.

It was obvious to me that he had decided I was faking something and he apparently figured that threatening me with major surgery would snap me out of it.

 

[Enid]

For children unforgiveable - for me "just in your mind" - pathetic - for my local Docs - I don't think you have a psychiatric problem - well how nice to hear when passing out.