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How ME affects Children and Adolescents

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 Dr Nigel Speight was not speaking from a
prepared script – but he has kindly provided
the following summary of his presentation.
Dr Speight is also Paediatric Medical Adviser to The ME
                      Association.
I started by mentioning my experience of paediatric ME/CFS
over the last 20 years.
Since the death of the late Alan Franklin from Chelmsford, I
am probably currently the paediatrician with the most
experience of this condition in the U.K.
I have an accumulated total of over 200 personal cases in the
North East and have seen around 150 further cases
nationwide, including Scotland, the Isle of Man and Northern
Ireland.
These latter cases were ones where I was called in for a
second opinion by the local paediatrician because of the
severity of the case or, more commonly, where I was asked
for a second opinion by the family and GP because of
difficulties in getting a diagnosis locally.
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What can paediatric ME/CFS teach
us about the basic controversy as to
whether ME is a physical or
psychological condition?

I started by saying that children
sometimes have a knack of going to
the heart of the matter as per the
Bible “Out of the mouths of babes
and sucklings...”
STORY 1:

A 6 year old girl was told by her
Professor of Paediatrics that there was
nothing wrong with her because all her
tests were normal. She responded quite
logically by saying “perhaps I have got a
condition for which you have not yet
invented a test!”
STORY 2:
A 14 year old doctor’s son in Australia
developed ME and over the next year was
taken all over Australia for second opinions.
Someone said to him at the end of this year
that he must have found out a lot from having
seen so many clever doctors. He responded
“not much really, they don’t seem to
understand it, but there is one thing I have
noticed – it is a condition which seems to
provoke an acute emotional disturbance in
doctors confronted with it!”
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Similarly, the experience of severe cases in young
people supports the same thesis.

If ME/CFS was a basically psychological disease
then in the case of a severely affected bed bound
young person there would have to be such
concrete evidence of severe psycho-pathology to
cause such disability that it would be blindingly
obvious. However, such evidence is almost
invariably lacking.
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Regarding the basic controversy of ME being a
physical illness or psychologically caused, I think
the evidence in paediatrics can supplement all the
evidence from adult ME and strengthen it because
the issues in paediatric practice are clearer and
more black and white. When one sees an 8 year
old child who is functioning happily at school and
at home who is then struck down by the condition
in the total absence of any other psychological
problems, it would seem self evident that this is
primarily a physical condition.
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Map of Britain - yellow dots
The yellow dots on the following map
represent cases that had to either travel to
Durham or had to be visited by me for the
purposes of getting a diagnosis of ME in the
absence of one locally, and/or providing
extra support and advice for the local
professionals.
  Map of Britain – red dots
The red dots all represent cases in which Child
Protection Proceedings were commenced and
families were threatened with removal of their
affected child, usually as a result of the local
paediatrician either not believing in ME in the first
place or failing to diagnose it in a particular child
and initiating proceedings on the basis of
Munchausen Syndrome by Proxy. (Since this slide
was made the number of yellow and red dots has
increased by about 30% each).
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Sarah’s case - next two slides
 Sarah’s case demonstrates how even very severe
 cases can make a total recovery and raise the
 question as to whether or not immunoglobulin
 therapy might yet be proved to be effective in this
 condition. I mentioned that had research in this
 area not been dominated by the psychological
 view for the last 30 years, then the question about
 immunoglobulin would have been settled long
 ago.
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 Slide of girl doing aerobics
(consent given for use of this slide).
This girl from Northern Ireland was participating in an
aerobathon while unfortunately incubating a dose of flu.
Three days after this photo was taken she bed ridden with
severe ME and spent the next two years tube fed as an in-
patient in her local paediatric ward.
On her 16th birthday she was discharged from paediatrics
and although she remained an extremely severe case no
adult physician has ever agreed to accept responsibility for
her care.
 Slide of girl doing aerobics
Her current situation is that at the age of 23 she is still bed
ridden, tube fed, catheterised, and nursed on a ripple bed.
She receives total nursing care from her mother and
     the only doctor responsible for her case is her broad-
shouldered general practitioner. She still has total body
pain and only sleeps 4 hours out of 24.
This case demonstrates the reality faced by severe cases of
ME and the tendency for the medical profession to
abdicate responsibility for them.
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    Slides of three graphs
These are slides showing the progress of the
severity of paediatric ME/CFS over a 6-8
year period in a consecutive series of 49
cases from North Durham.
The first slide shows the relatively
optimistic picture in that about a third of
cases make a virtually total recovery,
usually over 2-3 years.
     Slides of three graphs
The next slide shows that a minority of cases (7
out of 49) were severe at the time of follow up.
The third slide shows the larger number of in
between cases who over all were improving but
were not yet cured. These slides show how
unpredictable a condition this is and how wide can
be the fluctuations both of relapses and
improvements.
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        Remaining slides
The remaining slides contain extracts from
the CMO’s report especially with respect to
paediatric ME/CFS. I did not have time to
cover all these slides in my presentation to
the enquiry.
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posted:4/11/2011
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