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.

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• 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...

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• 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!

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• STORY 2
• A 14 year old doctors 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
  dont 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.

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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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Sarahs case - next two slides

• Sarahs 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.

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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.

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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
  CMOs 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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