Transcript courtesy of the Dutch ME/CFS Association
Seminar 32: ME & children, Part 1: Dr. Nigel Speight, consultant paediatrician. Broadcast 28th January 2014
What are the main characteristics of ME in children?
One of the most important things is that the issue is very clear cut. I find witnessing ME in children one of the most convincing arguments for this being a physical process. Because you can see a happy healthy child in a nice family, struck down out of the blue. That’s what makes it seem like a physical illness and helps us to argue against the psychiatric view of this condition, which has done so much harm for so long. The other thing is that the number of other conditions that can mimic ME in children is very small and the differential diagnosis is really quite easy. So it is not as difficult as it is in adults to be sure that the child has got ME.
Are there subgroups of children with ME?
In general children with ME can be divided into groups according to severity. The mild groups have their activity levels reduced to between 70 and 90 % of normal; the moderate have from 40 to 70 % of normal and the severe have from sort of 10 % to 40 % of normal. And then the very severe, which is a very unfortunate group of patients, is the very severe, bedridden for long periods of time and that is someone who is below 10 % of normal activity levels.
Are there different treatments for different subgroups?
The general principles of management of ME should be the same for all. That you don’t make them worse and you support them and protect them and try symptomatic treatment. And you don’t let them do too much. But some people believe in the advocacy of treatments like Graded Exercise and Cognitive Behavioural Therapy. The evidence for these has only been done in people who are mild to moderate and are ambulant. Are able to walk to clinics and be helped. There is no evidence that those management techniques should be applied to the severe group.
What should paediatricians be aware of?
When you are handling a case of paediatric ME there are a lot of things you should be aware of. For instance there is the influence of the extended family. It is very, very important that patients with ME are believed in and feel validated by all their nearest and dearest. And quite often there is a member of the family, sometimes a little bit distant, separated, a former husband, an aunt living many miles away – often a semi-professional person – who has strong views. And these people can undermine the families’ belief in the child with ME and can be very disruptive. And I think it can be important for the paediatrician to detect these problems and maybe address them by offering to speak to members of the extended family who aren’t believing.
Which test should paediatricians prescribe?
When a paediatrician first sees a new case of ME he should do a battery of routine tests, which would exclude all common or rare conditions that might be mimicking the condition. In addition, if they are following the child up for several years they should consider repeating that battery of tests after two or three years. Because children can still develop other conditions on top of their ME and follow up off course it is important to make sure you haven’t got the diagnosis wrong. But clinical assessment is probably more important than a large number of tests in this condition.
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