Transcript courtesy of the Dutch ME/CFS Association
Seminar 33: ME & children, Part 2 – Dr. Nigel Speight, consultant paediatrician. Broadcast 11th February 2014
Are there possible treatments for children with ME?
At the moment we have no curative treatment for ME, neither for children nor for adults. Hopefully some day we will have. If we can come clean and admit that we don’t have a curative treatment, we should probably stop using the word treatment and use the word ‘management’. And then we have to talk about different management strategies.
I personally have a feeling that the efficacy of Cognitive Behavioural Therapy and Graded Exercise has been, perhaps exaggerated and it certainly isn’t a curative treatment and its advantages can be actually quite marginal. There is a treatment in the form of immunoglobulin for which there is some evidence from randomized controlled trials. I think it is a great pity that these have not been repeated in recent years. But I have had some therapeutic success with immunoglobulin in my most severe cases and this is an area for future research.
Otherwise the management of a child with ME should be a simple, supportive, sympathetic, validating, empathetic approach in which the doctor, as I have said, gives continuity and support throughout the illness together with good advice.
What should absolutely be avoided with a child with ME?
There are some things that children with ME deserve protection from. They deserve protection from their own drive to do too much, because children naturally want to get better quickly and will exploit any temporary remission by tending to overdo things. So helping to advise them to protect them from those tendencies. After that of course there are many other sources of pressure on children not least from their parents, from their families, from their doctors and from the educational system. And again the main role of a paediatrician can be to protect the child from these pressures and allow them to convalesce at their own stage.
How can a child with ME be protected from being forced to go to school?
There is always a pressure from the educational system to try to get children with ME to go to school even when they are not well enough for this. I think this is where the doctors have to be firm and to override the pressures from the education. They have to say this child is not well enough for school. I sometimes say it is harder to have ME mildly than it is to have it severely because you have so many more options. So the child who is operating at about 70 % of full capacity can just about attend some school and therefore the doctor has to help the school to be very flexible and understanding about the condition. So they don’t keep sucking the child into more pressure.
It is sometimes easier for children to be off school completely and to have home tuition which is an ideal way of delivering education to sick ME children. And for them to allow themselves to catch up later when they recover from their ME.
What is the main instrument to protect children from being threatened with removal from their family?
There is a very unfortunate and regrettable tendency for some children with ME and their families to be subject to a sort of persecution by child protection agencies and this is extremely unfortunate and painful. The most important way to prevent this is the child being under a paediatrician who has made a confident clear diagnosis of ME, and for him to make it clear to all the other agencies that he or she believes in ME as a physical illness. This is not a psychological illness, it is not due to the parents being overprotective. And if the paediatrician gets it right, the child is protected; when they don’t get it right it is frightening to see the number of people who will then get it wrong from education to social work to psychiatry and I have personally been involved in 30 very, very distressing cases all due to this sort of failure to protect.
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