‘Specialist help for ME sufferers is lacking’

August 26, 2008

From the Belfast Telegraph letters page, August 26

We write referring to the Belfast Telegraph article (August 12) on a mother coping with her 15- year-old son David, who suffers from ME.

As this article highlighted only one family's experiences and views, we thought we would like to make you aware of our experience which differs considerably from the one in your article.

We are parents of a teenage daughter who has severe ME. Five years ago as we struggled to find a diagnosis, we watched our formerly  active child become bed-bound, unable to hold a conversation and  suffer from extreme light and sound sensitivity.

Like the mother in your article, we also despaired over the total  lack of specialist services for ME sufferers in Northern Ireland.

However, our experience of support with the illness has been  different to that expressed in your article. In contrast, never once  has psychiatric help been suggested to us, which confirmed our  opinion that ME is not ‘all in the mind’.

In the early days of the illness we searched long and hard for advice and help. As a result, we have been provided with some level of support for which we are very grateful. We have had domiciliary visits and telephone conversations from a local consultant, offering  effective medication and advice about ‘pacing’ and general support.

Over the years, visits and practical support have been provided by an  occupational therapist and a physiotherapist, both of whom have  succeeded in understanding our daughter's illness and have therefore offered only appropriate advice. In addition we have had good support  from our local ME Association here in Belfast.

But like the family in your article, we agree that specialist  services for ME sufferers here in Northern Ireland are sadly lacking  and this needs to be urgently and properly addressed.

But also we would want to commend those professionals who have  offered excellent help and advice in our situation.



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