Specialist help for ME sufferers is lacking

Monday, 25 August 2008-

Comments made in the letter page of the Belfast Telegraph re article below

http://www.belfasttelegraph.co.uk/opinion/letters/specialist-help-for-me-sufferers-is-lacking-13948642.html

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.

PAUL AND JANET McCANN

Belfast