NI MEA Response to UTV Life Slot on ME 9th April 2008.

This statement was issued to UTV Life early on Tuesday morning, 8th April outlining the views of the NI MEA in relation to biomedical research.

The NI MEA has 3 priorities for ME patients in Northern Ireland:

1.The provision of basis NHS Services


2. Specialist support for the severely ill housebound


3. Research funding to find a cure.



1. Inadequate basic services.

There are 7000 ME patients in NI, but NHS support is totally inadequate, especially west of the Bann. There is a lack of local NHS expertise in ME, and GPs and patients in Ulster are left to struggle on as best they can.

In the whole of Ulster there is only one specially-trained member of staff to cope - an Occupational Therapist based at Belfast City Hospital.

An NHS national plan for ME services was published in the UK in 2007, and had been with Minister McGimpsey since last August. In November he promised NI MEA that he would produce plans for local Ulster services in December 2007. His recommendations have yet to appear.

2. The Severely Ill.

NI MEA has many families left to cope alone with a severely-ill child. Mothers have to provide 24-hour cover, unassisted, which severely disrupts family life.

The NHS strategy published last August stipulated that these families must receive adequate home support from doctors, nurses, Social Security and the Benefits Agency. These services will be expensive, and Minister McGimpsey must start dipping his hand into his pocket

3. Research for a cure.

Unfortunately there is no cure for ME, and no effective treatment. The UK NHS planof 2007 offer only coping strategies for ME patients.

Like all other ME charities in the UK, the NI MEA believes there must be a more active search for a cure. We are disappointed that almost all Government research funding has been directed into psychiatric research, and the only treatments offered are psychological coping strategies.

More focused research is being carried out by a number of Ulster doctors. A cure is being pursued by Dr Derek Enlander (ex Belfast) at Mount Sinai Hospital, New York; Dr Jonathan Kerr (ex Belfast) at St George’s Hospital, London; and by Dr Vance Spence (ex Strabane) at Dundee University.

These Ulster doctors are researching the biological causes of ME, in hopes of finding a cure. Dr Kerr, for instance, has found that ME patients have an abnormal gene profile, which may respond to treatment. Unfortuately these doctors receive no Government funding, and their research is paid for by patients themselves.

NI MEA strongly believes that the focus of NHS treatment and research for ME must shift from the psychological to the biomedical.

NI MEA 8th April 2008"
(Statment ends)


Additional Comments from the NI MEA:

• The NI MEA wants research for a cure and of course prefers biomedical.

• The potential problem with any Ulster-based research proposals seems to be that most of the world-class Ulster ME researchers already have permanent posts elsewhere.

• As biomedical research is currently being done in the UK, the NI MEA feels a more immediate realistic priority for us is to seek basic NHS treatment services on the ground in Northern Ireland.

• The NI MEA of course supports biomedical researchers like Vance spence, and NI MEA members contribute to MERUK.

The NI MEA applauds any and all funding raised and fundrasing efforts undertaken in Northern Ireland for biomedical research.