News

Statement Issued to “UTV Life” Magazine Programme on Tuesday 8th April 2008

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 this condition, 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 with this workload - 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 Minister McGimpsey, since last August. In November he promised the NI MEA that he would produce plans for local Ulster Services in December 2007. His recommendations have yet to appear.

2. The Severely Ill

The NI MEA has many families left to cope alone with a severely-ill child. Mothers have to provide 24-hour cover, unassisted, and this 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 in his pocket.

3. Research for a Cure

Unfortunately there is no cure for ME, and no effective treatment. The UK NHS plan of 2007 offers 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 by the NHS 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 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. Unfortunately, these doctors receive no Government funding, and their research is paid for by patients themselves.

The NI MEA strongly believes that the focus of NHS treatment and research must shift from the psychological to the biological.

NI MEA 8th April 2008”

(Statement ends)

Additional statements by the NI MEA

• The NI MEA wants research for a cure, and of course prefers biomedical research.
• The problem that may surround any proposed Ulster-based research is that most of the world-class Ulster ME researchers already have permanent posts elsewhere.
• The NI MEA feels that a more immediate realistic priority is to seek basic NHS treatment on the ground here in Northern Ireland
• The NI MEA has always supported biomedical researchers such as Dr Vance Spence, and both the Association and individual members contribute to MERUK.
• The NI MEA applauds any and all funding given and fundraising undertaken towards biomedical research.

News & Events

Breaking down the ME Barriers

BARRIERS to understanding the 'hidden' illness of ME will broken down at a major conference, hosted by the Northern Ireland ME Association on Saturday 1 April at Belfast's NTL Studio in the Waterfront Hall. It is estimated that up to 7,000 people in Northern Ireland have ME.

Leading expert on ME Dr Betty Dowsett who will deliver the keynote address said she was delighted to be able to come to Belfast to speak at the event:

"ME is a debilitating physical illness, I very much look forward to talking about the realities of this much misunderstood condition".

Ken Hull, Chair of the Northern Ireland ME Association, said the conference was an important opportunity to learn more about ME and CFS.

"Too often these people are not given the right support, too often the illness stays hidden behind closed doors.

"This conference will explode the myths about ME. It will demonstrate how effective management of the condition can improve the life of people with ME, and provide an opportunity to hear leading experts talk about ME.

"But more importantly, it will be a chance for people with ME to meet, share experiences and learn more about how the NI ME Association can help."

Other speakers at the event will include: Dr Noel Scott and Jayne Perkes, CFS Service, Belfast City Hospital; Dr Larry Martel, Paediatric Advisor to NI MEA; Dr Sylvia Bolton, Education Advisor to NI MEA; and Alex Howard a leading authority on alternative therapies for managing ME/CFS.

The conference will run from 10.00am to 5:00pm on Saturday (April 1). Admission is free.

For further information contact John Hart on 028 9066 1086 or 0779 147 0512

Notes to editor

1. ME (Myalgic Encephalomyelitis) or CFS (Chronic Fatigue Syndrome), as it is also sometimes known, is a potentially severely disabling and chronic illness. It affects all age groups, including children and teenagers, and people from all walks of life. The cost of this illness cannot be calculated - lost skills, productivity, education, careers, financial and personal independence, relationships. There is also the cost of state benefits payments, medical consultations, test and treatments. However, scepticism still exists about this illness, which is neither fully understood nor totally accepted.
2. The Northern Ireland ME Association (NIMEA) exists to offer support and information to all those affected by ME. IT was established in the mid 1980's by a group of people with the condition who organised their own self-help groups. Initially affiliated to the UK ME Association, NIMEA opened a Belfast-based administration office in 1989. In June 2000, NIMEA took the decision to become a totally independent charity registered in Northern Ireland, to enable it to provide the best possible local services for those with ME in the region.
3. The report of the Independent Working Group on CFS/ME, set up by the Chief Medical Officer (England), published January 2002 estimated that 0.2-0.4% of the UK population had ME/CFS.
4. Dr E G (Betty) Dowsett studied medicine at Edinburgh University, worked as a GP in London and then retrained in microbiology and infectious diseases at the London School of Hygiene and Tropical Medicine. She helped create the National ME Centre at Oldchurch Hospital, Essex. Dr. Dowsett is honorary medical adviser to a large number of local ME Support Groups throughout the UK.