Act now to prevent ME crisis- MLA warns

MLA Robbie Butler has challenged the Stormont Health Minister to “act swiftly to give additional support and facilities to ME sufferers and their carers before such conditions become the next epidemic across Northern Ireland”.

Mrs. Joan McParland from Hope 4 ME and Fibro Northern Ireland told the Ulster Star that the charity receives no funding from the Department of Health.

She said: “The charity is run on an all volunteer basis, by patients and with no core funding from the NI Department of Health.

“There are an approximate 7000 ME patients in NI. We have been campaigning for a Specialist NHS Medical Consultant as early diagnoses can literally save lives.

“The committee are inundated with requests for help from desperate patients and parents who often have nowhere to turn, in fact doctors and hospital departments are referring patients to the charity and asking for information packs.”

“Misdiagnoses rates are high and previous surveys here showed many professionals feel unequipped to offer correct diagnosis and management advice and would prefer if there was a specialist consultant to serve this neglected patient population in Northern Ireland.

Assemblyman Butler issued his challenge to the Health Minister as he commended the work being done by charities, such as Hope 4 ME and Fibro NI which campaign to raise awareness of conditions like Myalgic Encephalomyelitis (ME) and Fibromyalgia.

Mr Butler said: “Charities, such as Hope 4 ME and Fibro NI must be praised for their sterling work in ensuring that these conditions do not slip beneath the radar of society when it comes to the Stormont Executive providing the necessary funding and resources to assist sufferers and their carers.

“I also commend the work being done by Hope 4 ME Fibro NI campaigners Joan McParland and Belinda Dale and others in this vital frontline awareness activity.

“And we must not forget the work of Millions Missing, which is a vitally important campaign as it will keep the plight of ME sufferers and their carers firmly in the public focus.

“While there are many more equally serious conditions, diseases and illnesses. I urge the Health Minister to ensure that ME does not become the forgotten condition of our health service,” said Assemblyman Butler.

Outlining the effects of the disease, Mrs McParland added: “Men, women and children as young as six can suffer from ME there is no effective treatment and full recovery is rare. The main symptoms include, overwhelming fatigue unrelieved by rest, nausea, dizziness, joint and muscle pain, light and noise intolerance, cognitive issues, digestive problems, short term memory loss and even periods of transient paralysis.

“ME usually appears, after a viral or flu type illness, children miss schooling, valuable careers are lost and many patients remain bedbound for decades and virtually invisible to the world, only cared for by distraught family members.

“We provide monthly meetings, on the first Tuesday of every month in The Mourne Country Hotel, Newry 7-9.15pm. We bring specialist speakers and researchers from around the world, to NI and host a yearly conference. Educational events are also organised for healthcare providers.”