HSE National Myalgic Encephalomyelitis (ME) Clinical Guideline

 

News in Ireland

HSE National ME Clinical Guideline

In an extract from a recent edition of The Times (Ireland & UK) newspaper the HSE stated that it was developing a national clinical guideline for ME in collaboration with patient and service user partners, supported by the Department of Health.

"Currently there is no consistent approach to treatment of people with ME and management is based on treatment of some of an individual’s symptoms. The clinical guideline aims to address this," a spokesman said.

"People living with ME may see doctors from several different clinical specialties, depending on the symptoms they experience and the relevant speciality into which those symptoms fall, eg neurology, cardiology and oral health. There are no specialist doctors within HSE services who manage the complex pathophysiology of ME in its entirety, and knowledge and experience of managing ME is variable."

- An extract from The Times newspaper (23/02/25) from an article about a triathlete affected by Myalgic Encephalomyelitis (ME)

Full Article

Please see the full article in The Times newspaper, an article about James Walton, ME sufferer from Ballerin, Co Derry entitled 'How a Promising Triathlete was Left Bedridden by Cruel Disease', written by Julieanne Corr and published on Sunday February 23rd 2025

James Walton was aiming for the world championships when he was suddenly struck down by ME. He is now calling for more research into ME.
Photo by Gordon Thomson

'The Lost Years: A Personal Journey'

 

    "Myalgic Encephalomyelitis is a complex condition and baffles most doctors. It is rarely taught at medical schools despite it being recognised as a neurological condition by the World Health Organisation in 1969. Some doctors still have not heard of it and recently a doctor said so and then asked how to spell it.

I found it difficult to be accepted by the specialists and it was only when l developed heart problems that l was treated with respect by local cardiologists.

However, a Professor of Neurology at a local hospital acknowledged ME as a legitimate, physical illness and was very supportive.

When l saw him back in 1998, he acknowledged that the brain is heavily implicated. Since then, inflammation of the brain has been connected to the illness. 

Some doctors seem to be out of their depth which has resulted in patients like me continuing to do research. Until there is wide spread acceptance by the medical fraternity, we will be subjected to scepticism and dismissed as having psychological illnesses when it is not the case."

We are saddened to hear of the death of our friend Kathy Collett who suffered with Myalgic Encephalomyelitis (ME) for three decades.

Our condolences to Kathy's family, friends and members of the global ME community; she will be sadly missed.

The quote above is from a personal story, 'The Lost Years: A Personal Journey', written by Kathy in 2019; please see more of that story via the link below. The full piece from ME Australia's personal stories section recounts Kathys’s difficulties navigating support, understanding and healthcare for ME.

The Lost Years: A Personal Journey -

https://meaustralia.net/the-lost-years-a-personal-journey/

"We are so sorry to hear about Kathy, the passage you quote from her is brave and heartbreaking. Tragically ME is an illness that is extremely difficult to comprehend from the outside and almost impossibly hard to identify from the inside, there can be such profound levels of cognitive and physical dysfunction . 

Reactions are often confusing and opposite to what would normally be expected rendering those most in need living invisible, secret tormented lives." 

- Greg Crowhurst

Rest in peace Kathy