Month: January 2025

Hope 4 ME & Fibro Northern Ireland recently hosted an evening that highlighted the devastating effects of post-viral illness, through an exploration of the striking similarities between Myalgic Encephalomyelitis (M.E.) and one group of Long Covid patients diagnosed with Covid-induced M.E..

The event provided information centred around M.E., including a screening of an episode of ‘Dialogues From a Neglected Illness’, followed by a compelling Q&A session with renowned experts and advisors to the charity, Dr. William Weir and Prof. Tom Trinick, OBE.

Held inside Newry’s Mourne Country Hotel, the October 4 event was aptly titled ‘The M.E. & Long Covid Connection’.

Fourteen years on from its inaugural event and campaign launch, the charity has held 16 major conferences and provided virtual webinars, as well as presentations to GP surgeries and Trust headquarters across Northern Ireland.

Speaking on the importance of the charity and its work, Joan McParland, MBE, explained that there is a shocking lack of formal support for sufferers and their families or carers, in Northern Ireland, something that Hope 4 ME works hard to combat.

She said: “There was a recent coroners inquest in England into the death of 31 year old Maeve Boothby O’Neill, severely affected by M.E., and who tragically died at home as a result of malnutrition. The inquest highlighted a number of serious failings in the way that people with very severe M.E. are cared for by the NHS.

“The coroner’s ‘Prevention of Future Deaths’ report, outlined a number of recommendations and immediate actions for the Department of Health and Social Care, NHS England and the National Institute for Health and Care Excellence, to take. The establishment across the country of a small number of specialist ME/CFS centres with dedicated hospital beds, for the assessment and management of people with very severe ME/CFS, being a key priority.

“The politics behind M.E. not being recognised as a severe illness and disability, worthy of NHS services equitable to any other condition, are immense and multi-faceted, not just here in Northern Ireland, or the UK, but globally.

According to Joan, patients on the ground are left today with little or no formal support or health services. At times it can even take years to receive an accurate diagnosis, often sourced privately at great personal cost, with important guidance towards safe and appropriate self-management from the doctor, often lacking.

She explained: “Our job as a charity has been to host education conferences for health care providers since 2011, to raise their awareness of M.E. and associated illnesses. Research shows that early diagnosis and early intervention can give patients the best chance for improvement, and to avoid a worsening of symptoms and overall deterioration.”

October 4 saw a specially-curated video and slide presentation made by Rebecca Logan and Joan McParland shown to attendees. Rebecca, formerly an A&E nurse and fitness instructor, was diagnosed with Long Covid in 2020, and now M.E..The video was aptly named – ‘Long-Covid & M.E. Cousins’ and the presentation offered a powerful look into the numerous parallels of living with Long Covid and M.E., a condition that affects millions worldwide.

Speaking about the importance of these discussions due to a severe lack of government funding and exploration, Joan said: “We’re the only all-volunteer led charity in N.I. offering a free, CPD (Continuing Professional Development) certified M.E. course along with free information packs for healthcare providers, and also providing support for patients and family members.

“I could never have imagined that getting sick with a sudden flu-like, viral illness and developing M.E., 26 years ago, would also plunge me into what’s been described during a Westminster M.E. Debate as ‘the greatest medical scandal of this century’—yet here we are since the first documented case nearly 100 years ago in Los Angeles County Hospital, still without services, a diagnostic test, effective treatment, or cure. ‘The Tangled Story of ME/CFS’ film accurately documents how over the last 50 years, properly structured biomedical and behavioural research have been constantly obstructed by a powerful psychiatric lobby and explains why M.E. patients still face stigma, disbelief and how the fundamental systemic injustice continues.”

Linda Campbell, Hope 4 ME Chair, added: “It is scandalous that patients and their families have to do all the work. The education and recognition should have been in place long ago.

“We have had to push every step of the way, and even now, the government is only just starting to acknowledge the issue, but it’s still us doing the work behind the scenes.

“The work we’ve done has been essential in pushing for better recognition and education, but the struggle for proper care and understanding continues.”

During his speech at the event Dr. William Weir, a retired Infectious Disease Consultant with a particular focus on the immunology of infectious disease and M.E., shared his expertise on the pressing need for comprehensive research and clearer clinical guidelines.

Also in attendance was Prof. Tom Trinick OBE, who recently retired as Clinical Director of Laboratory Medicine at South Eastern Trust, and who ran a Fatigue Clinic for patients with conditions including M.E., CFS, Post-Viral Syndrome, and Long Covid, who offered his insights into the medical challenges faced by those living with M.E. and Long Covid. Both experts agreed that the lack of effective treatment options is a significant barrier to improving patients’ quality of life, and that continued collaboration between the medical community and patients is essential.

The poignant event not only educated attendees, but also fostered meaningful dialogue with healthcare decision makers about the future of NHS M.E. services and research, and the need for continued advocacy for those affected by these debilitating conditions.

For more information about Hope 4 ME go to hope4mefibro.org