12.05.24 – World ME Day – Belfast, Northern Ireland
By Joan McParland, founder, Hope 4 ME & Fibro NI
Today, the Hope 4 ME & Fibro NI community stood at the historic gates of Stormont united by our shared challenges and hope for a better future.
Ten years ago, in 2014, we rallied here with a silent demonstration, collecting thousands of signatures that demanded the attention of our leaders – a call for the urgent establishment of specialist M.E. services in Northern Ireland.
Our gathering today renews and intensifies this demand, underlining the critical need for immediate action and robust support for those living with Myalgic Encephalomyelitis (M.E.).
The outdated NICE Guidelines on ME/CFS, CG53, in place since 2007 and only revised in October 2021 to NG206, had recommended treatments like Graded Exercise Therapy (GET) which subsequent research and patient experiences proved to be harmful to patients.
Cognitive Behavioural Therapy (CBT), was used as a way to diminish patient experiences rather than help support them to mentally and emotionally manage and cope with living with a very real and physical illness. These changes marked a significant shift in understanding but have yet to translate into improved care for our patients in Northern Ireland, who remain in desperate need of professional and compassionate medical support.
Our call at Stormont today is charged with urgency. The absence of commissioned M.E. services in Northern Ireland has left our patients without the specialist care they critically require.
Intermittently for well over a decade, the community relied on being able to pay for a private consultant from London, but this service was disrupted by the pandemic and unfortunately had not been able to be resumed, leaving a void filled only by despair. With the impending retirement of our metabolic/endocrinology consultant who showed a keen interest in M.E., the prospect of having no medical professionals familiar with this complex condition becomes a harsh reality.
This situation has placed an undue burden on general practitioners, many of whom lack the necessary training to effectively manage M.E. and are disadvantaged due to being unable to refer patients to a secondary care specialist or consultant. The disparity in disbelief, stigma of and lack of understanding around the illness among healthcare providers has led to a postcode lottery of care, where the quality of treatment depends heavily on the knowledge and belief of individual practitioners. This is a grave injustice to those afflicted.
What we urgently need is for M.E. to be recognised in Northern Ireland as a legitimate, severe medical condition by all healthcare professionals, organisations, and political figures.
We demand the immediate commissioning of specialist M.E. services and a dedicated medical lead in Northern Ireland, supported by recurrent financial resources. Furthermore, the newly revised NICE Guidelines on ME/CFS NG206 which were endorsed by the Department of Health and circulated to healthcare professionals by the deputy chief medical officer of Northern Ireland in January 2022 must be implemented across all health and social care services immediately.
Education is crucial. M.E. must be included in the curriculum for medical students and part of ongoing training for all healthcare professionals. This will ensure that future generations of healthcare providers are better equipped to understand and treat M.E. and related conditions. Hope 4 ME & Fibro NI have created a 2-part educational programme for professionals who can earn three hours of CPD points by registering for and completing through the charity.
In fact Minister for Health Robin Swann recently highlighted the need for M.E. to be highlighted in the medical curriculum.
Awareness programs must be extended to dispel the stigma associated with these illnesses, promoting a more empathetic and informed approach within the medical community and beyond.
We call on our politicians to take decisive action. We need the government to facilitate the negotiation and establishment of M.E. specialist services and to ensure that the revised NICE guidelines are applied throughout our healthcare system. Accountability mechanisms should be put in place to ensure these services are not only promised but delivered.
Our political advocates need to speak up in the Northern Ireland Assembly and at Westminster to champion the cause of those living with M.E.. By fostering greater awareness and pushing for the implementation of essential services, they can play a crucial role in transforming the lives of thousands.
The path to achieving these changes has been fraught with administrative and logistical setbacks, as evidenced by the repeated failures to secure a dedicated M.E. consultant. These challenges underscore the systemic issues within our healthcare recruitment and retention strategies, which must be addressed as part of broader reforms.
As part of our ongoing advocacy, Hope 4 ME & Fibro NI has launched the DISCOVER ME campaign. This initiative includes a tour of our educational VR film, Discover ME, across 13 libraries across the country in partnership with Libraries NI, aiming to immerse viewers in the realities of living with M.E..
This powerful film, created by Professor Deepa Mann-Kler, has already begun to change hearts and minds, providing a visceral, empathetic insight into the daily lives of those affected by these conditions.
It is time for acknowledgement, action, and advocacy. Our community cannot afford any more delays in receiving the care and recognition it deserves. We have united here today to demand immediate change and to assert that we will accept nothing less.
Join us, support us, and help us forge a future where M.E., Fibromyalgia and other related conditions such as Long Covid are not just recognised but adequately addressed within our healthcare system. Together, we can ensure that no one is left to fight alone.
For more information about the campaign go to hope4mefibro.org