Month: May 2024

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The outdated NICE Guidelines on ME/CFS, CG53, in place since 2007 and only revised in October 2021 to NG206, had recommended treatments like Graded Exercise Therapy (GET)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 

Belfast Lord Mayor Councillor Ryan Murphy has launched the powerful Discover ME campaign which begins on World ME Day.

The Discover ME campaign has been organised by the Charity Hope 4 ME & Fibro NI, as part of an ongoing initiative to raise awareness for the medical conditions Myalgic Encephalomyelitis (M.E.), Fibromyalgia, Long Covid and other Post Viral Syndromes (PVS) such conditions can demonstrate overlapping characteristics.

The campaign, designed to deepen public and professional understanding of chronic conditions like M.E., will begin on World ME Day where significant landmarks such as Parliament Buildings at Stormont and various council buildings are to be lit up in blue to symbolise solidarity and support for those affected by M.E., Fibromyalgia and Long Covid.

Having teamed up with Libraries NI, the campaign will then tour 13 libraries across Northern Ireland giving the public, politicians, educators and healthcare professionals the chance to experience the powerful Discover ME film in Virtual Reality (VR).

Lord Mayor Councillor Ryan Murphy said he was delighted to launch the campaign.

He added: “I’d like to commend Discover M.E.’s innovative approach, harnessing some of the best of our innovation talent in Professor Deepa Mann-Kler’s company Neon to create an immersive, hard-hitting campaign. It’s going to increase awareness and understanding of these chronic medical conditions which are unfortunately negatively impacting on so many people’s lives here. 

“Partnerships like these will help to drive medical progress and treatment forward and I encourage people to take the time to discover more about these conditions through the Discover M.E.VR experience at their local library.”

The 13-library tour across the country will start on May 14 at Lisburn and Falls Road libraries before moving on to Holywood Arches and Bangor Library on May 15, Portstewart and Grove Library on May 21, Omagh and Derry City Library on May 28, Antrim and Lisburn Road Library on May 29, Portadown and Newry Library on June 3 and finishing the tour at Belfast Central Library on June 4.

Julie Reid, Deputy Head of Services for Libraries NI said they were delighted to be supporting a powerful educational campaign like Discover ME across their network.

She added: “Libraries NI is pleased to support this initiative as it raises awareness of the significant impact that conditions like M.E. and Fibromyalgia can have on individuals’ lives.

“Our libraries serve as pillars of support and compassion for many members of the local community, offering valuable resources and information on a wide range of health-related topics. We hope that the upcoming events in libraries will provide a platform for people to gain a deeper understanding of the personal experiences of those managing the daily challenges of M.E., Fibromyalgia, and other illnesses.”

At each library location, visitors will be able to have the opportunity to put on a VR headset and experience the six-minute Discover ME film themselves.

Hope 4 ME & Fibro founder Joan McParland MBE said developing the Discover ME film into a VR experience introduces M.E. and addresses the stigma and misinformation surrounding the disease.

She explained: “We felt it was important to turn the film into a VR experience because it’s a unique way to view the message. Because it is in VR you are completely immersed in the patient experiences – they’re sharing the hard hitting reality of living with M.E. in their own words” 

Linda Campbell, chair of Hope 4 ME & Fibro added: “The film allows viewers to be immersed in the sight and sound. In the viewings we’ve already facilitated with healthcare professionals and the public we’ve seen an increased impact of the film because it is in VR. The individual is immersed in the experience, which proves to be both memorable and emotive. 

“Increased awareness and education of M.E. is achieved as a result, and this then becomes a learning and discussion point to share with others.”

The Discover ME film was directed and produced by Professor Deepa Mann-Kler, chief executive of Neon and visiting professor of Immersive Futures at Ulster University.

“When Professor Mann-Kler first approached us with her previous VR technology used to help self-manage pain, we saw an opportunity not just to educate but to foster genuine empathy towards M.E., amplifying our message through the power of storytelling” said Joan.

“Our mission with the Discover ME campaign is to challenge the myths and misrepresentation surrounding M.E., and other related conditions like Fibromyalgia and Long Covid and to show the harsh realities faced by patients through a compelling VR experience. Professor Deepa Mann-Kler has brilliantly transformed this into an animated VR film that goes beyond conventional awareness efforts.”

Professor Mann Kler said using virtual reality allowed the charity to provide a visceral understanding of the lives disrupted by M.E. and similar conditions.

“How we made Discover ME was as equally important as the final piece, where the process of co-creation has lead to a truly authentic and compelling insight into the lives of people from all walks of life and their lived experiences. As a storyteller, it was an honour to be trusted in this way. 

“This campaign is so important in helping raise awareness. Discover ME also now forms part of the Ulster University and Queen’s University Belfast respective Medical Schools course curriculum. That will help change people’s lives, by training future Doctors” she explained.

The Discover ME campaign also includes a series of awareness billboards, social media and a series of additional events for the medical profession and educators in the area of M.E., Fibromyalgia and Long Covid.

Discover ME Film is a partnership between Hope 4 ME & Fibro NI, Silverink, Enter Yes and Neon and was funded by NI Screen.

Additional funding for virtual reality headset equipment was provided by The Hospital Saturday Fund and monies raised by patients and their family members.

For more information about the campaign go to hope4mefibro.org