Hope 4 ME & Fibro Northern Ireland - Announcements Page

22/08/2026

Science for ME forum has published a factsheet on the Management of severe and very severe ME/CFS.

Link to the full factsheet here:https://s4me.info/docs/Management%20of%20severe%20and%20very%20severe%20MECFS.pdf

21/08/2026

We’re delighted to have secured another M.E. awareness and education session for student nurses at Queen’s University Belfast School of Nursing and Midwifery this October.

Rebecca Logan, former nurse, will bring the vital real lived experience of Post Covid M.E., alongside research input from QUB PhD student Tara Anderson on healthcare provider education using our Discover M.E. film.
Thank you to Linda Campbell for her educational input and securing this important event.

Every opportunity to educate future healthcare professionals is another step towards better understanding, recognition and compassionate care for people with M.E. 💜

21/08/2026

💜 Congratulations to Robbie Butler MLA on his appointment as Northern Ireland’s new Health Minister.

For over a decade, Robbie has shown unwavering support for Hope 4 M.E. & Fibro Northern Ireland and the people we represent — listening, learning, raising awareness and standing alongside us in our fight for recognition and better care.

From supporting us at meetings with the Health and Social Care Board officials as far back as 2016,

-hosting our Belfast and Newry, Millions Missing Northern Ireland demonstration campaigns,

-hosting annual conferences in Stormont since 2017 bringing international experts to N.I. to educate decision makers and healthcare providers,

-securing attendance by N.I. Chief Medical Officer in 2018 and previous Health Minister Mike Nesbitt to our 2026 conferences,

-advocating for safe medical-based guidance and understanding of M.E. at the Westminster All Party Parliamentary Group and more!

We are deeply grateful for his longstanding commitment and wish him every success in this important new role. We look forward to continuing to work together to bring meaningful change.

Thank you for never giving up on our community. 💜

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15/08/2026

Thank you ME Research UK

For those living with ME/CFS, basic activities such as taking a walk, reading a book, or even a simple conversation can be the exertion needed to trigger a severe, debilitating crash. Known as post-exertional malaise (PEM), this cardinal feature of ME/CFS is frequently misunderstood, with healthy individuals often mistaking it for their own everyday fatigue or normal exercise recovery. https://tinyurl.com/PEMsymptomsat

In the first deep-dive of our weekly Symptom Saturday series, we unpack the reality of PEM – including its multi-dimensional nature, lived experiences, and key insights from research such as associated physiological changes.

Read more: https://tinyurl.com/PEMsymptomsat

08/08/2026

Thanks to ME Research UK
“Severe ME Day – 8th August – is a day dedicated to raising awareness about severe myalgic encephalomyelitis (ME). Estimates suggest that around 25% of individuals with ME suffer from the severe form of the disease. The impact of severe ME on an individual’s life is profound, leaving many confined to their homes, bedbound, or even immobile.

This day also serves as a remembrance of those who have lost their lives to this debilitating condition – one such individual being Sophia Mirza, a British artist, who passed away aged 32. Her death brought significant attention to the disease, hence her birthday – 8th August – was chosen to mark Severe ME Day.

Read more: https://tinyurl.com/severemeday2026

Severe ME Day – 8th August – is a day dedicated to raising awareness about severe myalgic encephalomyelitis (ME). Estimates suggest that around 25% of individuals with ME suffer from the severe form of the disease. The impact of severe ME on an individual’s life is profound, leaving many confined to their homes, bedbound, or even immobile.

This day also serves as a remembrance of those who have lost their lives to this debilitating condition – one such individual being Sophia Mirza, a British artist, who passed away aged 32. Her death brought significant attention to the disease, hence her birthday – 8th August – was chosen to mark Severe ME Day.

Read more: https://tinyurl.com/severemeday2026

08/08/2026

Today is Severe M.E. Day 💙
Please help raise awareness by sharing this post.

Today is Severe ME Awareness Day (08.08.26) **TW: Upsetting Content**

Severe Myalgic Encephalomyelitis (ME) is a devastating, life-changing multi-system disease. People with Severe ME are often bedbound and unable to tolerate light, sound or touch, and dependent on others for even the most basic care.

Today, we wish to show our support to everyone severely affected by ME and remember those who have tragically lost their lives to this cruel disease.

Please 'heart' react to this post to show your support for those with Severe ME and in remembrance of those we've sadly lost.

07/08/2026

Severe M.E. Inquiry Report

Ahead of tomorrow, we are launching the Severe ME Inquiry Report.

This inquiry, initially started by the APPG on ME, set out to examine the experiences of people living with severe and very severe ME. It found systemic failings across healthcare, social care, and education.

Around 1 in 4 people with ME have severe or very severe ME, and many experience stigma, prejudice and misunderstanding.

The inquiry found key themes that people with severe and very severe ME experienced, including inaccessible care, institutional prejudice and patchwork service provision.

The report sets out key recommendations for action, including establishing a national care framework for severe and very severe ME and mandatory training across health, social care and education.

You can read more and download the report on our website 👇

https://www.actionforme.org.uk/the-more-ill-you-become-the-less-care-you-receive-severe-me-inquiry-report/

We wish to say a huge thank you to all those who provided evidence and shared their experience for the inquiry. Thank you also to Tessa Munt, the APPG on ME, and the 25% ME Group for their support 🙏

05/08/2026

Thanks to ME Association for this free download to share with HCPs

The ME Association now provides a poster, free to download, showcasing the new NHS e-learning CPD modules on ME/CFS.

Please download and share with healthcare professionals, GP Surgeries, and NHS Trusts to spread awareness and ensure patients with ME/CFS are receiving the best possible care.

https://meassociation.org.uk/6k05

ME Association Members will receive a printed copy of the poster in the Autumn edition of the ME Essential magazine, whilst healthcare professionals on our mailing list will receive a copy with the latest edition of ME Medical.

04/08/2026

A Heartfelt Thank You 💙 🤍 💜⛳

We are absolutely delighted that Castlereagh Hills GC Captain Bryan Dallas has chosen Hope 4 ME & Fibro Northern Ireland as their charity to support through fundraising and raising awareness for this whole year!

To everyone at Castlereagh Hills Golf Club – thank you for all your hard work so far and for believing in our work, and for helping us make a real difference to the lives of those patients and their families we support.

03/08/2026

Thanks to the ME Association