Responding to Members’ Concerns: My Care App N.I.

Following contact from several of our members who found their experiences on the My Care App distressing and dismissive, we have now submitted an official complaint and feedback to the My Care App team.

Concerns were raised when members discovered that the app would not accept Myalgic Encephalomyelitis (M.E.) and instead only offered limited or outdated terminology when entering their diagnosis.

Digital health systems should support accuracy, not reinforce outdated or dismissive narratives around M.E. People living with this condition already face significant barriers to recognition, understanding, and appropriate care, and this makes correct representation in digital systems even more important.

We are very grateful to those who got in touch with us about this. Your experiences continue to shape and strengthen our work. We will share further updates once we receive a response.

Read the full submission via the My Care App Feedback form:

Dear Helpdesk Team

The charity has received concerns from a number of our members who recently attempted to enter their diagnosis of Myalgic Encephalomyelitis (M.E.) within the “other illnesses” section of the My Care App.

The system would not accept “M.E.” or “ME/CFS” or “Myalgic Encephalomyelitis” as a valid condition. The only related options offered was “Chronic Fatigue Syndrome” with four levels of severity or "ME Association member."

As the main charity in Northern Ireland, campaigning for specialist M.E. services, providing educational outreach to healthcare providers and working alongside GPNI, QUB and Ulster University on M.E. awareness and education for medical and nursing students, we respectfully request-

Myalgic Encephalomyelitis (M.E.) / ME/CFS is added as a recognised condition on the My Care App.

That the terminology used aligns with NICE guidance and international best practice.

“Chronic Fatigue Syndrome” is not in line with current NICE guidance, which uses the internationally recognised name Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and acknowledges Myalgic Encephalomyelitis as a neurological condition in its own right.

For many patients, being forced to use inaccurate or outdated terminology undermines the seriousness of their condition and perpetuates misunderstanding within healthcare settings.

We believe new digital health systems should support accuracy, not reinforce outdated or dismissive narratives around M.E., as patients with this condition already face significant barriers to recognition, understanding, and appropriate care.

We would be grateful if you could kindly confirm how this issue will be rectified.

Thank you for your attention to this matter.

26/11/2025 Update on My Care App N.I. - M.E. Listing Correction

We are pleased that the My Care App team has responded positively and agreed to address the outdated “Chronic Fatigue Syndrome” listing, which is currently the only option available for people with M.E. when selecting their condition from the drop-down list.

Thank you to the members who raised this issue with us. By doing so, you have helped highlight an important gap, and we hope this has also increased awareness with the software developers at Epic, who design the system.

As we have said before, people living with M.E. already face significant barriers to recognition, understanding, and appropriate care. That is why accurate representation in digital health systems is not just important — it is essential.

The reply from My Care App Team below.

“Thank you for getting in touch with us and alerting us to how this feature of My Care is displaying incorrect wording.

I have raised this with our technical team who have informed me that this list of conditions is provided by Epic, the software company who created My Care.

The technical team have given your feedback to Epic who will review it and make the necessary changes in their next update. Unfortunately we do not have a timescale at this time for when this update will be made and will keep you informed when we know more.”

Many Kind Regards,

Xxxxxxxxxxxx

Manager – My Care Help Desk

21/11/2025