HSE Clinical Practice Guidelines for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (Ireland)

[Evergreen]

@Tom Kindlon of the Irish ME/CFS Association shared leaflets they were sent about the Lived Experience meetings.

Some excerpts:

Meetings will take place online on Microsoft Teams

There will be two meetings:

• an introductory information meeting, expected to last approximately 45 minutes
• a Lived Experience Group Meeting, expected to last 90 minutes, including a break

The introductory information meeting will provide an opportunity to meet the people leading the Lived Experience Group and others living with ME, to learn how the group will work, and to ask any questions.

We recognise that it may be difficult for you to attend an online meeting but would still like to be involved. If so, please contact us by email to discuss other ways of sharing your experiences.

What to Expect

As a member of a Lived Experience Group, you can expect to:

• Attend an introductory information meeting, expected to last approximately 45 minutes. The introductory information meeting will provide an opportunity to meet the people leading the Lived Experience Group and others living with ME, to learn how the group will work, and to ask any questions

• Attend a Lived Experience Group Meeting, expected to last 90 minutes, including a break
• Receive meeting materials and discussion questions in advance to allow time for review and preparation
• Share your experiences during discussions, if you feel comfortable doing so

Participation is voluntary. You are encouraged to contribute in a way that feels manageable and appropriate for you.

We understand that health and energy levels may fluctuate. We will be as flexible as we can to support your participation and ensure your voice is heard if you wish to contribute.