Sounds Like ME - a community conversation

For an audio recording of this article, click the SoundCloud link arrow.

https://soundcloud.com/me-fm-bc-society/may-12-webinar-summary-2022?utm_source=clipboard&utm_medium=text&utm_campaign=social_sharing

Summary notes of the May 12 webinar

Accompanying survey

Examining the Unmet Needs of British Columbians living with Myalgic Encephalomyelitis

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On May 12, 2022, in recognition of International ME Awareness Day, the ME|FM Society of BC was pleased to host a virtual event: Sounds Like ME - a community conversation.

During the event, Society Co-chair Hilary Robertson provided an update on Society work and achievements, and prefaced the ensuing discussion with the following:

"Today we would like you to help us dream about what it might look like in 5 years from

now if health care and services were available. What would your life be like? What would your community do to hold you and your loved ones with caring support?"

Discussion was focused around the four patient themes that the ME|FM Society of BC research identified last year and compiled in the paper “Examining the Unmet Needs of British Columbians living with Myalgic Encephalomyelitis”:

1. Social isolation, loss of identity and the need for emotional support

2. Supports for disease management and how to live with ME

3. Challenges to diagnosis

4. Stigma in the healthcare system

Read the summary notes of the May 12 webinar here. We encourage you to participate in the accompanying survey and share with us your additional thoughts.