YouTube — MassME 2023 Annual Meeting: ME/CFS - Changing the Narrative, with guest speaker Ed Yong

[SNT Gatchaman]

Ed Yong, describing his relationship with pwME/LC as a healthy person.

"I do however know about journalism and about story telling and I'm going to start by talking about that and telling you the story of how I became part of this world."

[30 minutes]

"I am not done with this topic or this community. The last thing I'll say — as I said at the very start — all this started because I said 'yes' to a random friend date* and because I listened. Don't underestimate the power of small acts of kindness or little moments of connection and of stories. I don't know what the future holds for Long Covid or for ME but I do know that it is crucially important for people like you to keep telling your stories and for people like me to keep listening to them."

* with Sarah Ramey, the author of "The Lady's Handbook for Her Mysterious Illness"

 

[Trish]

I have watched Ed's talk. He comes across as such a thoughtful and compassionate person, which is not surprising given the quality of his articles. He tells about how he came to be interested in ME/CFS through a 'friend date' with the author Sarah Ramey, noted above. So he has followed the Long Covid story from the start, and focused on listening to patients as well as 'experts', realising quickly that the most expert were actually some of the patients.

Ed's talk starts at about 24 minutes on the video.
I haven't watched the Q&A section that starts at about 55 minutes.

 

[Helene]

Q&A is also interesting. Someone asked how to get more people to read articles like this. Ed's reply was that there's no magic answer but people can help by sharing it amongst their own networks.

He also expressed frustration that his last Atlantic article "Fatigue Can Shatter a Person" that came out in July is paywalled and gave people wholehearted approval to share a non paywalled link. He said he has sent a PDF link to over 700 people in response to email enquiries and that this isn't the most efficient process.

So my task for today is to belatedly share on my social media - after I've recovered from writing this post that is.

Link is https://archive.ph/sBL8T (as posted by @Shadrach Loom way back when the article came out)

Edit - for clarification