Ed Yong Articles on Long Covid & ME/CFS

I have just listened. Thank you @dave30th and thanks to Ed Yong.

One thing that stood out for me was the interesting balance between the research and journalism that David has done on ME/CFS mainly focused on the false psychogenic model and bad research and its impact on patients. David has spent a lot of time reading the BPS research and investigating the UK and other European countries where that approach has dominated.

Whereas Ed came to the subject more recently from the perspective of US LC organisations and individuals, and telling their experiences, and has more of an approach of not wanting to give attention to bad research and to focus more on teasing out and explaining patients' experiences of symptoms such as fatigue, PEM and brain fog and telling that clearly.

Both approaches are necessary and both come to the same conclusion that ME and LC with PEM are real disabling physical conditions and that exercise therapy makes us sicker, and that pwME and pwLC are still being gaslighted by clinicians who haven't changed their mindset about exercise being good for everyone and who don't listen properly to patients.

Ed mentioned a group of clinicians, I think he may have meant Long Covid physio who had spent their careers doing exercise therapy who have changed their view through getting LC. Did I hear that right?
 
Trish said:
Ed mentioned a group of clinicians, I think he may have meant Long Covid physio who had spent their careers doing exercise therapy who have changed their view through getting LC. Did I hear that right?
Click to expand...

Yes, I think so. That section stuck with me particularly; the notion that as soon as clinicians start suffering from the illness themselves, they become unreliable witnesses. It's a particularly vicious part of the gaslighting process.
 
Trish said:
Ed mentioned a group of clinicians, I think he may have meant Long Covid physio who had spent their careers doing exercise therapy who have changed their view through getting LC. Did I hear that right?
Click to expand...

At 15:10 —

So there's a group called 'Long Covid Physio' that I really respect [...] Daria Oller and others. So [...] long Covid is enough of a thing that there is a group of people whose entire professional life revolves around exercise and using it as a therapeutic tool — who now have long Covid and are now recognising and saying 'in this context, if you have PEM, exercise is bad.'

And I think the really fascinating dynamic here is: because they are now patients with these neglected illnesses, their expertise gets dismissed too, right? You should think [...] well here are the perfect sources - people who have understood this world deeply, who have used it in their careers - and are now, you know, have this epiphany because of their own personal experience - that in this context exercise can be damaging. So we should listen to them above everyone else. We should prioritise what they are saying. We should pay very close attention to what they are saying. And it just seems that there are people out there, the minute they get sick they get lumped into this bucket, that's people who are not objective, can't be believed, can't be trusted narrators of their own experiences, and it's bullshit. And it's so damaging and so frustrating to watch it happen in that way.
 
And it's an absolute treat (and very typical of Ed Yong) that the transcript of the video is made up of properly written and edited captions that form a properly readable script, not the usual autogenerated rubble.
 
Just odd notes from the video.....


Empathy, curiosity and kindness.....values to live by.

He was 'broken' by the pandemic but rescued by birding which he shared in his community, as he shared his Pulitzer prize money.

So many ideas. My head is spinning. He needed two long breaks to survive the pandemic.
 
Every time I come across Ed Yong he impresses me more. What I particularly like about this talk is that he describes, without ever milking the audience for sympathy, how he deals with the psychological fallout of his previous job in a practical way, without sentimentality. There is no alternative feel-good garbage, but a practical plan to deal with it maturely.
 
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