US podcast, On Point. - "Lingering Symptoms, Long-Term Damage: For Some, It's A COVID-19 Recovery Reality"

Moderator note:
This thread has been split off from
Possibility of ME or PVFS after COVID-19
And merged with another thread about the same podcast.
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This morning, a public radio program in the USA ran a program on those with lingering symptoms, "the long haulers", post-Covid19, and the link to CFS and ME, were emphasized. See: www.onpointradio.org for June 25, 2020. (If the recording is not up yet, it will be by the end of the day, I believe.) One of those discussing this wrote a piece for The Atlantic, and there are a number of good links in the article on the OnPointRadio website.

 

Ed Yong?

I hope it's Ed Yong. His article was probably the best report so far on the issue.

 

Yes. It was Ed Yong.
(I have been reading things of his for years and really like his work. I was pleased he returned to writing about ME (in conjunction with COVID19 and long -term symptoms). Yong was treated badly by some w/ME.)

 

It's up now. Looks good, am looking forward to hear it.

wbur: Lingering Symptoms, Long-Term Damage: For Some, It's A COVID-19 Recovery Reality

Guests are dr. Mafuzur Rahman and Ed Yong. Link has the reading list.

 

Merged thread

Very good podcast on post-COVID long-haulers on the US podcast, On Point. - "Lingering Symptoms, Long-Term Damage: For Some, It's A COVID-19 Recovery Reality"
https://www.wbur.org/onpoint/2020/06/25/whats-it-like-to-recover-from-covid-19

Features a patient from New York, a medical doctor from New York, and also Ed Yong, who has done a recent article in The Atlantic on the long haulers.

The podcast is long, Yong's part starts at about 14:00 minutes. The doctor then discusses long term complications caused by multiple viruses

 

Great podcast!

 

Excellent interview. Obviously primarily focused on covid but both Dr Rahman and Ed Yong mentioned the risk of ME being a possible consequence for some, and the need for both covid long-haulers and pwME to be taken seriously. Both were very clear about how little is known. Ed pointed out that had ME not been so stigmatised and ignored for all those decades we might have had better answers for the covid long-haulers now. I forget the exact term he used, something along the lines of a preventable disaster.

I'm horrified. Why?! Everything I've read of Ed's to date has been excellent. And even if you don't agree with what a journalist writes, well, you can tell them what you disagree with and why. No need to get nasty. Usually counterproductive, too.
Anyway, Ed, in the unlikely event you're reading this, your work is appreciated!

 

I have shared the podcast to a private FB group who are ME patients with additional, lingering Covid (they suspect, not all have managed to get positive results) symptoms.

 

Here's the quote from Ed Yong:

- Other viral infections and other diseases have led to similar ways of symptoms before and conditions that present in similar way, like ME or Chronic Fatigue Syndrome. People with those conditions have long been dismissed. They’ve been told that their diseases aren’t real, that they’re making things up, that their symptoms are all in their head. Research into these conditions have long been underfunded. And as a result, now when we have this pandemic and untold numbers of patients, thousands - maybe tens of thousands - who are presenting with very similar problems we really are still in the dark about how to both prevent these from progressing on to something like ME. And we don’t know ways of treating and helping these patients. And I think that is a wholly preventable tragedy that could have been avoided, had people with similar problems not been kind of gaslight and disbelieved for many decades.

 

I should have added that in a number of places, Ed Jong points out the similarity in symptoms and treatment by the medical community to what ME patients have been experiencing and that ME has been ignored for years, leaving us ill-prepared to deal with the long term consequences of another viral infection now. At one point, he says, "It shouldn't have taken a pandemic to make people care."

IMO, this podcast could be useful from a US advocacy perspective and I would imagine elsewhere as well.

 

Absolutely! The phrase "kicking the can down the road springs to mind".

The likes of Wessely, Sharpe, Carson, Chalder etc., whether intentionally or not, have fed into the establishment view that fobbing ME patients off with bad research, treatments that don't work (at best)& put patients into conflict with the medical profession, denial of benefits, denial of social care and support is cost effective.

In the long term it really isn't. Just because they managed to "disappear" us from view, doesn't mean our absence hasn't cost the economy and our communities dearly.

Like any major problem that isn't addressed as soon as it can be, the lingering post covid health problems has the potential to end up costing governments and society much, much more than it otherwise might have. The cost in terms of human quality of life and suffering is incalculable.

 

@Ravn - the BAD treatment dates back to the XMRV debacle.

And yes, Ed Yong, if you are reading this your work is very much appreciated!

 

yes

YES

YES!

LOUDER

 

Ed Yong really gets it.

 

Just like ... lockdowns?

 

Transcript:
https://riahsweirdjourney.com/2020/...e-its-a-covid-19-recovery-reality-transcript/

https://twitter.com/user/status/1277581364292988929