Long Covid in the media and social media 2022

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A 20 minute segment on ABC Australia with:

Anne Wilson, the new CEO of Emerge Australia
Dr David Putrino, Mount Sinai Health System

How long COVID is putting the spotlight on chronic fatigue syndrome

I think Anne Wilson is starting to acquit herself well in interviews, particularly when it comes to pointing out how debilitating ME/CFS can be and the neglect and mistreatment of sufferers.
 
Moved post

Inside Health 15th March 2022

Long Covid revisited

Inside Health

It’s a long Covid reunion on Inside Health. We first met Jo, Neil and John in February 2021 when they were 12 months into the condition.

Another year on, we catch up with them to see if they are any closer to making a full recovery. We explore how a virus can cause such prolonged symptoms, with Dr David Strain from the NHS Long Covid Taskforce, and see if we are any closer to treating long Covid.

PRESENTER: James Gallagher
PRODUCER: Beth Eastwood

This was a very interesting programme featuring Dr David Strain talking about people with Long COVID having symptoms like ME, and three such people being interviewed:

https://www.bbc.co.uk/programmes/m0015b0g
 
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I noticed a few articles this week trying to pass a noticed increase in strokes, clots and other vascular events in young people on lifestyle and diet (probably trying to milk the Bieber stroke story). I can't help but react about similarly as when watching a horror movie where the characters make all the damn worse decisions except those are scripted for that effect so this is so much worse.

Anyway:


 
Long covid could change the way researchers study chronic illness
https://www.washingtonpost.com/outlook/2022/02/25/long-covid-recover-chronic-illness-nih/

(Could be paywalled but worked for me in incognito/private mode)

Only started reading but it's well-researched, goes places only a handful of journalists have gone before:

Even the name “long covid” — and the insistence that it deserved serious investigation — came directly out of patient testimonies that gathered momentum on social media. (Compare that with the name “chronic fatigue syndrome,” established by the Centers for Disease Control and Prevention in 1988 in part to avoid linking the disease to a potential viral trigger and indicate that its cause was still unknown.)​

One of the 2 authors:


Although this:

“We have a strong effort in patient engagement,” said Walter Koroshetz, co-chair of the Recover Initiative, in response to the patient critiques.​

is an especially poor response to people pointing out that the patient engagement is inadequate. Reeks of the usual response of "no evidence of reported harm" to people reporting harm.
 
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I don't think this has been shared before? Haven't listened to it myself yet

ScienceFriday What We're Learning About Long COVID Symptoms And Their Causes

quote:
There’s still a lot that we don’t understand about the underlying causes of these symptoms. No one knows why some people develop long COVID, while others don’t. But over the last two years, researchers have slowly accumulated more knowledge about the drivers of long COVID, and how to best treat it.

Ira speaks with two people intimately familiar with long COVID: Dr. David Putrino, director of rehabilitation innovation at Mount Sinai Health System in New York, New York, and Hannah Davis, co-founder of the Patient-Led Research Collaborative based in Brooklyn, New York.

Click to expand...
 
rvallee said:
I noticed a few articles this week trying to pass a noticed increase in strokes, clots and other vascular events in young people on lifestyle and diet (probably trying to milk the Bieber stroke story). I can't help but react about similarly as when watching a horror movie where the characters make all the damn worse decisions except those are scripted for that effect so this is so much worse.

Anyway:


Click to expand...


Any insights into the Svengali behind this ME informational session? I also find it somewhat paradoxical that clinicians would posture as experts regarding a condition that remains so enigmatic it hardly lends itself to any sort of expertise.
 
Came here to post it. Other than the odd use of CFS/ME, from an American production, it was surprisingly good. It mentions how the early response was to use exercise but was found out to be harmful, just like for us. They did their research, it's mostly good.
 
Metro.co.uk The stigma of Long Covid: Why people don't believe it's real

quote:

Unfortunately, however, more knowledge of the syndrome may not mean wider support for sufferers.

So-called contested illnesses, of which there is scant biological understanding among the medical community – like chronic fatigue syndrome (CFS), fibromyalgia, and multiple chemical sensitivities (MCS) – present similarly to Long Covid.

When CFS was first identified as a distinct entity in the 1980s it was described as ‘yuppie flu’ and ‘shirker syndrome’, and even now a large proportion of doctors simply don’t believe it exists.

Sufferers of various chronic illnesses have been labelled lazy, spoiled, hypochondriacs, or told their symptoms are ‘all in their heads’, despite evidence across the board that this isn’t true.
 
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