Long Covid in the media and social media 2023

Status
Not open for further replies.
First novelty account I've seen yet. This is sarcastic:
Dolores “Long Covid Purity” Umbridge said:
Exactly - Long Covid needs to stand alone. I hate other groups trying to muscle in on our glorious disease. Long Covid POTS should be renamed Long Covid more serious than conventional Postural Tachycardia. And stop trying to help us we don’t want it.
Click to expand...
 
Yikes, on her (Delores)profile bio it says, "I am here to promote Long Covid Purity - if you are a filthy Mudblood from another virus we don’t want you - that means you CFS and POTS", and yet she's following ME/CFS researchers and pwME?

Is this sarcasm?
 
Mij said:
Yikes, on her (Delores)profile bio it says, "I am here to promote Long Covid Purity - if you are a filthy Mudblood from another virus we don’t want you - that means you CFS and POTS", and yet she's following ME/CFS researchers and pwME?

Is this sarcasm?
Click to expand...
Yes ! Though I think the account holder probably sees it as ironic satire.
 
Mij said:
Yikes, on her (Delores)profile bio it says, "I am here to promote Long Covid Purity - if you are a filthy Mudblood from another virus we don’t want you - that means you CFS and POTS", and yet she's following ME/CFS researchers and pwME?

Is this sarcasm?
Click to expand...
Yeah, it's parody. Holding a mirror, as it said in a comment.
 
Mij said:
Yikes, on her (Delores)profile bio it says, "I am here to promote Long Covid Purity - if you are a filthy Mudblood from another virus we don’t want you - that means you CFS and POTS", and yet she's following ME/CFS researchers and pwME?
Click to expand...
I'm quite sure it must be a parody sort of account.

Btw, short personal story: yesterday a person with LC was asking about the reactivated EBV theory in my group and what we think. And another person with LC replied and also added that now, because of long covid doctors are also starting to make the assumption that other viruses might also cause long-term symptoms. The wording sounded like this was more of a hypothetical thing and something not known before, only due to covid. I don't think this was a terrible comment at all but as it is an ME/CFS group, I wanted to give a more accurate story in my own reply.

So I mentioned the Royal Free outbreak, Lake Tahoe and the CDC and how it was in the news in the US back then, the Dubbo study or the study about CFS and the first SARS outbreak. I also mentioned how the best medical school teaches ME/CFS in Hungary: they included the IOM criteria in the CFS chapter, so the author was familiar with the IOM report, yet nothing else from the report was included, including the statement that longitudinal studies show a link with EBV (and possibly other viruses cause it too). And the chapter is otherwise fully BPS. But this kind of stuff could have been known and even mentioned at medical schools at least in the past couple of years due to the IOM report at least. So the situation is not that they are only hinting at this possibility now, hypothetically, that other viruses might trigger long-term symptoms too but that there has been "hinting" for decades and it was basically ignored. And she just deleted her comment and left the group which was kind of a weird reaction I thought.
 

Attachments

I did a quick search for any mention of ME, I could have missed some though and not listened to them all.

Here they are:

Episode 1

00:13:16:24 - 00:13:33:06
Speaker 2
And just briefly just mentioned me and CFS for people. I mean, most people do know what it means, but CFS is chronic fatigue syndrome and there's definitely an overlap with that kind of stuff and they've been really helpful about trying to as, as Jess said, flag this and say, come on, you need to take this seriously guys.

00:13:33:06 - 00:13:54:20
Speaker 1
I think there's so many shared lessons to be learned because what they are looking at and what they've been experiencing is very similar. And whenever I do a broadcast or a TV program or something, I get people coming to my email box saying, I've had ME for CFS for years. Where were you when I needed you? What? Why didn't you care about me? And the answer is I suppose that we did.

00:13:54:20 - 00:14:18:03
Speaker 1
But there's limited research funding and limited research agenda and it just wasn't doable. And now I think we have that kind of, you know, sort of energy hump to, you know, to get there and serve both communities and get some common answers. And I think that's a really important point because hopefully this will serve as a as a door opening to a lot of people who might be listening right now and thinking, where was this five years ago when I was really struggling?

----------------

Episode 2

00:29:03:21 - 00:29:45:24
Speaker 4
Reaching out to the to the charity, to the parents. I think is the best thing that you'll find out what and yet a child is having the similar symptoms or what is happening at the moment. The only treatment we are receiving is physiotherapy, which yes, is important, but it doesn't help. Some suffers with post extensional malaise, so there isn't much we can do that doesn't set him back as much as we would like to do more increase his activity.

00:38:32:10 - 00:39:00:03
Speaker 3
So I can only assume that there is a a layer of damage disease that is beyond my my current ability to improve for Katy. I mean, if we look at the ME community, I'm told that most children who get the ME type symptoms that we see in long COVID that they that they do get better eventually. But it can be a long time.

00:39:00:22 - 00:39:34:23
Speaker 3
But of course, you know, that I mean is only part of long COVID in some people and not everybody has their ME type symptoms. But for Kitty, she does. And I don't know if she can recover from that bit, but there is other damage or whether she'll be able to recover fully or not at all. And like like Yana said, you know, I'm I have hope, but that hope is getting harder to hold on to, honestly.

00:39:36:10 - 00:40:05:05
Speaker 2
And given how unwell you are, I find it incredible how much you've put yourself out there to keep fighting this fight on behalf of all the families, not least what has been happening over the last couple of weeks with children and their parents being pulled in of social services because they aren't attending school. Can you tell us a little bit about what's been happening and how many more families you've got lined up in a situation like that that you need to help?

00:40:05:05 - 00:40:26:15
Speaker 3
So in the last couple of weeks, we've had two families who've had child protection hearings. One, we've got another six, six, eight families that I'm aware of. I'm sure there are sadly others as well that we aren't aware of. It takes a lot of courage to come forward and ask for help when you're going through something like that.

00:40:27:18 - 00:40:54:22
Speaker 3
The two families that we've just recently helped, one of them has a phone call from child protection to Child Services, who had received a complaint from an A&E department because the child had turned up in a wheelchair with leg pain and they felt that the child was being kept in the wheelchair unnecessarily. And then the parent had a social worker, a house.

00:40:54:22 - 00:41:18:14
Speaker 3
Within 30 minutes of that phone call was interviewed. The child was interviewed. The child was interviewed for a very long time on her own, was very, very upset and fatigued by the experience. And we had to get a the charity actually organized a a specialist pediatrician to come and assess the child and then to give evidence at the hearing.

00:41:18:22 - 00:41:45:08
Speaker 3
And I really believe that if we hadn't have done that, that child would not still be in the situation with her family. I think that there would be there would have been proceedings. And I'm really concerned about this this growing trend. The second child has had been told the family had been told they would a child was going to be removed before Christmas.

00:41:46:22 - 00:42:18:18
Speaker 3
Again, the charity has got a specialist, expert pediatrician to get involved. And they have asked some really important questions. And it turns out that the right processes weren't followed and now the removal of the child has been deferred until after Christmas. And that's going to be an opportunity for the specialist pediatrician to go and do a home visit and gather some additional information to be able to represent the family accurately.

00:42:18:18 - 00:42:28:22
Speaker 3
And again, you know, these are families who can advocate for themselves, for whatever reason. And without the charity, I don't think the right outcome would would happen.
Click to expand...
 
Last edited:
Also noted this from episode 2

00:02:43:09 - 00:03:14:15
Speaker 3
Hi. Thanks for having me. So Kitty and I both got COVID in March 2020. Previously healthy, strong, dancing, active, very outdoors. And we had what is termed as mild COVID. Neither of us were hospitalized and we both isolated in separate bedrooms. I was ill first and then unfortunately passed it to Kitty, and my husband ran a sort of military operation wearing PPE, coming in and out of our rooms.

00:03:14:15 - 00:03:44:07
Speaker 3
In that time. And then we both made a sort of recovery, and it was a more of an improvement rather than returning to our previous level of health. We were still tired. But then about five or six weeks after the initial acute infections of the infectious stage, we we developed what we now know as long COVID. And it really just came on after a doctor had told us that we needed to try harder.

00:03:44:19 - 00:03:57:15
Speaker 3
We ought to do more exercise. And despite feeling really unwell, we followed his advice and that led to chest pain and and then subsequently nearly a year in bed.
Click to expand...
 
The main takeaway from patient testimonies is how truly horrible the gaslighting and ignorance (feigned or legitimate) from doctors is, how non-responsive healthcare systems and how it adds insult to injury. And there's no treatment anyway.

Meanwhile the CDC be like, "hey, talk to your doctors about your little symptoms":
Common symptoms of Long COVID include fatigue, shortness of breath, fast heartbeat, and brain fog. If several weeks have passed since you had #COVID19 and you still have symptoms that interfere with your daily activities, talk to your doctor.
Click to expand...


Just total system-wide failure. Oscar-worthy failure: Everything, everywhere, all at once.
 
After long-COVID-derailed career, Brandon Sutter has hope he could play again

“I’m able to work out again, and just do everyday things. ... I’ve been skating a couple days a week with the (Red Deer) Rebels. ... I can’t quite do the things I want to do, I can’t quite push it to a level I need to, but I’m getting better, and there is definitely hope it will all be behind me by mid-summer.

He’s still undergoing tests, meeting with physicians in Calgary, and even taking guidance from experts in the naturopath community, who have been a big help.

“You hit a point where you’re desperate and you’ll try anything, and low and behold, they’re the ones figuring it out for me,” said Sutter, whose issues have confounded the medical community. “It’s good to have answers.

https://www.sportsnet.ca/nhl/articl...-sutter-finally-has-hope-he-could-play-again/
 
Andy said:
From Chris Ponting on Twitter.

"Free to use: UK #LongCovid proposal (£3m). Fell at final hurdle last week. Co-production, PPI, genetic ancestry, recovery… We’d like to freecycle genetics aspects w/ researchers worldwide. Do get in touch!"
Click to expand...

I was really upset to see this morning that this has not been funded. :( There are little to no good quality studies being funded that I know of (?). Do people think this study will be funded to be done by someone else? I am not familiar with what normally happens - could anyone shed any light or offer context on what is likely to happen next?
 
Status
Not open for further replies.
Back
Top Bottom