Long Covid in the media and social media 2023

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rvallee said:
Why does he keep saying they know about this when they clearly don't? That annoys me so much. No, you are not familiar with this. WTH?

And you can't treat symptoms because medicine only knows how to do that when they know the biological mechanism. FFS get a grip about what you're working with, you failed to do something and have to start from scratch, accept and move on, damnit.
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Lenny is clueless. I interpret his ramblings as a nod to GET/CBT being effective. It’s shameless overconfidence
 
Somehow, this was put under a mental health heading. I guess being mistreated is mental illness?
Almost all of the individual respondents said they felt frustrated, angry and not listened to or believed. A common phrase used was they felt they were being ‘gaslighted’ by the medical profession.
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Almost all. What an embarrassment. Literally, they put the mistreatment, negligence and gaslighting from healthcare services as mental illness. Not from the illness, though, it's just what we "feel". Awful.

On the issue of lack of public awareness, someone argued there is a website. So there's that. Stellar work.
Almost all individual respondents spoke of a lack of awareness among medical professionals, GPs in particular, in terms of assessing patients, diagnosing long COVID and the ongoing treatment options
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Almost all.

Facepalm:
The result of misdiagnosis with conditions such as ME/CFS, depression, anxiety and the menopause was a concern among a number of individuals who responded to the call for views
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Not learning much here, uh?

The rest is mostly a bunch of blablabla. Generally speaking: the patients are well-informed, are reporting a disastrous level of negligence and mistreatment, providing a clear roadmap for what needs to be done, while the medical professionals gush about how great they're doing, and may think about doing a bit more if someone tells them to. They're also largely suppressing anything about PEM and ME, which only the patient advocates mention.

So in a nutshell: the medical profession is the problem here, healthcare is failing everyone, and they have no intention of doing anything unless ordered to. They're not even interested.

But, really, this is the only relevant takeaway: the medical profession is the problem.
 
rvallee said:
Generally speaking: the patients are well-informed, are reporting a disastrous level of negligence and mistreatment, providing a clear roadmap for what needs to be done, while the medical professionals gush about how great they're doing, and may think about doing a bit more if someone tells them to. They're also largely suppressing anything about PEM and ME, which only the patient advocates mention.
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Perfectly encapsulated by this reply to Kate Stott's Twitter thread from an actor —

What I want to know is what is causing people to feel ill through exercise, nothing at all is getting looked into this, they are quite happy to leave us ill in houses, I don't see any of this changing, they talk a good game but no action is taken.
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CNN: How to help friends and employees living with long Covid

Be compassionate: Many with long Covid feel stigmatized or invalidated by a world eager to move past the pandemic. So at a most basic level, Prior suggests, begin from a place of empathy.

“There is a sort of toxic idea that people with complex illnesses or invisible illnesses are making it up or faking,” Prior explains, so it’s important to communicate “you understand that they’re going through something and that you see them, even if you can’t really fully understand what they’re going through.”

Güthe says it’s also important to acknowledge the seriousness of the situation. “Don’t take this lightly. The consequences can be devastating.”​
 
janice said:
I get access via Libby app and my MK library card.
I have photos of both editors front piece and page 14 article. How can I attach here if of interest?
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Thank you for the offer, so kind of you!

EDIT - Deleted my comments about attaching files. I posted without seeing the message saying the file was too big.
 
Yes you need to try and educate them in order for them to help you (or rather not harm you) and at the same time really make sure you don't look like you're trying to educate them to be taken somewhat seriously.

"Pamphlets" of any kind don't help in my experience. Even if they're scientific papers.
 
Leila said:
Yes you need to try and educate them in order for them to help you (or rather not harm you) and at the same time really make sure you don't look like you're trying to educate them to be taken somewhat seriously.
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I went to the ER in the early 90s for vertigo just after I was dx with CFS, the ER doctor's first words were "well, you don't want that". What does that even mean?
 
Fizzlou said:
https://www.longcovidweb.ca/our-team

Seen a couple of tweets about this. Lots of names positive and negative including Paul Garner and Michael Sharpe.
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Oh, that's what this is about. Holy hell. I saw a tweet mentioning this and didn't know what it meant.

It's probably just the people who got involved in any way, but this means our BPS overlords are heavily involved in many international efforts. What does Flottorp even has to do with this? There is zero international collaborative effort that isn't patient-funded, but when it comes to ruining everything, there is loads of it. It's like this entire system is built backward.

That explains why it failed, although there are so many names in there. Dysfunction fails just as well in the end.
 
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