Long Covid in the media and social media 2023

Lenny is clueless. I interpret his ramblings as a nod to GET/CBT being effective. It’s shameless overconfidence

 

Sharing the free article version here too

"Long-neglected chronic conditions finally come into the spotlight"

https://archive.is/bbq8m

 

https://www.scientificamerican.com/...s-are-calling-attention-to-chronic-illnesses/

Nothing new here, and some of you may disagree with some of what she says about illnesses like long Covid and ME, but another sign that long Covid is allowing illnesses like ME to get more attention in various widely-read publications.

 

From 2022

 

Yeah, sorry I didn't notice the date. A family member who reads Sci Am sent it to me, so I assumed it was a recent piece.

 

Somehow, this was put under a mental health heading. I guess being mistreated is mental illness?

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.

Facepalm:

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.

 

Perfectly encapsulated by this reply to Kate Stott's Twitter thread from an actor —

 

https://twitter.com/user/status/1633205781083594753

 

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.”​

 

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.

 

https://twitter.com/user/status/1634387831685537792


https://batemanhornecenter.org/wp-c...62pYEOOB4JT_Y_cmC-eeIOoefObXwHRDsGT6w5Kl6oH7q

 

I don't think anyone at the ER here would pay too much attention to this tbh.

 

An ME patient bringing any sort of educational literature to a physician is likely, in my estimation, to only confirm that physician’s view regarding ME patients: neurosis, hypochondriasis, heartsink, etc

 

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.

 

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.

 

Thread on Long Covid Web here, Canada: Long Covid Web

 

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?

 

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.