Long Covid in the media and social media 2022

There were many threads that this may applicable to, but in the flux of long COVID as we see insurance starting to push the age old tropes , perhaps this is pertinent
Mods feel free to move if more appropriate thread

https://twitter.com/user/status/1535766528527740928

 

History on a repeat loop ?
I had never heard of this - parallels with today are spooky.
https://twitter.com/user/status/1535689416647114752

 

Despite the confidently wrong claims of some ideologues, not knowing about Long Covid is not protection against. Obviously, what century is this even that it has to be said?

Several comments from pwME and pwLC but many are from people who clearly have not heard of LC and experienced the same, although more commonly on the order of weeks and months.

Professors of neuroscience don't seem any better informed than the general public. Amazing failure of public health. I wonder if he's familiar with MUS/FND and can't make the connection that it's the same thing he's confused about.

https://twitter.com/user/status/1535649006734528512

 

"What’s in a name? ‘Long Covid’ ‘post-acute Covid syndrome’. What does that make you think of? Tiredness? #longcovid is covid related THROMBOTIC VASCULITIS. Sounds serious, right?"

I'm not sure she understands that, if the public at large believe something to be just tiredness, it doesn't matter what words are used to describe it. And it is probably better to wait until full replication establishes that all Long Covid issues are caused by clotting issues before changing its name to what is suggested.

 

I can't take him seriously at all, given his favourable quoting of de Boer.
https://freddiedeboer.substack.com/p/twelve-theses-on-disability?s=r

And the fact that he doesn't understand the immune system or autoimmunity very well. He cites the lack of a cytokine signature, but no autoimmune illnesses have a clear repeatable cytokine signature. Cytokines are paracrine signalling molecules- they have little function in the blood. If there is significantly elevated cytokines in the blood, then this generally suggests either sepsis/cytokine storm syndrome or that there is excessive inflammation leading to spill over into circulation. But on the contrary to popular belief, many autoimmune symptoms can be due to the presence of autoantibodies blocking or stimulating signals, in the absence of excessive inflammation.

 

UK doctors with long Covid say they have been denied disability benefits

"Doctors who worked on the frontline during the pandemic and have been left with long Covid say they have been denied financial support by the UK government, with some left with little option but to sell their house.

Months or even years after an initial Covid infection some people continue to have symptoms, from fatigue to brain fog. According to the Office for National Statistics, as of 1 May an estimated 2 million people in the UK reported having long Covid, as the condition is known.

Now healthcare staff in the UK have told the Guardian that despite being left with serious impairments as a result of long Covid, they have been turned down for personal independence payment (Pip), a non means-tested benefit helping people with the extra living costs of their chronic illness or disability."

https://www.theguardian.com/society/2022/jun/13/uk-doctors-long-covid-say-denied-financial-support

 

https://twitter.com/user/status/1536276334275612672

 

This is really unhelpful. It may terrify quite a lot of people and it is full of false arguments.

 

Just an endless nightmare where people believe they're helping while they're just screwing everyone. Giving the illusion that there are treatments, just because there is a huge business pushing useless treatments.

https://twitter.com/user/status/1536142678097805313


https://www.nychealthandhospitals.org/test-and-trace/after-care/long-covid/

Many patient groups and researchers are working on studies to better understand the root cause of Long COVID and how to treat it. Recovery time varies between people, but rehabilitative and therapeutic approaches can help alleviate symptoms for people with Long COVID.

In addition to its medical impact, Long COVID also has social and economic implications, particularly for populations already disproportionately burdened by health inequity. Fatigue and pain can affect mobility, concentrating at work is harder with brain fog, and anxiety and depression can alter one’s outlook on life. The Test & Trace Corps’ AfterCare program is here to support New Yorkers with Long COVID by connecting them with resources that meet their health and social needs.​

At least there seems to be some sort of financial support available, but the general thinking that the problem is solved and only needs enough clinics is unstoppable, reality just doesn't get in the way of an ideological bubble.

I filled in a form later and some of the resources literally contradict one another:

• Focus on improving your general health, and making lifestyle changes, like eating more fruits and vegetables and moving your body a little every day
• Manage your fatigue (feeling very tired or weak). Fatigue is a common symptom of Long COVID.
  • Learn about rest and ways to manage your fatigue. such as how to pace your physical movement

​

Also keeps recommending keeping a detailed journal. Not a single physician has ever looked at anything I've written down. All this does is place the whole burden on the patient to manage their case.

And most of the clinic listed are rehabilitation programs. The gravy train won't stop.

 

Where did this DeBoer person come from with his silly "theses"?
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This and following posts have been copied or moved to a new thread
'Disability as identity' - discussion thread

 

it’s reminiscent of the Spiked article regarding Long Covid. Presenting patients as meandering, sick role seeking, upper middle class whites is a time honored bipartisan trope. In fact it may be the only principle that left and right can recite in unison. Someone, perhaps the always eloquent Dave Tuller, should write an editorial about this canard, and how it transcends party politics.

 

What is meant with disability as identity? Does it just mean viewing myself as disabled?
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Go to this thread for further discussion on this topic:
'Disability as identity' - discussion thread

 

There's a few mentions of ME/CFS in this article and some good input from Jaime Seltzer:

 

Health boards not publicising long Covid services, says expert
https://www.bbc.com/news/uk-scotland-61787957

Prof Duncan said: "Staff in some health boards have said to us that they are purposely not publicising the pathway, because they fear that if they do, they will have so many referrals that they will not be able to meet demand.

"There is a lack of proactive publicity, despite the fact that in late 2020 every health board said that these services were there for patients who need them.

"We know from other research that patients are going to primary care and being told by their GP that they don't know where to send them."​

The thing that baffles me about this is that seemingly no one in this system objects to this. There are people employed to run and administer a healthcare service that is deliberately being kept hush, I guess you need to know the right handshake, so they don't fail to meet demand. Which they do, obviously, they are not meeting the demand, it's just that it doesn't get recorded anywhere.

So they accomplish the same outcome, systemic neglect and generally refusing to fulfil their duties, while, I guess, feeling good about it? Madness. Everything about how medicine deals with chronic illness is worse in context and the more context you add the worse it is. This is the kind of level of incompetence and failure that can only happen after decades of mismanagement and essentially making failure normal and expected.

This is Potemkin medicine, built for show, entirely hollow and a product of indifference.

 

I'm guessing you are referring to this one which I have found can be read for free here:
Lifting the fog
Kayt Sukel

https://www.sciencedirect.com/science/article/pii/S0262407922010247

 

Are these Cocoa Krispies-loving hamsters a key to cracking long Covid?

https://www.statnews.com/2022/06/10...m_source=twitter&utm_campaign=twitter_organic

https://twitter.com/user/status/1536833801371848704

 

https://www.fiercebiotech.com/biote...op-sparks-end-puretechs-bid-treat-coronavirus

What's wrong with these people, haven't they heard of the PACE study?
If people fail to walk further you simply have the floor re-varnished and tell everyone it's no longer safe to
continue and declare the trial a success.

 

https://twitter.com/user/status/1537034226129944576

 

91-second video clip

https://www.bbc.com/news/av/uk-england-york-north-yorkshire-61804221


An 11-year-old with long Covid says it is 'very difficult and frustrating'.

An 11-year-old with long Covid says it is 'very difficult and frustrating'.

The mother of an 11-year-old girl with long Covid said she just wants her daughter back to her normal, active self.

Freya, from North Yorkshire, says she feels tired all the time and gets headaches, backaches and rashes and has to use a wheelchair.

An estimated 117,000 children aged under 16 in the UK have suffered from long Covid, according to the Office for National Statistics (ONS).

Before getting the coronavirus she was a keen footballer and took part in dancing shows. Her mum Emma said: "We just want the old Freya back."