Long Covid in the media and social media 2022

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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.

 
"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?"

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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.
 
LarsSG said:
In the Pipeline blog:

Long Covid, Long Other Things

Derek Lowe's blog (which is generally an insider perspective on the pharma industry) is usually quite good, but this one, which takes a somewhat skeptical view of LC, ME, etc, is pretty frustrating.
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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.
 
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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
 
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://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.
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.
 
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dave30th said:
Where did this DeBoer person come from with his silly "theses"?
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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.
 
There's a few mentions of ME/CFS in this article and some good input from Jaime Seltzer:

Why So Many Long COVID Patients Are Reporting Suicidal Thoughts

Myalgic encephalomyelitis/chronic fatigue syndrome, a post-viral condition so similar to Long COVID that many long-haulers meet its diagnostic criteria, is one example. Decades ago, doctors widely and incorrectly believed that patients’ symptoms—including crushing fatigue, often exacerbated by physical activity—were all in their heads. Even today, ME/CFS patients—as well as those with similar conditions, like chronic Lyme disease and fibromyalgia—are often misdiagnosed with mental-health issues because their providers don’t understand their conditions. Suicide is also disproportionately common among people with ME/CFS, research shows.

Adriane Tillman, who has had ME/CFS for a decade and works with the advocacy group #MEAction, remembers trying to get doctors to understand the extent of her physical symptoms, which at first kept her bedridden—only to be diagnosed with depression.

While Tillman was grieving for the life she’d led before she got sick, she says reducing her debilitating condition to depression was too simplistic. “I just thought, okay, I’m not explaining this enough,” she says. “I brought my husband [with me to the doctor]. I brought my dad. I brought a Powerpoint presentation.” Still, the best she got was an increased dose of antidepressants.
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Jaime Seltzer, director of scientific and medical outreach at #MEAction, says research on mental health needs to better account for the realities of chronic illness. For example, many depression screening questionnaires ask if the individual struggles to get out of bed in the morning, but fail to distinguish between feeling unable to get up and being physically unable to get up. “Until we have a depression scale and an anxiety scale for people who are physically disabled…people with physical disabilities will continue to be misinterpreted as depressive or anxious even when they are not,” Seltzer says.
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Seltzer says all doctors and mental health practitioners also need a better understanding of what will—or will not—help people with Long COVID and other similar chronic diseases. Approaches like cognitive behavioral therapy, which focus on changing thought patterns, often aren’t helpful for patients with very real physical symptoms, she says. “Clinicians need to be aware that this is a thing, and they need to not be dismissive about it,” Seltzer says. They need to “not attribute it to stress, and therefore place the responsibility on the patient to calm themselves down, and not attribute it to an incorrect manner of thinking.”
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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.
 
rvallee said:
Same with brain fog. You regularly see articles, and there's a recent one in New Scientist, where they proudly announce they're making progress with brain fog, and then you read and it's so obvious that they don't even understand what the problem is at all, haven't even begun to work at it because there is a complete information breakdown because of damn language issues.
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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
 
Long COVID, brief dream: Phase 2 flop sparks end of PureTech's bid to treat coronavirus complications

PureTech Health’s long COVID trial has come up short. The drug candidate failed to help patients with the condition walk farther, prompting the company to drop plans for further studies in the indication.
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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.
 
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."
 
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