Long Covid in the media and social media 2023

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We have circled back, and it circled us back to hell. It's very hard to put in context the magnitude of this failure, given how it was the lowest of hanging fruits to have ever hung from anything.

It's such raw incompetence and complete failure of duty and ethics. I don't think that our civilization has seen professional failure of this magnitude in a century, maybe even beyond. And that includes the fact that most modern industries did not even exist back then.

In business and politics? Lots and lots of comparable failure. But not from professionals, expertise and basic professionalism simply prevent failure of this size to happen in so many ways.
Put more clearly: Republicans who will not touch anything related to COVID anymore *are* more open to talking about post-viral (including MECFS, dysautonomia, clotting) research and care. #LongCovid
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Basically:
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A short article from a team in Canada:

People with long COVID continue to experience medical gaslighting more than 3 years into the pandemic

Medical gaslighting occurs when health-care practitioners dismiss or falsely blame patients for their symptoms. While new information about long COVID has become more readily available, some patients continue to face gaslighting and feel that their symptoms are treated less seriously by some health-care professionals.

This dismissal can erode trust in the health-care system and can also lead to stigma and shame.

Preliminary findings from our ongoing study with long COVID patients indicate that, when medical practitioners do not validate a patient’s condition, this extends into community networks of family and friends who may also dismiss their symptoms, contributing to further stigmatization at home.

Medical gaslighting can present additional barriers to treatment, such as not being referred to specialists or long COVID clinics. This can, in turn, compound other symptoms such as fatigue, and exacerbate the psychological symptoms of long COVID, such as depression and anxiety.

Medical gaslighting isn’t new. It has been documented by patients with other chronic conditions, such as myalgic encephalomyelitis or chronic fatigue syndrome. And while this is common for patients with non-visible illnesses, medical gaslighting is more commonly experienced by women and racialized people.

Long COVID patients also note gender biases, as women with prolonged symptoms feel they are not believed. This is particularly worrisome, as studies have found that women are disproportionately more likely to experience long COVID.
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Long COVID patients also note gender biases, as women with prolonged symptoms feel they are not believed. This is particularly worrisome, as studies have found that women are disproportionately more likely to experience long COVID.
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Studies ? They quote a single anecdotal number at one clinic from early 2020. Whole thing reads like a clickbait promo for the author's (two are communications specialists) for their institution.
 
TV2 has an article today about Long Covid researcher Arne Søraas who has sent several reports of concern to the Norwegian Institute of Public Health (FHI), but has not been heard. He does not agree with how they have gathered information about Long Covid in reports policies have been based on. He says the reports have not reflected the severity of long covid and that patients feel the institute is downplaying the illness.

TV2: Toppforsker ut mot FHI - Opplever at sykdommen dysses ned
google translation: Top researcher against FHI: - Feels that the disease is being suppressed
 
I hope Søraas speaks out more often going forward. I think there are more than a few who have been surprised at how they are met when they try to talk about long term effects. More people to experience (albeit to a lesser extent) what patients have been living with and talked about.
 
Long Covid Skepticism is a Slippery Slope

The first question we ask about complex chronic illnesses shouldn’t be whether or not they’re real.

https://conversationalist.org/2023/...-skepticism-chronic-illness-media-both-sides/

(quote below has added line breaks)
The Conversationalist said:
As anyone who has it will tell you, long Covid is very real, but if you’ve been reading these articles purporting to explore LC’s reality or unreality — questioning if society has it “wrong” — you might think that it is not, or that the people who have it (and illnesses like it) do not have a physical ailment at all, but instead a mental health one.

While it’s not surprising that more right-leaning publications have engaged in long Covid denialism, the trend of left-leaning legacy publications like New York Magazine and the New Republic doing something similar is, to me, cause for concern.

As a disabled, nonbinary feminist who has dedicated a large chunk of their career to exploring the tangled issues of gender, chronic pain/illness, and the society-wide disbelief of these illnesses, I think the insistence on showing “both sides” of long Covid is a slippery slope.

“Skepticism” of complex chronic illnesses is nothing new. I and many other chronically ill people have seen “skepticism” of our disabilities play out in media, amongst the general public, and in the medical field plenty of times before.

Diseases such as multiple sclerosis (MS), rheumatoid arthritis, and ulcers were all thought to be psychosomatic at one time.

In more modern times, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), fibromyalgia, Postural orthostatic tachycardia syndrome (POTS), and many other chronic illnesses and pain conditions have been explained away as mysterious, and therefore Maybe Not Real, too.

Yet time and time again, it’s been shown that they are.
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ahimsa said:
Long COVID isn't novel: other viruses in history have had similar “long” arcs — with devastating repercussions
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Back in 1918, these mysteriously persistent long flu symptoms wreaked havoc on human health and local economies. For example, many claim that debilitating lethargy caused by this post-viral syndrome led to the "famine of corms" in the region that is Tanzania today, as farmers lacked the energy to plant, harvest, and shear months after getting sick.
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Links to —

“The incapacity caused by the flu and its after-effects seriously affected the country’s economy for some time,” wrote Phillips in 1990, in Black October, his comprehensive study of the 1918 epidemic in South Africa. In what is now Tanzania, to the north, post-viral syndrome has been blamed for triggering the worst famine in a century—the so-called “famine of corms”—after debilitating lethargy prevented flu survivors from planting when the rains came at the end of 1918. “Agriculture suffered particular disruption because, not only did the epidemic coincide with the planting season in some parts of the country, but in others it came at the time for harvesting and sheep-shearing.” Kathleen Brant, who lived on a farm in Taranaki, New Zealand, told Rice, the historian, about the “legion” problems farmers in her district encountered following the pandemic, even though all patients survived: “The effects of loss of production were felt for a long time.”
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Hmm, perhaps Ricky Gervais might like to read some history.
 
Not just RG, as according to my memory's SW is reputed to have said words to the effect that ME/CFS simply didn't exist in most places. That it was a condition only found in cultures like the UK.

I also belive he specifically said it didn't exist in France. Which may be sophism, as while the name may be different, people In France occasionally chosing to speak French, the thing that is being named dies exist, no matter what name it is given.
 
It's really hard to understand how so many people, actual experts, listened to and read hundreds of such testimonies, presumably, and genuinely could not recognize any of the obvious patterns. This has been recorded for decades, all so much alike, all impossible to miss.

And yet it was not just missed, but entirely dismissed. I saw this coming before most, and all I did is read the testimonies. I didn't even look for patterns, in fact I tried very hard not to see them, to falsify my assumptions. But they were simply far too obvious to miss.

It's seriously very hard to be this incompetent, to fail so miserably while having all the perfect conditions to succeed. There are so many things and people who are supposed to act long before it ever gets this bad, every other profession has managed this. Medicine is old and it shows, it carries too much baggage from pre-modern times.
5 patients on this FDA panel: 1) Stephanie, had respiratory symptoms, did a #LongCovid clinic, got pulmonary rehab, included treadmill & bike, 24 sessions of respiratory rehab bc that's what insurance covered, but she is still continuing alone, took amantadine but didn't like it
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2) Jackie, #LongCovid since Jan 22, has new onset ME/CFS & dysautonomia for COVID. Was prescribed exercise, learned the hard way that it was harmful. Bad PEM. Learned pacing, still uses pacing. "Exercise still causes me harm now." Takes >30 pills/day. Treated inhumanely.
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Jackie: finding providers who know how to treat ME/CFS and dysautonomia helped most, uses IV hydration to prevent ER visits. Uses hormone replacement therapy, MCAS treatments, midodrine, and others. Treatments need to address autonomic dysfunction, viral persistence, & others.
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3) Daniel @dsethlewis: when #longCovid takes your independence, security, freedom....all you have is your hope for treatments. It's been 3 years - we don't have 3 more years. Current treatments are all symptom management, none are cures, none substantially help.
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Daniel: Takes midodrine and a beta blocker for POTS. We need ambitious new medications that change this disease. Fast track all the tools at your disposal! Doctors need clear and direct clinical guidance to prescribe treatments.
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Daniel: "This illness is defined by loss and we are losing everything, even our memories of who we are." #LongCovid Super well done speech, could not capture all of it, recommend watching if there's a recording!
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4) Tammy: #LongCovid patient in a small rural area near Appalachian mountains. Didn't have access to PCR testing, so couldn't get into Long Covid clinics when they became available. Ruled out cardio factors but have neurological factors. Took 18 months to *begin* to find help.
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Tammy: Have tried: physical therapy, vitamins, beta blockers, gabapentin, statins, pain creams/muscle relaxers, all with limited success. Felt a lot worse after two weeks of physical therapy; had to discontinue due to exercise intolerance.
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Angela: Has new onset ME/CFS, most debilitating symptom is post-exertional malaise, also bad mast cell activation symptoms Biggest barrier to care has been the lack of providers who have understanding of viral-onset illnesses After reinfection, symptoms are worsened!
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following Traumatic Brain Injury and stroke protocols; had tried to do graded exercise therapy for pulmonary therapy but caused fainting and seizure-like symptoms Has seizure activity, becomes cognitively not present for 60-90 minutes at a time
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Lots more under the thread.
 
Sean said:
committee members noted “concern” as patients reported being unable to receive a correct diagnosis or proper treatment.

They are not getting 'proper treatment' because there isn't any yet.
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And in large part because of the refusal to properly record reality, which is fraudulent distortion as it creates the impression that the problem is far less significant than it is, when support and resources are always based on that record. It's a loop as fraudulent as a police district that simply stops recording a type of crime, then asserts that this type of crime has been eliminated in the area, which leads to stopping all measures to reduce or address this crime.

Or a company that doesn't record workplace injuries, then claims they have no workplace injuries anymore and takes tax credits and other benefits as a result. This is blatantly fraudulent, there are supposed to be obligations, clearly only paper requirements, about recording illnesses.

The loop is deliberate and it feeds on itself. And it will keep looping as long as they can get away with fraudulent misreporting of reality and everything that follows it.
 
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