Long Covid in the media and social media 2023

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I think that's worth recording off-Twitter.

Since September my best friend Chloé is bedridden with long Covid & ME/CFS.

Today marks almost a month of her biggest relapse to date. She went from being bedridden but awake, present, able to move around to eat, drink and shower, able to lie down on the balcony outside able to speak to me for hours, to think about philosophy (that’s her job!) to having to lie on her back, in the dark and almost complete silence.

I pass her bed and force myself to not interact because it is too much for her. I keep the million questions and observations I have to myself. She doesn’t know what I do during most my days. Every one of my seconds used to be accounted for.

Today, I let myself feel, for the first time since the relapse. I think of myself, of what this all means for me. And I find myself grieving the loss of my friend, my partner, my soulmate.

She’s still here, and as I write these words I see the even and reassuring movement of her covers as she breathes. She’s still here - but she cannot speak to me, she cannot be with me. As much as she wants to. And oh, how she does.

I know because I know her almost as well as I know myself.

I miss her, and she is right in front of me.

We live together, but lately it feels like she has been ripped away from me. Now we simply exist side by side. Because merely existing is almost too much effort for her. She lies in the room below me, in the dark, mostly in silence. She waits for hours to pass, with the tenuous hope that she might feel better.

I care for her, and sometimes she says I spoil her.

I have adjusted my life as much as I could - my house, my work, my social life. I have given this illness hours, days, so much energy, and sometimes a little bit of my own health. I would give so much more. And yet, it will never be enough.

Oh, how I wish it could be enough. How I wish I could lay years of my life for her to get some of hers back.

She wonders if her life is worth living in a world that allowed for her to fall that ill and then abandoned her.

I wonder if my life is worth living w/o her - w/o her laugh at my (sometimes dubious) jokes; without her words and brain to articulate things I mostly intuit; without telling her every single thought that goes through my mind.

Some nights I cry in my bed, thinking of what we’ve both (temporarily, I hope…) lost.

Most days, I fight for her - I fight a medical system that ignores and gaslights her; I fight those who minimise her or would do her harm; I fight the well-meaning idiots who will not learn about her pathology, those who know nothing and yet have all the answers. I’m told fighting is exhausting.

But fighting has always kept me alive - and these days, I feel most useful when I fight. At last, I feel like I am doing something. Something that could make a difference. Something that should make a difference. But nothing does.

So we weep in our respective beds, bc her illness makes it so we cannot even hold each other anymore. She doesn’t tolerate it. Sometimes, I sit at her feet, on her bed. I work on my laptop and she slips her feet under my legs so “[she] feels that [I’m] there”.

And I am. Or I try to be. But she and I, we can’t do it alone.

So we weep, and we quietly (and sometimes loudly!) hate a system that has abandoned us. Abandoned us in our little home, with our little means of surviving, and fighting.

So we weep and we wish for better days, and every day in which she does not improve we can feel the tiny bits of hopes slipping further away from us.

And, as I ponder whether or not I should share how I feel with the rest of the world, I once again feel her “absence” - not knowing what she thinks of something meaningful that I wrote unnerves me. She would find some words better than I did.

Sometimes she expresses my own feelings better than I ever could. Not having her running commentary on my thoughts and feelings feels lonely. Not seeing her when I turn around feels lonely. I love you
@chloe518lc

- I'm with you. THE END
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This is among the best works on very severe ME, depicting its tragic nature in frank language with sharp brevity. The most striking aspect of this thread is how he writes about her almost as if she has died.
I wonder if my life is worth living w/o her - w/o her laugh at my (sometimes dubious) jokes; without her words and brain to articulate things I mostly intuit; without telling her every single thought that goes through my mind.
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The world needs to understand how incapacitating ME is, and the enormous burden it places on sufferers and society. Often the costs of ME, staggering both in terms of human suffering and money, are out of sight and out of mind. Due to lack of support pwME receive, the burden of caregiving often falls on relatives, not health services or disability benefits.
 
rvallee said:
Long story short: in response to the Stanford clinic removing masks in their LC clinics, a few MDs started openly mocking Long Covid on Twitter. One of them is famously-wrong-about-everything Prasad, a prominent COVID maximizer.

Now, we have been openly mocked and bullied this way, and worse, for years, and pushing back against has always lead to DARVO (deny, attack, reverse victim and offender, i.e. "I'm the real victim here"). We know this playbook from our BPS overlords, how they always turned the horrible consequences of their bullying into more attacks on us, abusing their powers behind the scene to pass their ugly bigotry as some sort of valid clinical expertise. Because I guess it's hilarious to mock disabled people?

As a consequence of how we have been attacked far worse in response, there are lots of pwME who are very hesitant in being openly confrontational, in challenging our abuse and our abusers. So, there will be opinions on this, but personally I look back at the decades of playing nice with our abusers and the people who kept promoting or defending them as a loss but something we did not have an option, the ugliest discrimination was simply too popular and easy. But things have changed. It's time to go on the attack, or at least to push back on open displays of abuse and mockery, and especially of denial. Professionals shouldn't be denying basic facts, it makes a mockery of the idea of expertise.

All viewpoints are valid here, IMO. But I don't think we're getting anywhere being nice, or at least being too nice. We'll just get millions more buried alive with us. Until it is shameful to bully sick people, until the last acceptable form of bigotry, against sick people, is no longer tolerated, we will only get failure and bullying. It's a tradition that goes back too long to change without making good trouble.

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I'm not in good shape right now to write letters, but once I'm better, I will. I'm a patient at UCSF for something else entirely, and maybe as a current patient expressing my disgust at a UCSF faculty member/physician espousing such views will, I dunno, make somebody at least take notice for a few seconds?
 
Long COVID Treatment Research Is Stuck in a Frustrating Catch-22
Shaney Wright, a safety and risk management professional who has been suffering from long COVID for three years, doesn’t hide his frustration about the fact that there are no proven therapies for his condition.

“Long COVID is a vile disease that affects every bodily system. It affects your ability to live, eat, sleep, and work,” he said. “Many people have been struggling for two to three years, with no end in sight. Finding treatments makes humanitarian and economic sense. The lack of urgency is profoundly unethical and irrational.”

Like many people with debilitating long-term symptoms, Wright, now 32, was young and healthy when he got COVID-19 in April 2020. Since then, he’s experienced issues ranging from a racing heart and low blood pressure to constant tinnitus, dizziness, and shortness of breath.

A growing body of evidence shows that SARS-CoV-2 can lead to more than 200 post-acute symptoms, leaving some patients so disabled they can barely leave their beds. The prevalence of long COVID remains unclear, with the World Health Organization definition encompassing anyone who has symptoms like fatigue or shortness of breath after three months. But even if the fraction of people with persistent illness is small, that still could add up to millions of Americans—more than the 1.2 million people living with HIV.

Scientists don’t know why some patients with COVID fail to get better, though a number of avenues are being explored. The clues they have suggest that patients would likely benefit from pharmaceutical therapies, but without a known mechanism or definitive diagnostics, government agencies and pharmaceutical companies seem reluctant to develop and test treatments. That leaves patients like Wright in a terrible lurch.

“We’ve been knocking on the doors of every company. They say, ‘Interesting idea—come back to us when you know how to measure long COVID,’ ” said Steven Deeks, a professor of medicine at the University of California, San Francisco, and one of the world’s leading HIV-cure researchers. “We desperately need tests to provide a way to diagnose and manage the syndrome.”

A major government effort to bridge the gap seems to have stalled out. In February 2021, the National Institutes of Health launched RECOVER, a $1.15 billion effort to better understand long COVID and test treatments. But two years later, with the funding mostly used up, the initiative has yet to enroll a single patient in treatment trials, according to a recent STAT and MuckRock investigation.

The delay, patient advocates charge, has wasted time, resources, and patient goodwill. Although advocates demanded—and have gotten—seats at the table, many feel RECOVER decision-makers aren’t really listening. Some are especially incensed about a plan to rehash studies of exercise, which patients with myalgic encephalomyelitis/chronic fatigue syndrome, also known as ME/CFS—a related condition also thought to arise from viral infection—say can make their condition worse.

“For people who have been profoundly ill for years, it’s devastating to learn that RECOVER hasn’t launched any treatment trials yet. We have no time to lose by wasting money on debunked and even dangerous interventions,” said JD Davids, a longtime AIDS activist and co-founder of Long COVID Justice. Long COVID can be disabling, he added, and according to the Centers for Disease Control and Prevention, it’s already played a part in more than 3,000 deaths.
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full article
https://slate.com/technology/2023/05/long-covid-treatments-where-research-recover.html

More discussion of RECOVER here:
https://www.s4me.info/threads/usa-t...ng-and-series-of-research-videos.30525/page-4
 
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It seems likely to me that the best treatment for Long Covid is not to get Covid at all or to treat Covid when people have it. I won't go into "don't get Covid at all".

There are no treatments for acute Covid (for the general public not needing hospitalisation) that I'm aware of, but if there were some, and people could buy them before they became ill then it could shorten the course of the disease if they develop it, and thus reduce the risk of Long Covid.

I'm sure the reason for there being no treatments for acute covid for the general public to have easy access to is so that as many people as possible could be coerced into having vaccines.
 
Haven't heard it myself yet, but saw on Twitter that Avindra Nath has talked about Covid-19 and brain fog in a podcast

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Back in 2020 they had an episode on ME which doesn't seem good, but haven't given it a listen:

"Chronic Fatigue Syndrome: The Disease No Doctor Wants to See".
Episode description: Dr. Jacob Teitelbaum, a leading expert on Chronic Fatigue Syndrome, and the author of From Fatigue to Fantastic, shares his insight on how to overcome this complicated disease.
 
Kalliope said:
Haven't heard it myself yet, but saw on Twitter that Avindra Nath has talked about Covid-19 and brain fog in a podcast



Back in 2020 they had an episode on ME which doesn't seem good, but haven't given it a listen:

"Chronic Fatigue Syndrome: The Disease No Doctor Wants to See".
Episode description: Dr. Jacob Teitelbaum, a leading expert on Chronic Fatigue Syndrome, and the author of From Fatigue to Fantastic, shares his insight on how to overcome this complicated disease.
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I haven’t read “From Fatigued to Fantastic,” but if there was a book outlining how to overcome the disease, I’m certain the erudite members of this forum would be analyzing it. Also, using the terminology “overcome” implies that those still ill just lack a certain gumption
 
Charles B. said:
I haven’t read “From Fatigued to Fantastic,” but if there was a book outlining how to overcome the disease, I’m certain the erudite members of this forum would be analyzing it. Also, using the terminology “overcome” implies that those still ill just lack a certain gumption
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I'm listening to the podcast now. Avindra Nath is very interesting as always, not so sure about the podcaster who is also a doctor. The podcaster says he works a lot with chronic fatigue and says he has been cooperating with Bruce Patterson (from IncellDx which claimed to have a cure for long covid earlier in the pandemic).

The author behind "From Fatigued to Fantastic" attended a UK seminar in 2020 titled Fatigue Super Conference where also Sarah Myhill spoke. Thread here
 
Medscape: Clinical Trials: Top Priority for Long COVID by Hannah Davis

quote:
This article aims to share key considerations and best practices that are essential to the success of these trials. These recommendations recognize that roughly half of long COVID patients have new-onset myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia from COVID, which must be at the forefront of how trials are designed and conducted, and are additionally based on the current hypotheses about Long Covid's pathophysiologies.


https://www.medscape.com/viewarticle/991762
 
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https://www.mirror.co.uk/news/health/devastating-toll-long-covid-revealed-29949418
 

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Here's the online version:

UK’s first Long Covid clinic treating Brits left needing specialist care
https://www.mirror.co.uk/news/health/devastating-toll-long-covid-revealed-29949418
The Mirror today gives a shocking insight into how Long Covid is devastating the lives of sufferers.

We had access to the UK’s first clinic for the condition hitting two million Brits, with 400,000 in need of specialist care.

One sufferer said: “Covid is not over for me. It has completely changed my life.”

Figures show there are around two million people suffering a range of ailments from severe fatigue to brain fog. Many have stopped work as even standing up leaves them gasping for breath.
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