Long Covid in the media and social media 2022

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The Lancet Reg Health-Europe said:
#LongCovid symptoms are often debilitating enough to leave patients unable to work & are similar to those of chronic fatigue syndrome & those triggered after infections with Ebola virus, poliovirus, Lyme Disease & even SARS-CoV, which fall under 'post-acute infection syndrome'
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It's a Lancet subsidiary. There is an attention to details that is rare to see. Just the proper use of the hashtag #LongCovid is rare from official sources.

If they are serious about this, though, they will need to escalate within the organization to address Horton's and the board bizarre antics to keep the PACE trial published, mirroring exactly what happened with the MMR paper. Nothing is likely to happen until this historical blunder, a repeat of one of the most famous ones, is dealt with accordingly.

However this can only done by assigning blame. Career-ending blame for many. Medicine has so far never shown the ability to do this, ranks always close in to protect reputations.
 
Reportedly, this is what they're pushing at the Nuffield NHS program. The same old mindless debunked nonsense.

All the claims are fully generic and have nothing to do with LC, other than the blatant and obvious lie that it's proven to speed up the recovery process. This is a complete lie, full stop.

Those other things are all vaguely and generically true for healthy people. But fully generic medicine is really the same as no medicine, there is nothing professional grade about this, it's basically the same as those programs that tell people to visualize their success and becoming wealthy as the way to achieve it, and that only you can make those thoughts successful. All they need to do is increase their income. Easy peasy, already done by the mere fact of thinking it.

Might as well tell people to drink water. There are benefits to drinking water. Such as not dying and not being thirsty or dehydrated. And yet this is not relevant here, because this is not the problem. It's really as if medicine has basically stopped caring about whether a solution is actually relevant to the problem, that applying a generic solution is good enough. No one seems to care anyway.

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Well, this is awkward. After 2.5 years of hearing "we're not seeing it in our clinics" it turns out they were seeing it, just took a very long time to notice. While being warned about it the whole time and insisting otherwise. And repeating the same old pattern with LC in neurology being the most awful discipline to deal with. Change is badly needed.

It's going to be very difficult moving forward with the FND fanatics in the discipline, who are clearly gearing up to grab it all. I have little confidence in neurology, I just really hope they surprise us by doing a complete reversal on decades of willful negligence, but this is extremely slow-going while the quacks move easily and quickly, they don't even have to show anything.

So, neurology, welcome to half a century ago. You missed out on a lot.


VIDEO: Long COVID ‘predominantly affects the nervous system’
https://www.healio.com/news/neurolo...ovid-predominantly-affects-the-nervous-system

Igor J. Koralnik, MD, discusses highlights from his presentation at the 2022 American Neurological Association’s annual meeting on long COVID and its effect on the nervous system.

“We saw that neurology was the most frequently visited clinic — ahead of pulmonology and cardiology — showing that as much as COVID-19 is a respiratory disease, long COVID is really, predominantly affecting the nervous system,” Koralnik, chief of neuroinfectious diseases and global neurology and professor of neurology at Northwestern Medicine Feinberg School of Medicine, said.​
 
Hey, it's not like Fauci literally had decades to do this. Then about 2 years when it started, then grew constantly. Time during which he said things, but did nothing. I doubt he's much involved at NIH anymore so it's probably out of his hands but until the discussion turns inwards, is willing to look at how this failed, why this failed, and what needs to change in order to end the paralysis, all this talk is just talk for talk's sake.

Fauci still has enormous influence right now. He could set this straight if he chose to. He still can't, making this talk as cheap as it gets. Urgency means something. Words have meaning. And yet this is all talk with no intent to act. As non-urgent as it gets, still with the "won't somebody do something, give us the answers we so desperately need and without which we systematically refuse to act?", when getting those answers is a process, not an outcome.
"“#LongCovid is a profound urgency” — Dr. Fauci on @ChrisCuomo https://t.co/lIOfymX2Ji
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Edit:
Chris Cuomo said:
Not urgent enough to make it a real priority and message the reality to us regularly. That's why I cover it. I have it. I hear abt it all the time. And I bet if more got the reality there would be less fighting abt how to prevent covid
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Long Covid sufferers still sick a year after initial infection

The first Irish study of long Covid symptoms has found almost half of people affected have memory problems and 17% have thought about harming themselves.

The study found that people with long Covid had as many as 33 symptoms, with the median being eight. Some were sick for up to 20 months and the median was one year.

Symptoms also include sexual dysfunction (13%) and tinnitus (38%), with more than two in three reporting fatigue, stomach upset, heart palpitations, and muscle pain, among other symptoms. Just 9% of long Covid sufferers were hospitalised when they first had the virus.

The study, ‘Impact of long Covid on health and quality of life’, for which 988 people were surveyed, was conducted by Cork University Hospital (CUH), APC Microbiome Ireland at University College Cork, and Long Covid Advocacy Ireland.

https://www.irishexaminer.com/news/arid-41000348.html
 
Updated long Covid resource launched for community nurses

The Queen’s Nursing Institute (QNI) has published an updated resource for community nurses caring for patients with long Covid.

The updated resource has replaced a previous version that was commissioned by NHS England and NHS Improvement and published by the QNI in December 2020, when long Covid was emerging as a serious consequence of the pandemic, but was still poorly understood.

The updated QNI resource highlighted that long Covid is best considered as a multi-systemic condition and that nurses will need access to a multi-disciplinary team to ensure patients with the condition are getting the right support.

Dr Alison Twycross, nurse academic and founder of the group Long Covid Nurses and Midwives UK, welcomed the new guidance, and particularly its inclusion of children and young people and how it highlighted the role of nurses in assessing those with the condition and signposting them.

However, she was “disappointed” that the aspect of long Covid the resource focused on "first" was mental health.

“While this may not have been intentional, it feeds into the perception among some parts of the health service that long Covid is primarily psychosomatic rather than mental health issues being caused by having an illness that severely impacts everyday life,” said Dr Twycross, who has had long Covid since 2020.

She stressed that guidance documents should also focus more so on addressing underlying causes of symptoms, rather than just on wellbeing and learning to live with it.

The updated QNI resource, titled Living with Long Covid A Community and Primary Care Nursing Resource was launched at the QNI’s annual conference in October.

https://www.nursingtimes.net/news/c...rce-launched-for-community-nurses-07-11-2022/

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UK - Long Covid guide for community nurses
 
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John Mac said:
Long Covid sufferers still sick a year after initial infection

The first Irish study of long Covid symptoms has found almost half of people affected have memory problems and 17% have thought about harming themselves.

The study found that people with long Covid had as many as 33 symptoms, with the median being eight. Some were sick for up to 20 months and the median was one year.

Symptoms also include sexual dysfunction (13%) and tinnitus (38%), with more than two in three reporting fatigue, stomach upset, heart palpitations, and muscle pain, among other symptoms. Just 9% of long Covid sufferers were hospitalised when they first had the virus.

The study, ‘Impact of long Covid on health and quality of life’, for which 988 people were surveyed, was conducted by Cork University Hospital (CUH), APC Microbiome Ireland at University College Cork, and Long Covid Advocacy Ireland.

https://www.irishexaminer.com/news/arid-41000348.html
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Oh, did the Potemkin clinics with BS pseudoscience treatments that don't work not do the trick?

How about, pseudoscience but, like, 2x over? Surely that ought to be twice as zero.

This is basically like trying to deal with an incoming asteroid with prayers and magic spells, maybe some dancing. Come to think of it, I'm not even sure we'd even manage that much. We can't even manage easy mode problems.
 
Mij said:
Are you aware that Jeff Wise wrote a book about the mechanisms of fear in the mind, and how different parts of our brains react? He looked into the neurology and the psychology of fear situation. Not surprising that his views on fear of exercise and PEM are part of his narrative.

He said he spoke to ME/CFS specialists for his article. Who were they? Ashok Gupta? The guy who started the Amygdala Retraining Recovery Programme?

Jeff Wise Book:
Extreme Fear, The Science of Your Mind in Danger.
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Well, surely he had no preconceived notions going in!

His response to legitimate criticism of his article will undoubtedly be to claim he is under-attack and being harassed.

We should have the NIH apology for that made up claim by a BPS researchers show up where the Newspaper is made up (can't find atm) on stand by for these guys.
 
We’re in the hydroxychloroquine era of long COVID

In March 2020, in the embryonic days of the pandemic-that-would-change-everything, then-US president Donald Trump took to the stage to introduce the world to a “game changing” new drug: hydroxychloroquine.

There was no evidence the drug worked to treat COVID-19, his exasperated chief medical advisor Anthony Fauci was forced to note. But Trump said he had a “good feeling about it”. After all, “if things don’t go as planned, it’s not going to kill anybody”. (He was wrong.)

Hype, hopelessness, misinformation, madness. It seems a lifetime ago, doesn’t it? Yet for millions who suffer from long COVID, that time has never ended.

We don’t fully understand what causes the debilitating condition and we don’t know how to treat it. Patients have taken to testing treatments on themselves and sharing the results online.

“We’re at the hydroxychloroquine stage with long COVID – the stage where people come up with unproven and crazy ideas,” Professor Steven Faux, co-lead of the long COVID clinic at Sydney’s St Vincent’s Hospital, tells me. It’s a sign of the times, I suspect, that many patients are gravitating to ivermectin.

But doctors can’t offer their patients nothing while they wait for trials to be done. So, many clinics are using a treatment already deeply controversial in the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) community: graded exercise therapy.

Believe the patients?

Graded exercise therapy involves slowly building a person’s strength through movement. It was prescribed for people with ME/CFS based on the theory that their muscles had become “deconditioned” after long periods of rest, and that when patients started moving again, they misinterpreted normal pains as symptoms of the disease.

In 2011, the Lancet published a large randomised trial of treatments for ME/CFS, including graded exercise therapy. The study concluded the treatment was moderately better than standard care. An earlier Cochrane review (that did not include the Lancet study) came to a similar conclusion.

But here’s the thing: many people with ME/CFS are deeply critical of graded exercise therapy, for two reasons.

First, a proportion have post-exertional malaise: being forced to exercise can leave them bedridden for days. Second, there’s a sense the therapy is based on the idea that their condition is not real.

“When they are forced by their doctor to do graded exercise therapy, they get worse – they crash,” says Anne Wilson, CEO of ME/CFS advocacy organisation Emerge Australia. “Doctors and clinicians say they know better. Why believe the patients?

“You’re being told when you get more physically fit your ME/CFS symptoms will improve. Bullshit.”

The Lancet study became controversial almost as soon as it hit the internet. Patients, organisations and experts shredded it in open letters. Freedom of information applications were filed.

Perhaps the most damning criticism I have seen is that the scientists changed the measures they were using to decide if a patient had “recovered”, after the trial had started. In general, this is a big no-no because it can allow researchers to manipulate a study to get the result they wanted. (The researchers offer a defence here.)

When independent scientists reanalysed the Lancet’s data using the original outcome measures, any effect from graded exercise therapy disappeared. Worse, when other scientists asked to see the raw data from the Lancet study, they were basically told to go away.

https://www.smh.com.au/national/we-...oquine-era-of-long-covid-20221108-p5bwcu.html




 
A smart and balanced article. The title was ambiguous, but fear not. They're not comparing patient advocates to non-doctors pushing hydroxychloroquine--they're comparing people pushing GET to it, because it's unproven in long Covid. The gist of the article is that PACE was pretty bad, and that exercise therapy doesn't seem safe or effective in pwLC with PEM, but might help those without it (though evidence for the latter is lacking).

One point of feedback is this. The term "graded exercise therapy" probably shouldn't be used for forms of exercise therapy that don't presume a patient's symptoms are mostly caused by deconditioning and that the patient is afraid of exercising. Exercise therapy in people without PEM, as a way to manage symptoms, is legitimate rehabilitation, but the jury's still out if it works for PwLC. If physios do it, they need to screen very carefully for PEM.
 
John Mac said:
First, a proportion have post-exertional malaise: being forced to exercise can leave them bedridden for days. Second, there’s a sense the therapy is based on the idea that their condition is not real.
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First of all, that's not a "sense" or a "feeling", it's the literal argument. ME is not taken seriously at all, on the basis of a BS model. This is a simple fact. If it makes physicians sad because it makes them look bad, the solution to this is entirely in their hands, we cannot help them deal with problems they created and self-perpetuate. If there's ever a place to tell someone to suck it up and have some self-efficacy, this is it.

But the main issue over GET is that it's nonsense: ME is clearly not deconditioning, deconditioning doesn't work like that, doesn't highly fluctuate, doesn't happen suddenly, especially when it's always framed as "after extensive bed rest", which is clearly and blatantly false in the vast majority of cases. The absurdity of physicians telling people who are in far better physical condition than them that they are either unfit or too stupid to figure out how to exercise on their own, sometimes said to athletes and professional trainers, is a giant red flag that things are very dysfunctional in there.

It should be self-evident that applying the solution to a different problem doesn't work when the real problem is something else entirely. Or even if it were close, solutions have to match the problem and they have to fit the facts. Here none of the conditions laid out are true in the vast majority of cases, invalidating the entire premise. It also literally violates the linear passage of time, which I long for the day medicine will actually respect.

No other reasons are needed beyond that. Exercise is not the solution to this problem anymore than drinking water is a treatment for diabetes, even though it often features excessive thirst. The bare minimum expected of scientists and experts is to respect the conditions they set for an explanation, that they genuinely do not care about blatant self-contradiction is terrifying for what it means about how common this practice is.

As for the fear of exercise (or of standing), this is basically ridicule and should not even need to be addressed. And yet it does, because clearly medicine has a very irrational view of what fear means and how absurd those claims are, shows zero respect for our intelligence, or the public's, see nothing wrong with blatant lies and mythology.
 
Hi everyone, announcing that we are changing the name of the newsletter from the 'Long Covid Weekly' to the 'Long Covid & ME/CFS Weekly'
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Generally speaking, I am seeing less interest and reporting on LC but also more openness to working it all out together. Even though evidence is confirming how it's actually worse. Healthcare truly and mostly is political in the end. It's not a discipline where science can simply overrule debate because the math works. There's no math here, it takes skill and this kind of skill simply never made its way into the profession.
 
Interesting survey on vaccination outcomes in Long Covid (how vaccines affected pwLC). There have been a few already and it's consistent with them overall, but far more in-depth in terms of details, continuing the trend of amateur research (though from an expert) being far better than almost all expert studies simply because knowing what questions to ask is the most important part of science.
LongCovidPharmD on Twitter said:
‼️SURVEY UPDATE‼️ How has COVID-19 vaccination affected your #LongCovid symptoms? With 654 responses to this question so far: 52% no change (or fleeting changes ≤ 1 wk of vaccine) 28% worsened❌ 17% improved✅ 3% a mix How long did benefits or relapses last? See next tweet⬇️ https://t.co/cu5KKwcWVT
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Long COVID Patients Find Aid and Risk in Online Support Groups
Nov. 9, 2022 -- Jill Sylte wrote that she would not have made it through long COVID without her Facebook support group, Survivor Corps.

“It has helped me so much, by being able to be in touch with other long hauler members,” the Pensacola, FL, woman wrote in a comment on a group post in March. “Everyone in this group understands each other. Unless you are a long-hauler you don't completely feel what we are going through.”

The listing of hundreds of Facebook long COVID communities goes on for page after page. Some have a few members. Survivor Corps has nearly 200,000.

“This space has absolutely exploded in the past 2 years,” says Fiona Lowenstein, a journalist who started the group called Body Politic that has become a COVID support group.

The public Facebook COVID and long COVID groups are studded with posts and comments like this among the hundreds that can come in a day.

On a single day in late October, Survivor Corps posters were trying to find out if anyone else had hair loss, rashes, sleep apnea issues, migraines, bladder problems, neck pain, vertigo, allergies, or double vision. An October post on increasing cholesterol levels drew more than 50 comments within 17 hours.

The support groups provide advice and encouragement that patients often are not getting from their medical providers, friends, and family. They're also a source of valuable data for researchers. But some doctors worry that they are not always entirely benign, even as they gain popularity.
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After having lived with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for years, long COVID seemed familiar to JD Davids, a chronic disabilities activist in Brooklyn who works with a group called Long COVID Justice. He thinks patient groups are important for otherwise healthy people with unexplained post-infection symptoms like extreme fatigue.

“One of the problems is that these often-volunteer-based patient support groups are all that people have,” Davids says. The groups are essential to patients but need to be part of a comprehensive care plan, he says.
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full article
https://www.webmd.com/lung/news/202...ts-find-aid-and-risk-in-online-support-groups
 
After having lived with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for years, long COVID seemed familiar to JD Davids, a chronic disabilities activist in Brooklyn who works with a group called Long COVID Justice. He thinks patient groups are important for otherwise healthy people with unexplained post-infection symptoms like extreme fatigue.
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I'd recommend against referring to people with long Covid as "otherwise healthy". "Previously healthy" or "without comorbidities" would be more in-line with how other conditions are discussed. It somewhat connotes that the illness either isn't real or isn't serious.

"Besides having schizophrenia, she's otherwise healthy" or "There are so many otherwise healthy people dropping dead from cancer" doesn't have the right ring to it. Such language only feels right in the context of mild conditions. "I'm not sure what's wrong. He has well-controlled hypertension, but otherwise he's healthy."
 
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