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It's briliant to see this sort of discussion going on between people who presumably have influence.
These are the exactly the sort of people we need onside. Patients can never force the change on our own, we don't have the political clout. It needs people with authority to force the issue at the senior levels of the profession.
It shows what we are up against. The opinion of a professor to whom a paper is sent for review are apparently ignored. Why, and by whom?
Right questions.
 
It shows what we are up against. The opinion of a professor to whom a paper is sent for review are apparently ignored. Why, and by whom? Presumably he must have been considered a "safe pair of hands".
The review stage involves the editor, reviewers and the authors. Does the BMJ now have open access review now? If so, the info may be out there. The authors most likely included it in their draft and didn’t want to remove it.
 
‘I’ve progressed very, very slowly’: B.C. COVID-19 ‘long-hauler’ shares recovery story

https://globalnews.ca/news/7319727/b-c-covid-long-hauler/

While the growth in new COVID-19 cases British Columbia continues to accelerate, the death toll has, mercifully, wound down to a trickle.

But what happens to the survivors? Many people recover completely, but there’s another group — known as COVID-19 “long-haulers” that are living with chronic symptoms months after tests reveal they’re virus-free.
“I’m probably at 50 per cent of my capacity to handle daily activities, stress,” Venderhoek told Global News, Sunday. “I don’t think I would be able to handle the demands of my work without keeling over.”
Vanderhoek, who describes herself as an athlete, was confirmed positive with the virus on May 1.

Her early symptoms included a sore throat, body aches and sniffles — but those escalated to exhaustion, intense headaches and trouble breathing.

“When I was diagnosed I thought, ‘If this is all it is, I’m physically fit, this is going to be great, I’m going to breeze through it,'” she said.
“But from that day forward the symptoms got progressively worse and every day was unpredictable as to what I was going to discover.”

While she was never hospitalized, she was bedridden for the better part of a month, finally testing negative for the virus at the end of May.

“I’ve progressed very, very slowly,” she said. “It’s been a whole new learning what my body can and cannot do.”
Intense chest pains continued until about mid-August.

Headaches, ear pain, sore throat and dizziness, she says, still come and go.

“The brain fog and brain fatigue was startling. I would forget words, I would do strange things, I would wander through the house I couldn’t remember where I was going, what I was doing.”
Back in Chilliwack, Vanderhoek said her experience as a long-hauler has left her with a message for others.

“I think there’s a bit of a delusion that it’s not going to get you until it gets you. And then your world changes,” she said.

“I have a whole new appreciation for people with chronic illnesses … you know, the way the medical system isn’t able really to fully help them.”

Has a few video interviews. At this point I'm really looking forward to reports moving away from single interviews with patients and building up on more data. I know everyone but us is slow at this but at this point they don't add much and continue to give the impression that cases are few enough that it's necessary to track down individuals, rather than reporting on the broader data.
 
For Long-Haulers, Covid-19 Takes a Toll on Mind as Well as Body

https://www.nytimes.com/2020/09/07/health/coronavirus-mental-health-long-hauler.html

Has some good bits but somehow they felt it necessary to talk with Jo "anyway, how's your shopping bag handling skill?" Daniels about how it's important to stay away from support groups, even though the article is mostly about how it's a lifeline for the community, how so many were on the verge of suicide and found strength in knowing they aren't alone. Go away Daniels, you are extremely bad at your job.

This is bordering on psychologizing but mostly because of Daniels' irrelevant comments. Otherwise it's certainly fair to think of the mental health consequences, although this article more than once somehow places fatigue as a mental health issue, which I can't even.

Forty hours after treating her first coronavirus patient, on March 30, Angela Aston came home to her family with a cough. “Gosh, your throat is scratchy,” her husband told her. Right away she knew she had likely been infected with Covid-19. As a nurse practitioner, Ms. Aston, 50, was confident she knew how to handle her symptoms, and disappeared to her bedroom to quarantine and rest.

By day 50 of her illness, that confidence had disappeared. In late May, she was still experiencing daily fevers and fatigue. She went to bed each evening worried that her breathing would deteriorate overnight. Particularly frustrating was the difficulty she felt explaining to her colleagues, friends and family that after eight weeks she was still sick.
Since then, she has gone to the emergency room a dozen times. In mid-April she rewrote her will. A persistent mental fog has made it difficult to put together sentences, she said, whereas before the pandemic she had functioned “like a walking thesaurus.” When she realized that could not return to teaching seventh and eighth grade English this autumn because of fatigue, she cried.

By the fourth month of her illness, Ms. Smith had contemplated taking her own life. “I said, ‘Who in the world would want to live like this?’” she said. “I wanted to jump out of my own body.”
“I felt this stigma like, ‘I’ve got this thing nobody wants to be around,’” Ms. Aston said. “It makes you depressed, anxious that it’s never going to go away. People would say to my husband, ‘She’s not better yet?’ They start to think you’re making it up.”

Ms. Aston found psychological comfort in an online support group, founded by the wellness organization Body Politic, where more than 7,000 people share their experiences as Covid-19 “long-haulers,” whose sicknesses have persisted for months.

Along with sharing their physical symptoms, many in the support group have opened up about how their mental health has suffered because of the disease. Dozens wrote that their months of illness have contributed to anxiety and depression, exacerbated by the difficulties of accessing medical services and disruptions to their work, social and exercise routines.
Ms. Smith is one of many long-haulers who, like Ms. Aston, said her mental health improved when she joined the online support groups Body Politic and Survivor Corps, where she exchanges tips for managing mental and physical symptoms. Members of these groups supported Ms. Smith in overcoming her thoughts of suicide, she said.
Although social media groups provide validation, there is also some risk. Groups that do not moderate their content can contribute to the spread of misinformation when users share unverified medical advice. (Survivor Corps requires people to link to trustworthy sources, and Body Politic deploys volunteers to moderate posts.) Support group members also sometimes inadvertently reinforce one another’s fears through detailed discussion of their own medical experiences, according to Jo Daniels, a psychologist at the University of Bath and an author of a recent study in the journal American Psychologist on Covid-19 and mental health.

Some long-haulers said that their doctors recommended limiting the time they spent on these groups daily so they could take in information without becoming overwhelmed.
That those paragraphs actually follow the one talking about how the support groups are a lifeline is seriously irresponsible. The absurdity of "mass hysteria" has to end, it's clearly a fully invalid belief system that has no place in modern science. Enough.
Many long-haulers said their mental health suffered when they faced skepticism about their symptoms from friends, family and even medical providers. Female long-haulers pointed to numerous studies showing that medical providers were more likely to underestimate women’s pain levels and misdiagnose their conditions. Ms. Smith said that in her first week of illness, her male doctor suggested she might have a sinus infection rather than Covid-19. Ms. Vázquez was told that her difficulty breathing could be a product of anxiety. Gina Assaf, a consultant in Washington, D.C., who helped write Body Politic’s report, said that by week six of her Covid-19 course, her doctor asked if her symptoms could be bad allergies.

“That felt like gaslighting,” Ms. Assaf said. Her friends were dubious of her lingering symptoms. “I stopped talking about it with a lot of my friends because it felt like they couldn’t understand.”
“My doctor said the most important thing is to completely de-stress,” said Jenna Bitar, 28, a New Yorker who contracted coronavirus and was placed on leave by her employer in March. “But how do I avoid stress when I don’t even know if I’ll be able to afford my medical bills? I don’t have a job.”
I'll file this under "most 'mental health' issues are actually socioeconomic". Despair is easily confused with anxiety and depression in the minds of people who disagree that the despair is a rational response to impossible circumstances.
Dr. Daniels, the University of Bath psychologist, said that researchers should study strategies for improving mental health, given the many people who turn to negative coping mechanisms like substance abuse.
No. You have clearly failed at this for decades. You are incapable of doing this and are out of your element. As Paul Garner said: ENOUGH FAFFING.
“I’ve had three OK days, but I’m hesitant to share that, because it could go away,” Ms. Smith said. “Long-haulers will tell you that. We preface every conversation when we feel good with, ‘I’ll regret saying this tomorrow.’”
 
No doubt Jo Daniels thinks what she has to say is intelligent and relevant and important.

It is none of those things. It's horrifying every time this woman is in print. So many people who've recently become ill with long-covid are coming forward and declaring how this is not at all as they imagined. And that's the problem. JD et al all think they know what it's about and what to do based on absolutely nothing but the conjuring of their own twisted minds.

Again, so many people realising that they had no idea what people with ME/cfs were on about and now they understand.

Take a hint JD and all the little minions that cling to this sickeningly abusive notion of being an expert while knowing less than nothing.
 
FWIW I just sent a request to the NYT for a correction of this sentence. "Immunologists speculate that long-haulers’ symptoms might persist because they harbor fragments of viral genes that are not infectious but that trigger violent immune reactions." I believe that Ron Davis' group has/had largely put this idea to rest. But even worse, the reporter should have quoted an actual immunologist!!!!!!!
 
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It is none of those things. It's horrifying every time this woman is in print. So many people who've recently become ill with long-covid are coming forward and declaring how this is not at all as they imagined. And that's the problem. JD et al all think they know what it's about and what to do based on absolutely nothing but the conjuring of their own twisted minds.
That's what happens when you break the feedback mechanism and cheat the process to turn failure into the appearance of success. All useful feedback gets removed and it becomes possible to fail miserably for decades while genuinely believing to be highly successful.

They did the equivalent of surrounding themselves with drooling sycophants even as they were falling deeper into absurd woo, with their claque dutifully applauding every misstep simply because a step, any step, must be applauded at all times.
 
Deconditioning and fitness level does not explain this phenomena.
I noticed in the mid 90s that my fatigue and energy moved separately quite a lot. I could have high energy and high fatigue (on protocols I was on back then), which included an increased capacity to walk long distances, I could also have high fatigue and low energy - the usual stuff. These symptoms moved separately for a long while. More usually they moved in tandem, so its easy to see how people get that idea, though its also possible we are talking different kinds of physical energy and fatigue states in combinations.

I have had "deconditioning" symptoms suddenly go away for hours or days, and return just as suddenly. No way that is regular deconditioning.
 
(referring to the BMJ letter)

Michael Peel, general practitioner

  1. Author affiliations
  1. mpeel@doctors.org.uk
In inner London, where we saw some of the earliest cases of covid-19 in the United Kingdom, we are now seeing patients with prolonged symptoms like those described by Salisbury, who were only mildly unwell at the time, if at all.1 There are not many, but they are of all ages. They remind me of patients I saw in the mid-1980s with tiredness and muscle pain on the slightest exertion, but more severe. The term the patients used was ME, which became chronic fatigue syndrome, which described their situation more accurately. Most of my patients learned to slow down, something that they found difficult, and to increase their exercise gradually. They almost all returned to living a normal life, though it took up to a year. They did much better than the patients I am seeing with the same label now.

What can we say today to our patients? That we do not know what will happen, but there is always hope. Take a medium term view. Trying to do too much too quickly is counterproductive. Ask, “Can I do more than I did two weeks ago?” because it will be slow. Michael Mayne wrote A Year Lost and Found in 1987, towards the end of his recovery, and it gives a good perspective. We can’t make promises, and none of us has a magic wand, but we can be there, and perhaps that’s the most important tool in primary care.
 
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Public Health England
Guidance: COVID-19: long-term health effects
Published 7 September 2o20

Persistent health problems reported following acute COVID-19 disease include:

  • respiratory symptoms and conditions such as chronic cough, shortness of breath, lung inflammation and fibrosis, and pulmonary vascular disease
  • cardiovascular symptoms and disease such as chest tightness, acute myocarditis and heart failure
  • protracted loss or change of smell and taste
  • mental health problems including depression, anxiety and cognitive difficulties
  • inflammatory disorders such as myalgia, multisystem inflammatory syndrome, Guillain-Barre syndrome, or neuralgic amyotrophy
  • gastrointestinal disturbance with diarrhoea
  • continuing headaches
  • fatigue, weakness and sleeplessness
  • liver and kidney dysfunction
  • clotting disorders and thrombosis
  • lymphadenopathy
  • skin rashes


https://www.gov.uk/government/publi...lqf4W3_2mpBe64ta2iweSt32WKHYP8WNV6k-K9-C8gqtI
 
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