News about Long Covid including its relationship to ME/CFS 2020 to 2021

[Jonathan Edwards]

Piece in the Guardian today about LongCovid quoting Charles Shepherd. Nothing very new.

 

[Blueskytoo]

New Guardian article out today. I feel so desperately sorry for these people, it’s so hard to be so sick with something and have no one willing or able to help you ,apart from us MEers, of course, who have “been there, done that, got the t-shirt” ...I hope they start to get some support and help sooner rather than later.
https://www.theguardian.com/world/2...ths-on-im-still-unwell?CMP=Share_iOSApp_Other

 

[PhysiosforME]

This is so incredibly bad for the credibility of medicine and science. They come out with the worst possible advice, which most of the COVID patient population see through based on their experience, then also see that the ME community clearly know much more about this. It's absolutely not even close to be normal for a stigmatized patient community to GENUINELY know more about actual medical authorities. This isn't hypothetical, it's what's actually happening. Medical authorities are saying the worst possible nonsense while the weird stigmatized people have actual useful advice.

This will have very serious impacts on vaccination and disease control and prevention, will be used to beat people over the head about how modern medicine is clueless: "just look at the horrible advice they were telling the Long Covids, patients clearly know what's best", which isn't always true, this is a special case, but it looks extremely bad that it happens to be true about something very close to the need to vaccinate everyone ASAP once, if, we manage to develop one.

This should spring massive quick action. If only anyone working at medical institutions were actually paying attention anyway. Denial has consequences. Incompetence has consequences. There is still time to stop this but holy crap act quickly and massively, unroot the whole thing and salt the earth where it stood.

The advice clearly looks to be standard pneumonia rehab, not accounting for post-viral illness. It's important to be able to tell when advice applies or not, it's also important to be able to categorized things and tell different things apart. This is very bad.

We did manage to get the CSP to add a section on PVFS https://www.csp.org.uk/public-patient/covid-19-road-recovery to this page (and to remove the quote in massive letters about the importance of exercise) but sadly the Norwegian crew seem to have ignored that bit!

 

[Andy]

Care Dependency in Non-Hospitalized Patients with COVID-19

Background: A large sample of “mild” COVID-19 patients still experience multiple symptoms months after being infected. These persistent symptoms are associated with many clinically relevant outcomes, including poor health status and impaired functional status. To date, no information is available about care dependency. Therefore, we aimed to explore the level of care dependency and the need for assistance with personal care in non-hospitalized COVID-19 patients.

Methods: Members of two Facebook groups for COVID-19 patients with persistent complaints in The Netherlands and Belgium, and from a panel of people who registered at a website of the Lung Foundation Netherlands, were assessed for demographics, pre-existing comorbidities, health status, and symptoms. In addition, patients were asked about their dependence on others for personal care before and after the infection. The level of care dependency was assessed with the Care Dependency Scale (CDS) in members of the Belgian Facebook group (n = 210). Results: The data of 1837 non-hospitalized patients (86% women; median (IQR) age: 47 (38–54)) were analyzed. Only a small proportion of patients needed help with personal care before COVID-19, but the care need increased significantly after the infection (on average 79 ± 17 days after the onset of symptoms; 7.7% versus 52.4%, respectively; p < 0.05). The patients had a median (IQR) CDS score of 72 (67–75) points, and 31% of the patients were considered as care-dependent (CDS score ≤ 68 points).

Conclusions: COVID-19 has an important impact on care dependency in non-hospitalized patients. About three months after the onset of symptoms, a considerable proportion of non-hospitalized patients were to some degree dependent on others for personal care. This indicates that the impact of COVID-19 on patients’ daily lives is tremendous, and more attention is needed to identify optimal treatment strategies to restore patients’ independency.

https://www.mdpi.com/2077-0383/9/9/2946/htm

 

[Dolphin]

Care Dependency in Non-Hospitalized Patients with COVID-19

https://www.mdpi.com/2077-0383/9/9/2946/htm

The data of 1837 non-hospitalized patients (86% women; median (IQR) age: 47 (38–54)) were analyzed.

The gender imbalance is interesting, given what is seen in ME/CFS

 

[Dx Revision Watch]

The gender imbalance is interesting, given what is seen in ME/CFS

Methods: Members of two Facebook groups for COVID-19 patients with persistent complaints in The Netherlands and Belgium, and from a panel of people who registered at a website of the Lung Foundation Netherlands, were assessed for demographics, pre-existing comorbidities, health status, and symptoms. In addition, patients were asked about their dependence on others for personal care before and after the infection.

Possibly women were over-represented in the Facebook groups.

 

[Trish]

Care Dependency in Non-Hospitalized Patients with COVID-19

https://www.mdpi.com/2077-0383/9/9/2946/htm

This indicates that the impact of COVID-19 on patients’ daily lives is tremendous, and more attention is needed to identify optimal treatment strategies to restore patients’ independency.

Good luck with that. We've been waiting decades and no optimal treatment found and no restoration of independency.

I see no reason for a research abstract to end on such an empty hopeful statement. Why do they do that?

 

[rvallee]

New Guardian article out today. I feel so desperately sorry for these people, it’s so hard to be so sick with something and have no one willing or able to help you ,apart from us MEers, of course, who have “been there, done that, got the t-shirt” ...I hope they start to get some support and help sooner rather than later.
https://www.theguardian.com/world/2...ths-on-im-still-unwell?CMP=Share_iOSApp_Other

That was pretty good. Ironic to be in the Guardian, which has enthusiastically participated in the campaign to malign ME.

“If I had known that I’d be this ill, I would have taken everything a lot more seriously back in March,” Russell said. “But all that we heard back then was that if you were infected and you were a young person, you’d most likely not have any symptoms at all. Or you’d be ill for a couple of weeks and that would be it.”

This is the threat that "illness without disease" poses. It blinds us to real threats while putting out entire edifices to fully artificial ones. This warning should have been loud and clear, instead everyone is confused about things they should have expected but were assured were imaginary. This is the disaster the psychosomatic ideology has caused: total failure.

“We’ve got this terrific emphasis at the moment on the idea that younger people will be OK and the main reason they shouldn’t go out is because they might infect their grannies,” said Charles Shepherd, medical adviser to the ME Association which supports people with myalgic encephalomyelitis or chronic fatigue syndrome. The association has seen substantial numbers of long-Covid patients turning to it for support.

If post-Covid fatigue and ME are linked, research may provide solutions to both conditions. It has been difficult to study ME since most people with the condition have lived with it for months – if a virus was involved, it has left little trace by the time researchers meet their patient.

“This is the first time you can follow people almost from day one. Researchers are building large cohorts, they have got blood samples, and they can follow patients almost from the point of infection to when they develop post-viral fatigue. We’ve never had the opportunity to do that before.”

Quacks and charlatans have for decades made decision to fail, for their own selfish purposes in the pursuit of a delusional ideology. They have imposed those choices on sick people who loudly rejected consent to being experimented upon, sick people who lost millions of life years. All for absolutely nothing but astrology-level quackery and a few thousand mediocre wastes of careers.

This should have been anticipated and health care systems should have been prepared. Instead they still can't even keep up with evidence that has been clear for decades. Zero doubt this is the worst failure of expertise in human history. No experts have ever failed worse than this all on their own. Disaster is usually when politicians don't listen to experts. Here we have the rare opposite. And we fucking told you so.

 

[rvallee]

Long-haulers and the lingering effects of COVID-19

https://www.tmc.edu/news/2020/09/long-haulers-and-the-lingering-effects-of-covid-19/

One day, after she tested negative, she ventured outside for a walk and some fresh air. One block and 10 minutes later, she felt her legs teeter beneath her. She struggled to take another step and had to sit down on her neighbor’s front lawn—crying from sheer exhaustion.

“It was terrible. I would walk a block or three blocks and I would just be completely depleted,” Hakim said. “I was completely destroyed. I would run out of gas. I didn’t have anything in me. It was like you worked out for four hours and your legs were shaky. I just couldn’t do anything.”

The fatigue, joint pain, brain fog and headaches had persisted for more than a month.

“We’re discovering more and more subacute and chronic complications of the infection, so it’s not just like the flu, where you get it for a few days and then you’re over it,” said Richard Robbins, M.D., chairman of the department of medicine at Houston Methodist Hospital.

Although this is technically true, many people got ME from H1N1 so all that saying this isn't the flu isn't very helpful.

To make matters worse, the spectrum of post-infection sequelae is seemingly endless. It’s a veritable mixed bag of symptoms, with people most commonly reporting cough, fever and shortness of breath. On top of fatigue, chills, sweats, body aches, headaches and difficulty concentrating, symptoms can appear in other parts of the body, including the brain, gastrointestinal tract, heart and skin.

The multidisciplinary recovery clinic will be dedicated specifically to long-haulers. Slated to open in early October, the clinic will be staffed with 35 subspecialists—including cardiologists, gastroenterologists, infectious disease specialists, rheumatologist and neurologists—to treat, track and study patients over several years.

I think this is the first time I have seen that "list of expertises involved" not naming psychologists and psychiatrists.

“Our job is to not just say, ‘OK, if you feel well, you’re fine,’” Robbins said. “We want to take people with even minimal symptoms and do formal follow-ups with biomarkers, imaging studies to see if we can predict or identify early people who might have some chronic problems with their kidneys, their livers, their brain, their heart, their lungs.”

What is clear, Nasir added, is that more work needs to be done.

“We have a superficial idea—but we don’t have an in-depth idea—of what recovery looks like,” he said.

For now, doctors encourage long-haulers to rest, recover and be patient.

Not everyone can be patient, though. As time drags on more people will face ruin. You have to act faster than this when it comes to information. Even if you can't provide services and treatments you have to integrate this into normal practice, most people can't simply take 1-2 years to recover without support. As in, probably 95% of people, at a minimum. Medicine has to start taking into account the outside world, the consequences that happen outside of clinics and hospitals. This thing where reality is not taken into account leads to very poor outcomes.

 

[rvallee]

Redefining Covid-19: Months after infection, patients report breathing difficulty, excessive fatigue

https://edition.cnn.com/2020/09/13/health/long-haul-covid-fatigue-breathing-wellness/index.html

Gahan, a clinical psychologist in Shrewsbury, United Kingdom, hasn't been able to return to work.

The disease causes what she calls "storms," disabling periods when she feels shortness of breath, numbness in her hands and feet and her heart rate shoots up from simple tasks. Even taking a shower is possible only during an occasional respite in symptoms.

"In May and June, I could barely talk because I was so ill," she said.

She is one of thousands around the world for whom Covid-19 has turned into a chronic condition. Gahan and other Covid-19 "long haulers" feel they aren't yet getting recognition for an illness that has disabled them for months, with no end in sight.
"I'm a clinical psychologist, and this is not anxiety," she said. "If doctors just say 'We don't know,' it's better than saying Covid symptoms only last two weeks."

Here's the thing, though, there is at least a 90% chance that had she seen herself as a patient a year ago, she would have very likely "diagnosed" anxiety here. And I'm being very generous with 90%. This is a failing, an active one that needs to be rooted out. This thing relies on magical powers that simply don't exist, we do not have the means to either confirm or falsify a diagnosis of anxiety, it's just not a thing. We can only say that from actually living it, which medicine refuses because it considers patient input suspect.

Despite these symptoms, however, 104 of the 110 patients in the study had normal basic blood test results, with just 12% showing an abnormal chest X-ray and 10% showing restrictive lung function through spirometry tests.

The primary trend across the Covid-19 long haulers that Greenspan is working with is a condition called dysautonomia, a condition marked by a miscommunication between the autonomic nervous system and the rest of the body.

While shortness of breath and cardiovascular problems do present in his patients, Greenspan said, these are not usually the most common underlying cause of their misery.
Gahan and others with long-haul Covid-19 symptoms face a condition called postural orthostatic tachycardia syndrome, which refers to a sharp rise in heart rate that occurs when moving from a reclining to standing position. The pull of gravity causes blood to pool in the legs. This condition can cause dizziness, lightheadedness and fainting.

Many patients are exhibiting neurological symptoms consistent with myalgic encephalomyelitis/chronic fatigue syndrome, according to the BMJ and National Institute of Allergy and Infectious Diseases Director Dr. Anthony Fauci. That diagnosis requires at least six months of symptoms, a benchmark most long haulers haven't yet reached.

How about we end that arbitrary threshold? It never made sense and it's clearly unnecessary. Why do something wrong just because we've been doing it this way?

Corey Coopersmith, a 36-year-old fitness consultant in Las Vegas, hasn't been able to work since first getting sick in late February. He suffers a constant ebb and flow of symptoms, and yet visit after visit to medical specialists has turned out a series of "normal" lab tests.

"A month ago, I had a pulmonary exam, and I got 120% on the gas exchange test," Coopersmith said, noting the doctor told him, "Your lung function is amazing."

But a breakthrough came when he finally visited an immunologist who performed tests that indicated abnormally low function of immune cells, including T cells and B cells.

"Have you been tested for HIV?" the immunologist asked Coopersmith, he recalled. "Your blood work looks like someone about to get AIDS."

Her main issue has been pinpointing what has been causing the storms of illness, which are primarily neurological symptoms, including migraines and numbness in her feet and hands. She feels they can be explained by dysautonomia.

"I can't do anything except to just go to bed," she said, noting how lights and sounds and emotional stressors exacerbate her ongoing sickness. "I can't stand any interaction."

"It's not about fatigue. It's about really nasty symptoms that take over your whole life for who knows how long," Gahan said. "Think about people like me when you're thinking about what decisions you should make."

I'll just repeat this last one for the slow people at the back of the class:

"It's not about fatigue. It's about really nasty symptoms that take over your whole life for who knows how long," Gahan said. "Think about people like me when you're thinking about what decisions you should make."

 

[chrisb]

ON the question of the six months delay for diagnosis, I think the reason for that became clear with the 1979 Southampton outbreak. It was reported as ME but all but one of the children reported back for school at the beginning of the autumn term less than three months later, apparently all well. The one was found to have a differential diagnosis. There seems little to be gained from calling that ME.

 

[alex3619]

A thing about medicine is its often about diagnosis using overt objective symptoms, and sometimes biochemical signs that are validated in a small range of diseases. Physical lesions are often easy to see, and some kinds show up on X-rays. Yet biochemical lesions are a complete mystery. We still do not have the technology to reliably see them, though we are advancing rapidly. Heck, we could start a long debate on what I mean about biochemical lesions.

The sad thing about medicine is that when faced with complex issues they cannot measure they often defer to superstition. Hence the psychobabble.

This is not all doctors, or all of medicine, of course. We need those medical researchers who tease apart the complex biochemistry to find root causes for issues.

 

[Dolphin]

New Guardian article out today. I feel so desperately sorry for these people, it’s so hard to be so sick with something and have no one willing or able to help you ,apart from us MEers, of course, who have “been there, done that, got the t-shirt” ...I hope they start to get some support and help sooner rather than later.
https://www.theguardian.com/world/2...ths-on-im-still-unwell?CMP=Share_iOSApp_Other

About 600,000 people have some sort of post-Covid illness, according to Tim Spector, professor of genetic epidemiology at King’s College London, who says that around 12% of sufferers report symptoms to the Covid Tracker app for longer than 30 days. One in 200 says the effects last for more than 90 days.

1 in 200 is low.

 

[NelliePledge]

1 in 200 is low.

I wouldn’t know - is there information to compare this with other viruses

 

[alex3619]

I wouldn’t know - is there information to compare this with other viruses

The Dubbo study with EBV, Ross River virus (and I think Q-fever?) showed a range from 8-12%, or about 10%, for some time. 0.5% is indeed low. However I don't know that we have enough information to definitively answer why it is that low.

One possibility is that those who are post-Covid for more than three months are a distinct minority of the total, and so numbers will be low for now. Over time this would rise. 12% is however in the ballpark range of ongoing post viral issues, and historically some of those qualify for an ME diagnosis some months later. I am not sure what that figure is though, the research is obfuscated by use of varying CFS definitions in this research, not a definitive diagnostic entity.

 

[Perrier]

https://www.ctvnews.ca/health/coron...athing-difficulty-excessive-fatigue-1.5102886

 

[Kalliope]

 

[John Mac]

The lasting misery of coronavirus long-haulers
Months after infection with SARS-CoV-2, some people are still battling crushing fatigue, lung damage and other symptoms of ‘long COVID’.

And although in some cases the most severe infections also cause the worst long-term impacts, even mild cases can have life-changing effects — notably a lingering malaise similar to chronic fatigue syndrome.

.......


These symptoms resemble chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME). The medical profession has struggled for decades to define the disease — leading to a breakdown of trust with some patients. There are no known biomarkers, so it can only be diagnosed based on symptoms. Because the cause is not fully understood, it is unclear how to develop a treatment. Dismissive attitudes from doctors persist, according to some patients.

People reporting chronic fatigue after having COVID-19 describe similar difficulties. In the forums, many long-haulers say they have received little or no support from doctors — perhaps because many of them showed only mild symptoms, or none at all, and were never hospitalized or in danger of dying. It will not be easy to establish the links between COVID-19 and fatigue with certainty, says Randolph. Fatigue does not seem to be limited to severe cases. It is common in people who had mild symptoms and who therefore might not have been tested for the virus.

https://www.nature.com/articles/d41586-020-02598-6

 

[rvallee]

The lasting misery of coronavirus long-haulers
Months after infection with SARS-CoV-2, some people are still battling crushing fatigue, lung damage and other symptoms of ‘long COVID’.



https://www.nature.com/articles/d41586-020-02598-6

a breakdown of trust with some patients

Sure, and the massive wildfires in California are a mild inconvenience for some people. We don't know how reliable it is, but the best data we have is that this criminal negligence has caused one of the lowest quality of life level in all of medicine and about 1/4 deaths by suicide, amounting to close to 25 years of life expectancy lost.

A "breakdown of trust". Medicine is leaving us to waste away and die. The breakdown of trust happened decades ago, by now it's blatantly criminal neglect. The standard of care is literally gaslighting and lying to our faces.

Dismissive attitudes from doctors persist, according to some patients

"Persist", as in "are the universal norm". And not according to us, this is a basic fact, even one published in scientific literature. Just ask doctors what most think of us, holy crap is it insulting and cruel. Hell, one could even research that, but it would show that things aren't just a tad breakdowny and actually amount to criminal negligence, so much worse than this white-washed version attempts to minimize this massive failure.

Because the cause is not fully understood

If only there were some process by which we could take partially understood things and explain them fuller. Because that partial understanding of an infectious trigger by common pathogens is pretty clear by now and has nothing to do with the contrarian delusional fantasy model that is currently used in practice despite there being no evidence whatsoever and also happens to be not explained at all.

"Not fully understood" is not a valid reason to reject doing research for decades while millions beg for their lives, it literally is the opposite, it demands research. Which was categorically denied for decades. It is well-enough partially understood to take this seriously, the refusal of which has lead to something much more serious than a "breakdown of trust". By this standard there was also a bit of a "breakdown in trust" during the AIDS crisis. Just a tad bit, in the sense that there clearly are more than 100 grains of sand on a beach.

It really does not help with that whole trust thing to continue to blatantly lie and misrepresent not only what happened but is actually the current norm, almost universal in practice. Do better. Do 100x than this and stop insulting our intelligence and the memory of those we have lost, sacrificed to this insane dystopian nightmare of choice.

 

[rvallee]

I don't think the paper is compelling enough for its own thread, but a team did a thematic analysis of the Reddit Covid19Positive forum, as well as some Facebook groups. It's interesting but it really shows the issue with unasked questions, they had to make choices about what themes to factor in and completely missed exertion intolerance, which is one of the most common and discussed theme.

A good start, though, with a better neural network that does not require themes to be identified this will be very valuable. It's also notable that anxiety is a common theme but usually discussed negatively (the paper does discuss this, that it did not do sentiment analysis so it's a known weakness) in being dismissed by GPs as "it's just anxiety". Though not universally, it's still discussed prominently, but usually they are talking about autonomic symptoms and so it should be classified differently.


Social Listening as a Rapid Approach to Collectingand Analyzing COVID-19 Symptoms and Disease NaturalHistories Reported by Large Numbers of Individuals

https://www.liebertpub.com/doi/pdf/10.1089/pop.2020.0189

Given the severe and rapid impact of COVID-19, the pace of information sharing has been accelerated.However, traditional methods of disseminating and digesting medical information can be time-consuming and cumbersome. In a pilot study, the authors used social listening to quickly extract information from social media channels to explore what people with COVID-19 are talking about regarding symptoms and disease progression. The goal was to determine whether, by amplifying patient voices, new information could be identified that might have been missed through other sources. Two data sets from social media groups of people with or presumed to have COVID-19 were analyzed: a Facebook group poll, and conversation data from a Reddit group including detailed disease natural history-like posts. Content analysis and a customized analytics engine that incorporates machine learning and natural language processing were used to quickly identify symptoms mentioned. Key findings include more than 20 symptoms in the data sets that were not listed in online lists of symptoms from 4 respected medical information sources. The disease natural history-like posts revealed that people can experience symptoms for many weeks and that some symptoms change over time. This study demonstrates that social media can offer novel insights into patient experiences as a source of real-world data.This inductive research approach can quickly generate descriptive information that can be used to develop hypotheses and new research questions. Also, the method allows rapid assessments of large numbers of social media conversations that could be applied to monitor public health for emerging and rapidly spreading diseases such as COVID-19.