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

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I posted an article on this above but might as well post the source. Not sure it requires its own thread since it's an update, not a formal paper.


Symptom Duration and Risk Factors for Delayed Return to Usual Health Among Outpatients with COVID-19 in a Multistate Health Care Systems Network — United States, March–June 2020

https://www.cdc.gov/mmwr/volumes/69/wr/mm6930e1.htm

Summary

What is already known about this topic?

Relatively little is known about the clinical course of COVID-19 and return to baseline health for persons with milder, outpatient illness.

What is added by this report?

In a multistate telephone survey of symptomatic adults who had a positive outpatient test result for SARS-CoV-2 infection, 35% had not returned to their usual state of health when interviewed 2–3 weeks after testing. Among persons aged 18–34 years with no chronic medical conditions, one in five had not returned to their usual state of health.

What are the implications for public health practice?

COVID-19 can result in prolonged illness, even among young adults without underlying chronic medical conditions. Effective public health messaging targeting these groups is warranted.
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Although as usual the problems of unasked questions:
Among the 274 symptomatic outpatients, the median number of symptoms was seven of 17 listed in the interview tool
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This obsession with believing that too many symptoms is inconvenient is not looking good here, really hampering good science.
 
There was a weird report on local news last night in French Canada. It featured two patients whose only symptoms was loss of smell. And that's it. It was specifically about "long-haul" and meant to warn about the fact that there is concern for more than deaths, especially with young people.

And although I don't doubt that it's not only problematic, possible to eat spoiled stuff by accident, but certainly demoralizing, it's really odd to focus only on loss of smell.

So that was weird.
 
A Doctor Who Specializes in Long-Term COVID-19 Effects Is Alarmed by What He Sees

https://nymag.com/intelligencer/amp...-the-alarm-on-long-term-covid-19-effects.html

For thousands of Americans, a coronavirus diagnosis was only the beginning. For months now, people who recovered from the initial illness have been experiencing a wide range of persistent symptoms: shortness of breath, weakness, brain fog, fatigue, depression. Countries hit hard by the pandemic in Europe have begun offering rehabilitation services to COVID-19 survivors, but the medical science community still knows very little about how the body recovers from the virus’ attacks on the lungs, gastrointestinal tract, heart, kidneys, liver, brain, and nervous system.
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That’s an interesting question. COVID is unique in that there are so many different body symptoms. I can’t really think of another illness that’s as traumatic. You have some autoimmune diseases that may be similar, but one thing that stands out is post-ICU syndrome. There are patients who suffer acute illness — they’re in the ICU for a very long time. From there, they’re discharged after they get better, and have residual symptoms for a long time because of the de-conditioning or possible super infections that happen in the ICU and also the effect of, say, sepsis or whatever illness that put them there. But we’re seeing this in patients who weren’t hospitalized.
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Hmmm. Doublethink.exe not responding.
I’m most concerned about how very little we know about the symptoms and the expectancy of how long they will last. If you look at the total cases, even if a small percentage have these post-COVID problems, we’re going to be in a lot of trouble. That would be an immense number of patients. Our health system cannot take care of that many people.
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Our health care systems are very adept at not taking care of many times more people facing the same. Decades of practice not taking care of us. The biggest challenge will come not only from starting this, but the realization that many times more people have already been failed, making the challenge even worse than it seems.
 
Welcome. I'm Dr Mark Donohoe, a registered Australian General Practitioner and Integrative Medicine doctor. I am a Sydney University graduate, and have worked in private practice for 34 years. I am a Fellow of the Australasian Society of Lifestyle Medicine (FASLM), a Fellow of the Australian College of Nutritional and Environmental Medicine (FACNEM) and have worked in the area of Environmental and Nutritional Medicine for over 33 years.
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http://www.mimpractice.com/drmark

I came across links to these blogs and podcasts in an ME/CFS patient organisation newsletter. I haven't read them or listened to them.

CORONAVIRUS UPDATE BLOG
May 30, 2020
This is my update of my April 14 coronavirus blog and podcast.

INTRO
A lot has changed, as you probably are all aware, and in the meantime some of the things that I wrote and talked about back then, I think have held up pretty well. But there are some corrections and some additions and some subtleties that have emerged and some of these will be of interest to my patients with chronic fatigue syndrome, with immune activation, Epstein-Barr virus and other types of problems that may put them in harm’s way.
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http://www.mimpractice.com/blog/2020/5/30/coronavirus-update-blog

DR MARK'S CORONAVIRUS UPDATE 25 MAY 2020
There's a lot that's happened in the world of the coronavirus since the last time I wrote six weeks ago about COVID-19 issues for people with chronic fatigue syndrome.

In this episode I take further look at the research and what it means for CFS suffers and what we can do to stay on our toes to make sure that we don't suffer the cytokinine storms and the other consequences
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http://www.mimpractice.com/podcast/2020/5/26/dr-marks-coronavirus-update-25-may-2020

CORONAVIRUS ISSUES IN CHRONIC FATIGUE SYNDROME
April 14, 2020


This is a reading of my blog on the SARS-CoV-2 virus and the COVID-19 risks and suggestions for my patients, mainly for those with chronic fatigue syndrome and those with central sensory sensitivity (EHS, MCS, photophobia, photophobia and more)
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http://www.mimpractice.com/podcast/2020/4/14/coronavirus-issues-in-chronic-fatigue-syndrome

These are the questions that many of my patients at Mosman Integrative Medicine are asking. Dr Mark takes the most common questions
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http://www.mimpractice.com/blog/2020/4/4/qfjrte96mfvux1zr90toj2v71bobym

SOME ADVICE ABOUT CHRONIC FATIGUE SYNDROME AND SARS COV-2 (CORONAVIRUS)
March 31, 2020


Dr Mark provides the first entry for chronic fatigue syndrome patients on the SARS-CoV-2 and COVID-19. What are the risks and what does the science tell us about risks in chronic fatigue syndrome
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http://www.mimpractice.com/blog/202...c-fatigue-syndrome-and-sars-cov-2-coronavirus
 
Canadian media have been rather slow to take this up so it's good to see a few recent ones.


Oakville woman sick with COVID-19 for four months

https://torontosun.com/news/local-news/oakville-woman-sick-with-covid-19-for-four-months

Susie Goulding is sick and tired of COVID-19. Literally.

Goulding has been sick — and exhausted — for 18 weeks and is what’s known as a “long-hauler” in the COVID-19 battle. She spends her days feeling weak, dizzy and without energy and experiencing what she calls brain fog — she can’t think straight.

During our conversation, Goulding paused often as the word she was after escaped her.
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Long-haul COVID-19 symptoms range from sore throat and cough to heart and other organ issues, headaches and trouble thinking straight, sensitivity to light and sound, rashes, numbness, muscle pain, insomnia and many other problems. A recent article in The Atlantic about long-haul COVID states that symptoms are similar to those experienced by people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), another ‘mystery’ illness that may also be post-viral.
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'LIFE-ALTERING': COVID-19 symptoms can linger for months

https://ottawasun.com/news/local-ne...haul/wcm/86d91b3a-70e7-4a68-9b53-e736bc3d92a1

A team of Ottawa researchers are among those around the world working to better understand the long-term effects of COVID-19 on patients’ bodies and minds.
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For months, they have lived with waves of often debilitating symptoms — coughs, fevers, rashes, gastro symptoms, exhaustion and more — not severe enough to land them in hospital beds, but relentless, worrisome and life changing.
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Some people with Long Covid are highlighting that a lot of people have had lung symptoms but I recall hearing some people with ME had viral pneumonia. And of course, many others had respiratory symptoms as part of their infection.
 
Opinion piece in the Guardian by Jemma Kennedy: I'm a Covid-19 "long-hauler". For us, there is no end in sight

Countless others, however, will struggle to manage crippling post-viral symptoms without help. We don’t yet know if post-Covid recovery is worse according to gender, ethnicity or age, but we know that those who are poor or disadvantaged socially will suffer disproportionately. Jobs will be lost, long-term care may be needed. Will long-haulers be eligible for state financial support and free specialist medical care beyond the 12 weeks offered by the NHS? Can we avoid the battle faced by chronic fatigue or ME sufferers, our closest cousins, who have historically found it difficult to a) get diagnosed, b) treated and c) recognised as even having a bona fide disease?
 
Starting to see some "formally" diagnosed as CFS.


Long-lasting COVID symptoms from lungs to limbs linger in coronavirus 'long haulers'

https://www.usatoday.com/in-depth/n...s-fight-months-lingering-symptoms/5420534002/

It's not all in their minds.

An unknown but growing number of the 4 million U.S. COVID-19 patients say they can't shake symptoms ranging from fatigue to serious respiratory or neurological problems, often for months after diagnosis. The ailments are all the more challenging because patients say they often face skeptical families, friends, employers and even doctors.
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"Doctors said at this late stage, some people are testing positive again and some are testing negative," Campbell said. Although the virus is no longer active, some of her doctors believe she could be experiencing long-term effects. She was diagnosed with chronic fatigue syndrome after months of battling the virus.
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Also seeing some references lately to "no end in sight", a hashtag that is getting a lot of attention and is a memetic marvel. Also in the recent Guardian article above.

Also some recent comments of post-COVID communities demoralized by doomsaying about the BPS train coming their way. It's a difficult subject because it will be massively harmful, but I don't think anything is gained by it. It will implode on itself naturally, exposing the charlatanism underneath, no matter what happens. Best to keep a neutral language.

There is some benefit that the BPS model isn't as prevalent in the US, which will have by far the most cases. So warning about it makes little difference. Already seeing a lot of discontent from post-COVIDers who are very pissed at the gaslighting so it will work itself out, this is the kind of thing that is too dystopian to warn about, being frank basically sounds insane. Because it is insane.
 
rvallee said:
Also some recent comments of post-COVID communities demoralized by doomsaying about the BPS train coming their way.
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I can understand that. Who wants to be bothering with what seems like political arguments when you just want to get better. Still, sticking your head in the sand won't help, far better to be forewarned than harmed.

Many of the ME patients I have met who are less severely affected won't get involved. They have blindly paid their membership fee to AfME even through the worst of their advocacy. When you tried to discuss it with them you got the dismissive hand wave and an "I can't be bothered with all that". They could still be bothered to whinge about the way the were treated by the system though, just not educate themselves about why it was happening.

Being chronically ill is hard. Finding yourself on the receiving end of the BPS narrative has the potential to be much worse than demoralizing.
 
I don't think this one actually got mentioned, did it?

Symptom Duration and Risk Factors for Delayed Return to Usual Health Among Outpatients with COVID-19 in a Multistate Health Care Systems Network — United States, March–June 2020

https://www.cdc.gov/mmwr/volumes/69...rOQPI2MGYN48eSjheGv2cpMRX97OeE9_zTAFys3vhqrqo

What is already known about this topic?

Relatively little is known about the clinical course of COVID-19 and return to baseline health for persons with milder, outpatient illness.

What is added by this report?

In a multistate telephone survey of symptomatic adults who had a positive outpatient test result for SARS-CoV-2 infection, 35% had not returned to their usual state of health when interviewed 2–3 weeks after testing. Among persons aged 18–34 years with no chronic medical conditions, one in five had not returned to their usual state of health.

What are the implications for public health practice?

COVID-19 can result in prolonged illness, even among young adults without underlying chronic medical conditions. Effective public health messaging targeting these groups is warranted.
Click to expand...
 
I was listening to TWIV #645 and about 3:45 into the podcast Vincent Racaniello says that he recently spoke with Ian Lipkin (who had Covid back in the March timeframe) and asked him if he had any lingering symptoms and Dr. Lipkin said that "I am always exhausted“.
 
All too familiar. This could all have been avoided, had it not been happening for decades with the same outcomes.


Coronavirus ‘long-haulers’ are losing their jobs, say patients

https://www.thetimes.co.uk/edition/...-are-losing-their-jobs-say-patients-zxlpv2fpf

People with long-lasting symptoms after contracting Covid-19 are losing jobs and struggling to get the care they need, campaigners say.

Patients have reported more than 170 continuing effects after infection with the virus, including fatigue, hair loss, vision problems, incontinence and disrupted menstrual cycles.

Many who were never hospitalised and did not have a positive test for the virus early in the outbreak say that some GPs are refusing to refer them to rehabilitation programmes.
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Louise Barnes, 46, of Saxmundham, Suffolk, who founded the online Post Covid Syndrome Support Group, said that many sufferers had been forced to give up jobs. Members had reported employers refusing to believe their staff were infected by the coronavirus in the absence of tests, she said.

“I was bombarded with messages pleading for help from people in the UK, people that are being fired by their employers,” she said.
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Martin Marshall, chairman of the Royal College of GPs, said that many of the symptoms being reported could also be signs of other conditions. “GPs will want to consider all possible causes before making a diagnosis, and any appropriate referral,” he added.
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That weird suggestion would imply that many people have undiagnosed conditions. Which, presenting like this, would explicitly not be diagnosed as they would be in the MUS/BPS/FND void of doom. Either that or medicine makes A LOT of mistakes, which is ironically true.
An NHS spokesman said: “The NHS nationally is making available a new online rehab service . . . alongside strengthening primary and community services . . . as well as the new Seacole Centre, which is a dedicated service to offer people rehab and recovery care.”
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There's totally an app for that. No services. Just an app. Because maybe it's something else. Maybe it's the wind. Maybe you're just a type A personality. Maybe you think too much. Maybe you don't think at all. Maybe this. Maybe that. Ghosts. Demons. COSMIC RAYS. Just go away, OK?

It's a common trope in sci-fi to make androids sort of crash by making them think about an unsolvable paradigm. Clearly, humans crash on those, too. All you need is ideology and the brain turns to pudding.
 
This was just posted to a UK-based list I’m on. I haven’t watched the programmer myself
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Channel 4 news programme this evening emphasised exercise being good for people recovering from Covid-19. Much of the film shown is from the national velodrome of Wales in Newport.

For coronavirus patients who have been treated in hospital, being discharged is often not the end of their ordeal.

Especially for the thousands of people who have been critically ill and ventilated, many of them needing extensive rehabilitation.

At the national velodrome of Wales in Newport, a new service has been launched to help people through their physical and psychological recovery.

It is also enabling survivors to share their experiences with others going through the same process.

https://www.channel4.com/news/new-service-launched-in-newport-to-help-covid-patients-recover

More of this report here -
 
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