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

rvallee · Aug 18, 2020

Long-suffering SARS patients offer clues about the worrisome futures that may await COVID-19 long-haulers

https://www.businessinsider.com/covid-19-long-term-symptoms-sars-chronic-fatigue-2020-8

Studies of SARS patients have shown that many suffered from symptoms resembling chronic fatigue syndrome years after their infections.

Doctors are drawing a similar link between chronic fatigue and lingering COVID-19 symptoms.

It's unclear how long these symptoms will last, since research into SARS diminished before treatments were developed.

A SARS researcher thinks some people with long-lasting COVID-19 symptoms may never be able to return to work.

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Wow, sure looks like it wasn't super smart to dismiss those sick people as mentally ill and leave them off to fend for themselves. Or doing the same with every single past outbreak that lead to post-viral illnesses. One could actually describe that as a massive, catastrophic failure.

A 2011 study of 109 SARS patients in Toronto found that more than half hadn't returned to work a year after they were discharged from the ICU. And 2009 research in Hong Kong found that more than 40% of SARS patients studied there reported chronic fatigue four years after their illness began.
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But what will be crucial this time, Moldofsky added, is that funding continue for long-term follow-up research — unlike what happened when he sought to keep studying SARS.
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Ah, yes, the good old "we tried nothing so it's probably not real" strategy. Smart.

"Nobody wanted to touch it because there was no incentive to get involved in a disease that disappeared," Amesh Adalja, a senior scholar at the Johns Hopkins University Center for Health Security, told Business Insider. "If we would have had a countermeasure against SARS in 2003, we would have been in a much better place."
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Other than the fact that it happens with many outbreaks because it happens with many infectious diseases. Very smart that old "object permanence is overrated" strategy.

After studying the healthcare workers for an average of two years, Moldofsky found similarities between the SARS patients and people with chronic fatigue syndrome. Some of the healthcare workers, he added, wound up in and out of the hospital for years.

"They recovered from the acute illness, but they still had lingering symptoms," Moldofsky said.

His research also identified a bundle of symptoms — persistent fatigue, muscle pain, weakness, and non-restorative sleep — that were unique to SARS patients. He labeled the condition "chronic post-SARS syndrome."

"We showed that these were a distinct group of people, similar to the fibromyalgia [patients], but without as much pain," he said.

But after Moldofsky's paper was published in 2011, it fell into "relative obscurity" along with the rest of SARS research, he said.
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"As happened after the SARS outbreak, a proportion of COVID-19 affected patients may go on to develop a severe post viral syndrome we term 'Post COVID-19 Syndrome,'" researchers at Manchester University wrote in June. They defined the condition as "a long term state of chronic fatigue" in which people experienced additional pain or brain fog after increased physical activity.
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Obviously not a forest, this is clearly just a bunch of trees.

A growing chorus of doctors, including Fauci, have likened long-lasting coronavirus symptoms to chronic fatigue syndrome, which is often characterized by cognitive impairment, muscle pain, and a debilitating lack of energy.

"There's talk in the the medical community about a chronic fatigue syndrome-like illness that could happen after coronavirus," Favini said.

Simon Wessely, former president of the Royal College of Psychiatrists, told New Scientist in April that he predicted the pandemic would lead to "many, many cases of post-infective fatigue syndrome."
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Can there be much more than talk and much less of that ME-denying jerk?

Moldofsky said the current refrain among physicians is similar to the one he heard in 2011: "We don't know what to do with our patients. They're complaining they're sick, but they're not sick. We can't find anything wrong with them."
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Because those words are very familiar.

As more coronavirus patients struggle with the long-term aftermath of their infections, scientists have begun to investigate the drivers of these lasting symptoms. Researchers at King's College London are examining whether certain genetic or environmental factors might lead to post-COVID syndrome. In May, a coalition of scientists at the Open Medicine Foundation embarked on a multi-year study to see whether COVID-19 triggers chronic fatigue syndrome.

Rep. Jamie Raskin, a Democrat from Maryland, has also co-sponsored a bill in Congress that calls for $15 million in annual funding through 2024 to support research into COVID-related cases of chronic fatigue.
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Now let's medicalize the crap out of this, shall well? Much less therapy, way more T-cells.

Andy · Aug 18, 2020

Rehabilitating COVID-19 “Long-Haulers”: The ME/CFS Connection
https://www.medbridgeeducation.com/...-covid-19-long-haulers-the-me-cfs-connection/

Applying Insights from ME/CFS to the Rehabilitation of Post-COVID Long-Haulers
Workwell Foundation has developed a two-part MedBridge continuing education course that addresses many of the complex issues facing the rehabilitation of long-term COVID-19 patients. We have dedicated over twenty years of research to understand the metabolic, pulmonary, and cardiac complications of people suffering from ME/CFS, a complex neuroimmune disease often triggered by viral infections. ME/CFS shares considerable overlap with long-term COVID-19 symptoms and has been linked to other coronaviruses, such as SARS and MERS.
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rvallee · Aug 18, 2020

Managing post-acute issues in COVID patients: What GPs need to know

https://www1.racgp.org.au/newsgp/clinical/managing-post-acute-issues-in-long-haul-covid-pati

It is not known why some people’s recovery is prolonged, but the authors say ‘persistent viraemia due to weak or absent antibody response, relapse or reinfection, inflammatory and other immune reactions, deconditioning, and mental factors such as post-traumatic stress’ may all contribute.

They say many patients recover spontaneously, if slowly, with holistic support, rest, symptomatic treatment, and gradual increase in activity.
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‘After the acute SARS episode some patients, many of whom were healthcare workers, went on to develop a chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)-like illness, which nearly 20 months on prevented them returning to work,’ the authors of the letter wrote.

‘We propose that once an acute COVID-19 infection has been overcome, a subgroup of remitted patients are likely to experience long-term adverse effects resembling CFS/ME symptomatology such as persistent fatigue, diffuse myalgia, depressive symptoms, and non-restorative sleep.’
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Associate Professor Kotsirilos says she would advise patients experiencing fatigue to address lifestyle and behavioural factors.
‘Ensuring that they eat well, that they rest, they’re cared for by other people, go to bed early for a good night’s sleep and a graded exercise program,’ she said. ‘It would be just like [management strategies for] patients suffering post-viral fatigue.’
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Meanwhile, non-specific symptoms such as headaches, dizziness and ‘brain fog’ require supportive management and symptom monitoring.

Brain fog is a particularly common symptom reported by patients who describe themselves as ‘long-haulers’.
Associate Professor Kotsirilos says measures that can help a patient manage fatigue are also applicable for brain fog.

‘Brain fog has been seen with other post-viral chronic fatigue syndromes,’ she said.

‘With brain fog, it’s all about resting, avoiding the computer, letting the head or brain rest, not returning to work too quickly, exercise especially outdoors for fresh air but gradually.’

Other measures include ensuring adequate sleep, reducing stress and eating well.
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‘When patients have suffered from COVID-19 infection and are suffering long-term effects like chronic fatigue, GPs are in a great position to validate their symptoms, reassure them, explain to them that it is a new disease, we’re only just coming to understand it, but it is common to get post-viral fatigue, brain fog and other symptoms,’ she said.

‘GPs play an important role in helping patients make a full recovery post COVID-19 infection.’

She says GPs can also use this opportunity to discuss lifestyle measures, exercise, reducing stress and avoiding harmful substances like excessive alcohol and smoking.
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‘Patients, many of whom were young and fit before their illness, have described being dismissed or treated as hypochondriacs by health professionals,’ the authors wrote.
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I can't imagine why.

Tired: why fix something that's not broken?
Wired: why fix something that's clearly disastrous?

It's only a few months removed from a report that plainly and explicitly stated this approach is a dismal failure and advised a course correction. And the plan is to do exactly what failed before, with for the most part just hoping it goes away on its own. That thing where you come up with stuff entirely out of your imagination is working out very poorly.

Sly Saint · Aug 19, 2020

Long-Haulers Are Redefining COVID-19

More than 90 percent of long-haulers also have “post-exertional malaise,” in which even mild bouts of physical or mental exertion can trigger a severe physiological crash. “We’re talking about walking up a flight of stairs and being out of commission for two days,” Putrino said. This is the defining symptom of myalgic encephalomyelitis, or chronic fatigue syndrome. For decades, people with ME/CFS have endured the same gendered gaslighting that long-haulers are now experiencing. They’re painfully familiar with both medical neglect and a perplexing portfolio of symptoms.
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These symptoms defeat intuitions that people have about work and rest, sickness and recovery. “You have to get away from this idea that you can do more each day, or that you can push through,” says Caroline Dalton of Sheffield Hallam University in England, who works for a COVID-19 rehabilitation program. Many long-haulers push themselves because they miss their lives, or need to return to work. But as her colleague Robert Copeland, a sport psychologist, explains, “managing your fatigue is now your full-time job.”
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Nichols is a few weeks away from meeting the CDC’s criteria for ME/CFS. She has post-exertional malaise. She has brain fog. On September 9, she’ll mark her sixth month of extreme fatigue. “Am I happy about it? No,” she said. “But I have to face reality. If this is what I have, this is what I have.” Lots of long-haulers are in the same boat. Many (but not all) cases of ME/CFS are triggered by viral infections, and new clusters have historically emerged after outbreaks. “When COVID-19 started to happen, I said to my husband, ‘Oh God, there’s going to be an avalanche of ME/CFS,’” Lange told me.
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Some long-haulers are skeptical—and even angry—about the ME/CFS connection. They won’t countenance the prospect of being chronically disabled. They don’t want to be labeled with a condition that has long been trivialized. Nichols sympathizes; she used to trivialize it herself. “I falsely thought it was just people being too tired—and I feel terrible about that,” she said. Her plan is to use her imminent diagnosis as fuel for advocacy, “as a way of paying back the ME community for my disbelief.”
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other mentions of ME/CFS.
full article
https://www.theatlantic.com/health/...9-recognition-support-groups-symptoms/615382/

Sly Saint · Aug 19, 2020

We must do a comprehensive study on Covid-19 'long-haulers.' A lot is at stake | Oved Amitay and Anthony L Komaroff

The symptoms of post-Covid long haulers can be indistinguishable from those typical of the illness called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Indeed, in many people with ME/CFS the illness started after an infectious-like illness or well-documented infection. The US National Academies of Sciences, Engineering and Medicine and the Centers for Disease Control and Prevention estimate that as many as 2.5m Americans were suffering from ME/CFS before the Covid-19 pandemic, generating direct and indirect costs of $17-24b annually. The pandemic may drive these numbers higher.

Dr Anthony Fauci, the head of the federal government’s infectious diseases institute, has acknowledged a possible connection between Covid-19 and ME/CFS: “Even after you clear the virus, there are postviral symptoms,” he said in an interview with Medscape. “And it’s extraordinary how many people have a postviral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome. They just don’t get back to normal energy or normal feeling of good health.”

We agree with Dr Fauci: Getting the pandemic under control is obviously the top priority, but we also should not ignore the long-term impact of Covid-19. The threat of severe illness and death may be behind them, and the virus may no longer be detectable in their bodies, but some people with Covid-19 remain seriously incapacitated. We need to figure out why, and try to fix it.

A study of Covid-19 long haulers may well also shed light on ME/CFS and post-infectious fatigue syndromes following infections other than COVID-19. One major obstacle to understanding the long-term effects of Covid-19 is the lack of available data. The scientific community – public and private – needs to gather as much data as possible while we are still in the early phases of this Covid-19 era.
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full article
https://www.theguardian.com/comment...19-long-haulers-we-need-a-comprehensive-study

Rick Sanchez · Aug 19, 2020

Sly Saint said: ↑

Long-Haulers Are Redefining COVID-19

other mentions of ME/CFS.
full article
https://www.theatlantic.com/health/...9-recognition-support-groups-symptoms/615382/
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Very impressive piece. Strongly recommend everyone here read it. Was easily digestible as well

Leila · Aug 19, 2020

First time I see sensory sensitivity specifically being mentioned now in long covid! (in the Atlantic article)

"sensitivity to light and sounds, and brain fog."

Tom Kindlon · Aug 19, 2020

https://twitter.com/user/status/1296102129619406849

NelliePledge · Aug 19, 2020

Tom Kindlon said: ↑

View attachment 11767
https://twitter.com/user/status/1296102129619406849

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Have you shared this with any of the long Covid advocates maybe they will post on their groups?

Tom Kindlon · Aug 19, 2020

NelliePledge said: ↑

Have you shared this with any of the long Covid advocates maybe they will post on their groups?
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Well I shared it to the #LongCovid hashtag. It's also on Facebook:

People are free to share this to whoever they wish

rvallee · Aug 19, 2020

rvallee said: ↑

Managing post-acute issues in COVID patients: What GPs need to know

https://www1.racgp.org.au/newsgp/clinical/managing-post-acute-issues-in-long-haul-covid-pati

I can't imagine why.

Tired: why fix something that's not broken?
Wired: why fix something that's clearly disastrous?

It's only a few months removed from a report that plainly and explicitly stated this approach is a dismal failure and advised a course correction. And the plan is to do exactly what failed before, with for the most part just hoping it goes away on its own. That thing where you come up with stuff entirely out of your imagination is working out very poorly.
Click to expand...

https://twitter.com/user/status/1295843142693015553

Let them know about how badly they are screwing this up.

Snowdrop · Aug 19, 2020

Re: https://www1.racgp.org.au/newsgp/clinical/managing-post-acute-issues-in-long-haul-covid-pati

Thanks to Dr Belinda Rowland for correcting some misconceptions around ME.

Tom Kindlon · Aug 19, 2020

Tom Kindlon said: ↑

View attachment 11767
https://twitter.com/user/status/1296102129619406849

Click to expand...

For data from another study, see
"Differentiating Multiple Sclerosis (n=106) from #MyalgicEncephalomyelitis and #ChronicFatigueSyndrome (n=269)"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5800741/
This table gives data on frequency/severity of 60 symptoms (see "Measures" for explanation)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5800741/table/T3

https://twitter.com/user/status/1296148941206167555

Dolphin · Aug 20, 2020

https://twitter.com/user/status/1296159945935581184

https://twitter.com/user/status/1296160111648321536

https://twitter.com/user/status/1296160266757931009

https://twitter.com/user/status/1296160553694400512

https://twitter.com/user/status/1296161138086785024

https://twitter.com/brianvastag/status/1296161344803106816
https://twitter.com/brianvastag/status/1296161774027198465

https://twitter.com/brianvastag/status/1296167608727662592

Leila · Aug 20, 2020

As much as long covid might be a chance for ME research it might be a risk for the little medical access "we" have left if thousands of new patients are going to see "our" doctors now.

When the 2nd Corona wave will hit in fall the first wave of long haulers will have met the 6months mark needed for an official ME diagnoses. The vast majority of them won't get it simply because their doctors have no clue, but the more ME publicly is being discussed as a result of Covid the longer the waiting list at ME docs will become, I guess?

There's nothing to do about it and I feel full solidarity for all post viral patients but it worries me.

Kitty · Aug 20, 2020

Leila said: ↑

As much as long covid might be a chance for ME research it might be a risk for the little medical access "we" have left if thousands of new patients are going to see "our" doctors now.
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True, but so many of us have never had access to a doctor with an ME specialism anyway that it may not make much practical difference?

Jaybee00 · Aug 20, 2020

The symptoms of post-Covid long haulers can be indistinguishable from those typical of the illness called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
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Is this sentence as bad as I think it is? Hmmm maybe it is indistinguishable because IT IS MECFS.

(from Komaroff article)

JemPD · Aug 20, 2020

Tom Kindlon said: ↑

For data from another study, see
"Differentiating Multiple Sclerosis (n=106) from #MyalgicEncephalomyelitis and #ChronicFatigueSyndrome (n=269)"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5800741/
This table gives data on frequency/severity of 60 symptoms (see "Measures" for explanation)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5800741/table/T3

https://twitter.com/user/status/1296148941206167555

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In the Diff.MS from ME study.... what do the M & SD stand for? is it Mean & standard deviation?
I get befuddled - does n=120 vs 269 mean there were 120 MS patients responding & 269 PwME?

If so then I am too foggy & was never good at maths.... can someone explain how you work out the comparison in lay terms... it appears that there were more people with ME experiencing almost all the symptoms, but if there were more than double the number of people with ME responding..... I cant make head nor tail of it

Cheshire · Aug 20, 2020

Sly Saint said: ↑

Long-Haulers Are Redefining COVID-19

full article
https://www.theatlantic.com/health/...9-recognition-support-groups-symptoms/615382/
Click to expand...

By Ed Yong, author of this article

https://twitter.com/user/status/1296450095429357570

https://twitter.com/user/status/1296450099426529280

https://twitter.com/user/status/1296450100282220545

Dolphin · Aug 20, 2020

https://twitter.com/user/status/1296304357110099969

https://twitter.com/user/status/1296089329719099392

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

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