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

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Starting to see a bit more MDs openly voicing support to do more. Bit of a mix between those aware of ME and those who buy the psychiatric framing, but it's rarely as simple-minded as "mind-body blah blah", which is significant progress. Of sorts.

 
In it for the Long Haul: More Questions than Answers on the Lasting Health Effects of COVID-19

(Paragraphs mine for legibility)

Most people with COVID-19 fully recover within weeks of the onset of their illness. But for some, the resolution of the acute infection is not the end of their COVID-19 journey. Some COVID-19 survivors have experienced new, returning or ongoing health problems (“sequelae”) that persist long after the acute illness. Viral infections can cause long-term sequelae, and there is increasing recognition that COVID-19 may cause persistent health problems in survivors.

As of June 1, 2021, there have been more than 170 million cases of COVID-19 reported worldwide, and the true number of infections is much higher—possibly more than one billion, including more than 100 million in the United States. If even only a small proportion of those infected develop long-term sequelae, this would create a significant public health challenge. There is a tremendously wide range of estimates of the proportion of COVID-19 survivors who experience long-term symptoms—studies suggest it could be from one in 10 to more than half.

We need to better understand how many people experience long-lasting symptoms in order to prepare for and address potential public health and societal impacts. Better understanding the spectrum of recovery from COVID-19 also will help us to care for and support those with long-lasting symptoms. It is critical that we increase vaccination and thereby reduce the number of people who get infected with COVID-19, which will also prevent lasting health problems due to COVID-19.​

https://preventepidemics.org/covid19/science/review/june-4-2021/
 
Podcast from Nature: Coronapod: counting the cost of long COVID

"The global burden of COVID-19 has predominantly been measured using metrics like case numbers, hospitalisations and deaths. But the long term health impacts are more difficult to capture. In this episode of Coronapod we discuss one way that public health experts are trying to get to grips with the problem using metrics such as disability adjusted life years (DALYs) and quality adjusted life years (QALYs).

As new data suggests that COVID could leave millions with lasting disability or ill-health, we ask how changing the lens through which we asses the impacts of COVID could change public health policies, the perception of risk and even the behaviour of individuals."

https://www.nature.com/articles/d41586-021-01603-w
 
Mij said:
We can change the language of calling it 'fatigue' and replace it with autonomic impairment? There are treatments available for this. Many of us would be a lot less disabled if this was properly diagnosed and treated.
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Removing fatigue from the name would be a bit misleading since it is the main symptom. That being said, incorporating autonomic dysfunction / impairment into the nomenclature is a good idea. For example instead of CFS, call it CADFS - chronic autonomic dysfunction and fatigue syndrome.

One caveat being however if doing this might exclude some people who do not suffer from autonomic dysfunction. I am doubtful if there are such people though. I've noticed that almost every person with ME/CFS reports some kind of autonomic symptoms, be it postural tachycardia, low blood pressure, problems with temperature regulation, frequent urination, IBS / gastroparesis (don't forget digestion regulated by the ANS), etc. So yeah calling it CADFS might be a good idea.
 
@borko2100

There is a subgroup that don't have autonomic dysfunction, I didn't until 10 years into the illness after I had a relapse from reactivation of EBV and HHV6 at the same time. I also didn't experience PEM until years later.

It does appear that autonomic issues plays a role in PEM, but sometimes it's not noticeable until years later, at least it was for me.
 
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Andy said:
the problem using metrics such as disability adjusted life years (DALYs) and quality adjusted life years (QALYs)
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Is the problem that it's a measure that is selectively trusted, or entirely dismissed when inconvenient? Because that's a huge problem. Our QALY has been measured many years ago and not a single medical or public health institutions gives a fig, they simply pretend it doesn't exist.

Rules, standards, oaths, they are all equally meaningless words somewhere on a computer if they can be arbitrarily trusted or dismissed based on personal whims and fancies. What this means is that they are universally meaningless, making the whole process completely arbitrary, with a pretense that keeps the dysfunction going. And that's actually two problems, big ones that feed on themselves.
 
borko2100 said:
Removing fatigue from the name would be a bit misleading since it is the main symptom.
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Fatigue was not the main symptom of ME, that was an abnormal response to exercise.

When the CDC considered the Lake Tahoe outbreak they thought it was epidemic EBV so they called in the expert on that Stephen Strauss. Prolonged EBV disease was defined as a positive EBV test then 6 months of prolonged fatigue that caused 50% less ability to function.

When it was discovered that not all the patients were positive for EBV he simply dropped the requirement for the positive test and renamed chronic Epstein Barr syndrome as Chronic Fatigue Syndrome. The name was meant to be temporary until they found the cause but Strauss then decided it was psychological and toured the US telling doctors it was, well basically nothing much.

So we had fatigue and all the way they think all fatiguing illnesses are the same.

I never had fatigue until I got other diseases. I was energetic until I suddenly stopped, which I would call fatiguability.
 
Huge grain of salt for N=1 but a report of a long hauler who caught it again and saw her LC symptoms resolve following an injection of monoclonal antibodies.

Went from barely being able to walk to waking up fine one day. Neither needed extensive rehabilitation, or any of that nonsense. I don't understand how so many physicians are still obsessed with rehabilitation when it's clear that the facts don't align.

https://www.houstonchronicle.com/ne...of-the-nation-s-first-COVID-Long-16178525.php

Home with her parents, she was twice unable to breathe on Dec. 22 and 23. Soon, they all expected, she’d have to return to the hospital.

But on Dec. 24, she woke up fine. She showered. She walked downstairs. “It was crazy,” she said. “I was fine.”

It was as if she hadn’t caught COVID a second time. She cried, thrilled that her family was there to see the improvement: “It was such a Christmas miracle.”

Then came the second round of the miracle: Her long COVID symptoms began fading. As the weeks passed, she felt better and better. She read more easily. She graded essays faster. Her energy returned.

She asked her doctors, “Is this normal? Am I crazy?” They ran stress tests and breathing tests: The improvement was measurable.

By late January, except for occasional heart palpitations, it was almost as if she’d never caught COVID at all. In February she stopped taking blood thinners.

Now, she said, she can work long hours again. She scales rock-climbing walls. Last week she went for a ten-mile hike.​
 
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