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

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.

 

https://twitter.com/user/status/1404161704720732167


Chew-Graham, really? Ugh. She knows she can't just do a full 180 without actually admitting to having seriously failed, right? And that she has no credibility because of this. Apparently not.

 

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.​

 

A sympathetic article in a Swedish online magazine (published by TCO/The Swedish Confederation of Professional Employees which is comprised of 13 affiliated trade unions)

”Vi ligger i våra hem och vi syns inte”
https://www.arbetsvarlden.se/vi-ligger-i-vara-hem-och-vi-syns-inte/

Google Translate, English

 

Long COVID Patients Are Taking Their Health Into Their Own Hands

https://www.vice.com/en/article/bvz...-are-taking-their-health-into-their-own-hands

Inside the Dallas Buyers Club for London's long-haulers, some of whom have been forced to forge prescriptions and experiment with horse medication.​

This is what happens when a professional monopoly is derelict in its obligations. It's basically like a giant funneling program to the alternative medicine industry, probably the single biggest boon for quackery in history. If physicians don't like people doing medicine on their own they can't both be a totalitarian legal monopoly and refuse to do their job. It's an either/or thing.

 

Clinical neuroscience and long covid

https://blogs.bmj.com/bmj/2021/06/15/clinical-neuroscience-and-long-covid/


Nothing compelling and still this certainty that psychological and rehabilitation therapy are "needed", and it clearly confuses some correlations as being causative, but this is a change of framing that is significant:

Collecting epidemiological data, identifying symptom clusters, and evaluating representative patients on the basis of these could provide insights into long covid. Life-course epidemiological methods may be useful when constructing studies to explore long covid. Intensive clinical research that could be set up rapidly alongside evidence synthesis may lead to a better understanding of the pathophysiology of long covid. Furthermore, such research may benefit patients with pre-existing neurological disorders, such as Parkinson’s disease, multiple sclerosis, and chronic fatigue syndrome. ​

Although the reference for that paragraph is "fatigue in neurological diseases", probably confusing ME for chronic fatigue alone, but still... ME referred to as a neurological disease in the BMJ is something that was not seen until now.

 

https://twitter.com/user/status/1404471271862194179

 

https://twitter.com/user/status/1405895391170682882

 

Has some talk about "post-viral syndromes" in general. May signal a shift, but some of the language suggests just more of the same, whatever "the associated behavioral health conditions" is supposed to mean. Two for one from the American Medical Association.


AMA adopts new policy to better diagnose and treat long-haul COVID-19

https://www.ama-assn.org/press-cent...-better-diagnose-and-treat-long-haul-covid-19

With millions of people in the United States experiencing post-acute sequelae of SARS-CoV-2 infection (PASC), also known as long-haul COVID, and millions more expected to suffer from the condition, the American Medical Association (AMA) today adopted policy during the Special Meeting of its House of Delegates aimed at improving the assessment, diagnosis, and awareness of post viral syndromes.​

More resources needed to help millions living with “long COVID”

https://www.ama-assn.org/delivering...ources-needed-help-millions-living-long-covid

The AMA House of Delegates adopted policy supporting “the development of an ICD-10 code or family of codes to recognize Post-Acute Sequelae of SARS-CoV-2 infection (‘PASC’ or ‘long COVID’) and other novel post-viral syndromes as a distinct diagnosis.”

...

In a separate action, delegates moved to address post-viral syndrome, which occurs when an individual experiences overwhelming fatigue that does not improve with rest.

This condition also worsens after physical, mental or emotional exertion. Patients with post-viral syndrome also report stigmatization, marginalization and have higher rates of suicide. This is in part due to the lack of understanding of their condition by physicians and the public, according to resolution presented at the AMA Special Meeting.​

One good change would be ending all this silliness about "fatigue", ignoring most symptoms, although I guess they mean PEM here without naming it.


Also possibly relevant but depending on the meaning of common words and whatever force this vote has:

The AMA also voted to call for the HHS' Office for Civil Rights to revise the definition of harm to include mental and emotional harm. ​

https://www.axios.com/ama-long-haul...ans-b80618a1-485d-44cb-aea8-408758ee8fc3.html

 

Not sure when and if deadline passed but...

https://twitter.com/user/status/1406675509623283712

 

Stanford medicine: Stanford researchers find signs of inflammation in brains of people who died of COVID-19

Quote:
“It’s likely that many COVID-19 patients, especially those reporting or exhibiting neurological problems or those who are hospitalized, have these neuroinflammatory markers we saw in the people we looked at who had died from the disease,” he added. It may be possible to find out by analyzing these patients’ cerebrospinal fluid, whose contents to some extent mirror those of the living brain.

“Our findings may help explain the brain fog, fatigue, and other neurological and psychiatric symptoms of long COVID,” he said.

 

https://www.globenewswire.com/news-...-Group-over-Placebo-in-18-of-24-Symptoms.html

"CytoDyn Inc. Announces Positive Preliminary Results of Unblinded Data from Long-Haulers Trial Showing Greater Improvement in Leronlimab Group over Placebo in 18 of 24 Symptoms"

"If this trial is successful, CytoDyn plans to pursue clinical trials to evaluate leronlimab’s effect on immunological dysregulation in other post-viral syndromes, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."

 

If long Covid is induced by psychiatric trauma or similar theory, how is it that so many with asymptomatic or very mild Covid get long Covid? Just hearing you might have Covid but without symptoms is likely to be met with at least satisfaction, not a traumatic experience.

 

Bloomberg article: Long Covid May Help Us Understand Other Chronic Diseases

What bothers me is that again, they say that until now they didn't really know which viruses are more likely to cause ME/CFS. Edit: also about being wiped out: only two years before my EBV infection, I had a much more serious influenza infection that made me lose a lot of weight in a very short time, inluding muscle mass. However, I only noticed the loss of muscle during my workouts, not otherwise and I was back to normal very quickly. The two were nothing alike.

Before Covid came along, many previously healthy people developed debilitating symptoms or extreme exhaustion following viral infections. Such post-viral syndromes were inherently difficult to study, said NIH director of clinical neurology Avindra Nath. Many patients wouldn’t realize there was something wrong for some time after the initial infection, since it’s normal to feel wiped out for a couple of weeks of being sick.

It isn’t yet clear which viruses are likely to cause chronic symptoms or which kinds of people are most at risk from them. Often lumped together as chronic fatigue syndrome, even the numbers are hard to pin down — an Institute of Medicine estimate ranges from 800,000 to 2.5 million cases in the U.S.

(...)

In the past, infectious diseases were considered something separate from chronic diseases such as cancer and Alzheimer’s disease. But the distinctions have been falling. Cervical cancer is triggered by a virus, and a theory connecting infections to Alzheimer’s disease is gaining traction. Post-viral syndromes fell through the crack in the middle, but that’s rightly starting to change.​

Full article: https://www.bloomberg.com/opinion/a...rstand-diseases-like-chronic-fatigue-syndrome

 

So far what I'm seeing of people maintaining that line is that they completely ignore the asymptomatic or mild cases, asserting they must not have had Covid (and obvious ignoring the fact that many did test positive).

Basically fingers in ears shouting LA-LA-LA-LA.

 

Even discounting how weak this claim is, Leonard Jason has literally been running a NIH-funded study on this for many years and there are more than a dozen post-XXX syndromes. As in literally named "post-XXX syndrome". Officially, with some being accepted and others arbitrarily rejected but nonetheless there are just that many.

I'm gonna go on a limb here and make the risky assertion that when people are suffering from post-Dengue syndrome, it's because we kind of sort of know that it was maybe probably surely Dengue, or insert any one of the other XXX's here.

I do like to take risks like that and make controversial claims like that.

Really looking forward to the day when such blatant lies are not longer acceptable to make, or at least get immediately countered.

 

A press release published today, by the Swedish National Board of Health and Welfare.

Flest postcovidpatienter inom primärvården – kvinnorna i majoritet
https://www.socialstyrelsen.se/om-s...ter-inom-primarvarden--kvinnorna-i-majoritet/

"a total of more than 11 000 patients in primary care have been diagnosed with post-covid"

 

0.1% prevalence?

 

I've been following the discussions in several Swedish long covid/post-covid groups on Facebook for a while now. One thing I've noticed is that ME appears to be an increasingly controversial topic.

Lots of people argue that discussions about ME shouldn't be allowed in the long covid groups (basically because talking/thinking about ME creates fear and anxiety, and also because ME is "a different disease" with its own groups), while others (including pwLC who have recently been diagnosed with ME, and pwME who have long covid) believe it should definitely be allowed.

One of the groups seem to have solved the issue for now by requiring a trigger warning for posts that mention ME.

I haven't seen any similar resistance to other diagnoses such as POTS, for example.

Is this happening in other countries as well?