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

Leviner S, Recognizing the Clinical Sequelae of COVID-19 in Adults: COVID-19 Long-Haulers, The Journal for Nurse Practitioners (2021), doi: https://doi.org/10.1016/ j.nurpra.2021.05.003
https://www.npjournal.org/article/S1555-4155(21)00222-1/fulltext

 

SBU Sweden published their "inventory and prioritisation of postcovid research" today.

"By highlighting research questions that patients, researchers and those working in the field themselves prioritise, the aim is to draw attention to where research needs exist."

Inventering och prioritering av forskningsfrågor gällande långvariga symtom vid covid-19 (postcovid)
https://www.sbu.se/sv/publikationer...nde-langvariga-symtom-vid-covid-19-postcovid/

 

Is the list of priorities really in reverse order? How can finding treatments be priority #1 when we don't even understand the problem(s)? Followed by rehabilitation, same issue. Completely backwards. They're trying to work their way from the conclusions they want to achieve. This is not how complex problems are solved, this is how we work when we already understand enough, which is obviously not the case here.

Or maybe it's a pyramid where #1 is the outcome? Because you don't get to the top without first building the base. Nothing works like that. Ever.

 

Der Tagesspiegel 100.000 Erkrankte mehr aufgrund von Covid-19
google translation: 100,000 more sick people due to Covid-19

Quotes:
The thermometer shows thirty degrees on Tuesday afternoon in Berlin. According to the RKI, 3,533,376 people in Germany have been proven to have been infected with the coronavirus since the beginning of the pandemic. Many of them have recovered and are now enjoying the sun's rays. Many others, however, are still sick and weakened in their beds at home.

Paralyzing exhaustion, headaches and poor concentration - these are just a few of the many symptoms that so-called Long Covid patients still suffer weeks or months after their illness. And suddenly a group of people comes into focus who already had these symptoms when nobody was talking about corona or even a pandemic.

The group of people who have been almost forgotten and invisible for decades . Those people who lived in domestic isolation long before Covid-19: They are those who suffer from Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).

...

It is estimated that Covid-19 is expected to increase 10 million new diagnoses of ME / CFS worldwide. It currently affects around 17 million people. Carmen Scheibenbogen suspects that by the end of this year there will be 100,000 affected people in Germany who will develop a full picture of the chronic disease ME / CFS after a Covid 19 infection. The number of patients in Germany is currently estimated at 250,000.

Thread about a larger study by the same team a year later:
Recovering or Persisting: The Immunopathological Features of SARS-CoV-2 Infection in Children, 2022, Buonsenso et al

 

News Medical Net Study reveals acute immunologic changes in children with long COVID

quote:
The study findings underline the existence of PASC in children as an organic entity rather than one that is ‘all in the mind,’ owing its origin rather to pandemic- and infection-induced isolation. These are the first objective signs that PASC is the result of specific immunologic changes in affected children.

Whereas fully recovered children showed complete B cell restoration to normalcy, as shown by the B cell subset analysis mentioned above, this is not observed in children with PASC. Instead, these patients continue to suffer abnormal activation of plasmablasts, switched B cells and memory B cells, which leads to chronic symptoms.

The high levels of two pivotal inflammatory cytokines also indicate that innate immunity is a key underlying process in pediatric PASC. These findings could explain why symptoms like tiredness, inability to exert oneself, headache, joint and muscle pain, and tachycardia, are characteristic of this state.

Link to study:
Medrix Immune profile of children with post-acute sequelae of SARS-CoV-2 infection (Long Covid) by Gabriele Di Sante et al

Abstract
There is increasing reporting by patients’ organization and researchers of long covid (or post-acute sequelae of SARS-CoV-2 - PASC), characterized by symptoms such as fatigue, dyspnea, chest pain, cognitive and sleeping disturbances, arthralgia and decline in quality of life. Immune system dysregulation with a hyperinflammatory state, direct viral toxicity, endothelial damage and microvascular injury have been proposed as pathologenic mechanisms. Recently, cohorts of children with PASC have been reported in Italy, Sweden and Russia. However, immunological studies of children with PASC have never been performed.

In this study, we documented significant immunologic differences between children that completely recovered from acute infection and those with PASC, providing the first objective laboratory sign of the existence of PASC in children.

 

This is from Ireland

 

This seems like a dead end to me, considering the Rituximab results. Maybe dysregulated B-cells are a downstream effect of something else thats wrong. The way the article author put it, it seems like they are certain the symptoms are caused by those activated B-cells. If it was that simple then administering Rituximab or other B-cell killing drugs would result in a cure or a remission. Which will probably be done at some point with the same results as the studies done on ME/CFS patients. Unless of course long covid and ME/CFS are different entities, then maybe it might work who knows.

 

https://www.thelancet.com/journals/laninf/article/PIIS1473-30992100211-5/fulltext

There was no increased risk for:

Also discussed here:

https://www1.racgp.org.au/newsgp/clinical/increase-in-gp-visits-following-mild-covid

 

This small nugget really shows the intellectual bankruptcy of the whole thing. It is the immutable truth that by default the explanation must be psychological, the negative must be proved otherwise it stands tall and true. And everyone plays along with it for inexplicable reasons. This dogma is unassailable, it must be respected in full from the mere reality that some people believe in it and too many reinforce those beliefs by peer pressure.

This is simply not serious. There is zero actual difference between this and pre-science beliefs that some god works in some mysterious ways and that trying to find natural explanations for those phenomena was heresy, a challenge to those beliefs.

The whole thing predates both modern science and modern medicine. And it's still around, every bit as strongly believed as it ever was. It's still there in plain language in scientific articles,just because. It's so absurd.

 

Good grief this is embarrassing and yet this physician probably doesn't even feel embarrassed for it and that makes it all so much worse.

Did he just never hear about PEM until this year? Does he think it was invented last year for Long Covid? WTH? This isn't even 101 stuff, it's what goes into the summary of what the 101 course will be about. Did he just never search for the term? Anywhere at all?

How are we supposed to achieve anything when confused people occupy the place, self-assured in their expertise?

 

I listened back to the programme. I don't know if others will be able to access it, but here's the info:
https://www.newstalk.com/listen-back
The Pat Kenny Show 12 May
Starts at 02:04:20 with a woman who has long covid
The bit I quote below is at about 02:22:00.

Here's what was said (disclaimer as this was done through brain fog):

[Interviewer Pat Kenny asks whether long covid is the same as ME or chronic fatigue or a post-viral syndrome of some kind?

Infectious Diseases Consultant Paddy Mallon is running the long covid clinic at a major Dublin hospital. He explains that he has 20 yrs of experience, that he sees a lot of ME cases, post-infectious fatigue etc, and says about long covid:]

For the sake of outsiders who might stumble on this forum, I'm going to post a couple of quotes about just how central to ME/CFS the concept of PEM is:

NICE 2021

In the draft NICE guidelines for ME/CFS due for publication in August 2021, PEM is one of four core symptoms that should lead clinicians to suspect ME/CFS:

IOM 2015

Post-exertional malaise is recognised as one of three core symptoms of ME/CFS in the Institute of Medicine’s 2015 report.

This is from the IOM's Clinicians' Guide:

Patient descriptions of PEM from the Institute of Medicine’s Clinicians’ Guide

Am too shattered to find and post links to either the draft NICE guidelines or IOM docs, but people on here will be able to point people towards them.

 

https://journaljammr.com/index.php/JAMMR/article/view/30916

There are a number of mentions of "chronic fatigue syndrome" or CFS in this paper, though I'm not sure it's that exciting.

Sample section:

 

ME is different because of X, where X is a common feature of ME is truly one of the most bizarre things I have seen. And so common. No doubt the relapsing-remitting pattern will also be prominently pointed out as a major difference.

And yeah he didn't misspeak, he actually said the hallmark feature of ME is not seen in ME. Imagine having 20 years of experience in something and being completely unaware of the most basic features. Seriously I can't.

 

Yup.

Some other tidbits that might be of interest, from the interview described above with Paddy Mallon, the Infectious Diseases Consultant:

He defined long covid simply as “failure to recover from an initial covid infection.”

He said that there were different groups within long covid [all my paraphrasing]:

1. Hospital patients with a slower recovery

2. Those who didn’t have a severe infection but don’t recover, and this second group* subdivides further into those with:

a) Fatigue

b) Fatigue plus specific symptoms with heart, breathing, chest pain, headache

c) Musculoskeletal symptoms arthralgias, arthritis

*I think this is what he meant, rather than that both 1 & 2 have a, b & c, but correct me if wrong. I’m guessing the hospital group would have had further subgroupings like organ damage, PTSD post-ICU etc.


The irony of my PEM over the coming days following listening to the radio programme, transcribing (hell on brain, no?) and writing these posts will not be lost on me.

 

U.S. News: In Long COVID, Advocates Battling Chronic Fatigue Syndrome See Allies, Hope

Another good quality article that goes into detail about the subject, particularly the fact that biomedical research into ME/CFS is seriously underfunded.

"Members of Congress have also taken note. At the same congressional hearing where Brooks and Collins spoke, Rep. Lori Trahan expressed concerns with the funding of ME/CFS research by the NIH.

"Dr. Collins, historically, research into clinical trials and treatments for ME/CFS has gone underfunded at NIH, leaving many patients to suffer physically," the Massachusetts Democrat said. She asked if some of the $1.15 billion might go toward ME/CFS research.

For his part, Collins defended the agency's approach to ME/CFS, pointing to its recent funding of the research centers and a data hub to delve into the condition.

"We have no less than four centers of excellence to work on CFS, our own intramural program at NIH has a big program bringing patients to our clinical center for intense study with CFS and the same investigators are now studying long COVID with the same mindset," he told Trahan. "So if there's an overlap between this, I think we're going to discover what that might be."​

Full article: https://www.usnews.com/news/health-...es-fighting-chronic-fatigue-syndrome-see-hope

 

Potemkin science. It's all façade. It exists to be pointed at so there is something to point at when people ask whether there is something.

Of all the things that are infuriating it's the endless stream of lies. They lie about us. They lie to us. They lie about what they lie about us. The process is supposed to follow the evidence and be based on truth. It isn't and that's why everything is broken. The process of rezoning an area is often more rigorous than this, certainly has more truth to it.

 

Moved post

https://www.usnews.com/news/health-...es-fighting-chronic-fatigue-syndrome-see-hope

 

New Italian study:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8108222/pdf/main.pdf

 

Free full text:
https://www.medscimonit.com/abstract/index/idArt/933015?
Editorial: The Pathogenesis of Long-Term Neuropsychiatric COVID-19 and the Role of Microglia, Mitochondria, and Persistent Neuroinflammation: A Hypothesis

George B. Stefano1
Pascal Büttiker1
Simon Weissenberger1,2
Anders Martin1
Radek Ptacek1
Richard M. Kream1

1 Center for Cognitive and Molecular Neuroscience, First Faculty of Medicine, Charles University in Prague, Prague,
Czech Republic

2 Department of Psychology, University of New York in Prague, Prague, Czech Republic

George B. Stefano, e-mail: gstefano@sunynri.org

Abstract

Persistent comorbidities occur in patients who initially recover from acute coronavirus disease 2019 (COVID-19)
due to infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2).

‘Long COVID’ involves the central nervous system (CNS), resulting in neuropsychiatric symptoms and signs, including cognitive impairment
or ‘brain fog’ and chronic fatigue syndrome.

There are similarities in these persistent complications between SARS-CoV-2 and the Ebola, Zika, and influenza A viruses.

Normal CNS neuronal mitochondrial function requires high oxygen levels for oxidative phosphorylation and ATP production.

Recent studies have shown that the SARS-CoV-2 virus can hijack mitochondrial function.

Persistent changes in cognitive functioning have also been reported with other viral infections.

SARS-CoV-2 infection may result in long-term effects on immune processes within the CNS by causing microglial dysfunction.

This short opinion aims to discuss the hypothesis that the pathogenesis of long-term neuropsychiatric COVID-19 involves microglia, mitochondria, and persistent
neuroinflammation.

Keywords: Editorial • Central Nervous System • Inflammation Mediators • Neuropsychiatry • Mitochondria • Microglia • Severe Acute Respiratory Syndrome Coronavirus 2 • COVID-19 • Cognitive Dysfunction

 

A sympathetic item on long covid on yesterday's TV4 Nyhetsmorgon, a morning tv programme in Sweden. Some clips are available to watch back online, for example this one (15 minutes long). Worth a watch!

https://www.tv4.se/klipp/va/13340355/16-000-drabbade-ar-en-minimisiffra-overlakaren-om-langtidscovid

A pediatrician with long covid and POTS, who has received specialist medical care and rehab for long covid, is interviewed. She talks about her experiences, symptoms over time (used to be too sick to watch tv or talk on the phone), how her life has changed etc. She will start working part time again next week, but she doesn't believe she will experience spontaneous remission seeing that she's been ill for so long.

Regarding the future, she says she doesn't believe the illness has improved as such, but she's feeling better thanks to the symptomatic treatments, and is able to do more now, and "her brain is back". She believes/hopes reserchers will find more effective treatments that target the root cause, maybe something immunomodulatory.

Doctor of infectious diseases Judith Bruchfeld, head of the long covid clinic at Karolinska University Hospital, talks about the importance of medical investigations and diagnostics, says that "jogging and long walks are explicitly wrong" for people like the pediatrician because "it makes you much worse", "it's incredibly important to have as good as possible diagnostics in order to offer correct rehabilitation and treatment with drugs". She says that one hypothesis is that long covid could be an auto-immune condition.

Of the 250 patients at their long covid clinic, about 40 have been diagnosed with POTS so far, plus there are 80 more ongoing investigations. Bruchfeld explains what a TILT test is and what happens in the body, symptoms, etc. She mentions what kind of drugs are available, for example to calm down the heart rate, to increase the power of the muscle, lessen brain fog etc.

Bruchfeld says they are teaching their patients pacing, which she describes as "to not overexert oneself mentally, and to do only one thing at a time, maybe one task a day".

She also talks about the rehab they offer in collaboration with physiotherapists, reclining exercises (a "project" that will be "evaluated", not sure if she means it's a research study?). The prognosis for covid triggered POTS is unknown, and for POTS due to other causes she says the prognosis is that about 50% recover spontaneously within 1-3 years.

Bruchfeld says that women are more at risk of long covid, and the average age among their patients is about 40, with POTS and other symptoms that substantially limit their ability to function.

Bruchfeld says that what we need now is resources, to be able to take care of the really large group of patients who still haven't received any help. The official number of people suffering from long covid in Sweden is 16 000, but she believes the real number is higher.

It was really good, definitely worth a watch

Although they sadly didn't mention ME at all, the bit about POTS was brilliant. I really really hope/wish all the "doubters" in my life were watching..!

I've read a lot of positive comments in the Swedish long covid groups, but also people expressing sadness and disappointment that they haven't been offered anything at all. Just like with ME, there are huge differences between the different regional healthcare systems.

I've also read a lot of sadness and frustration being expressed in the ME groups, mainly about the fact that they didn't mention ME at all, and that many people with long covid are being met with compassion, understanding and offers of both medical care and support, based on their identical-to-ME symptoms and POTS, while pwME are still left out in the cold.

Karolinska Institutet published an article about Bruchfeld in March, if you'd like to know more about her and her work:
https://ki.se/forskning/judith-bruchfeld-vill-forsta-langtidscovid

ETA: The KI article on Bruchfeld is available in English too:
https://ki.se/en/research/judith-bruchfeld-wants-to-understand-long-term-covid