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

[Kalliope]

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

 

[Kalliope]

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.

 

[Dolphin]

This is from Ireland

 

[borko2100]

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.

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.

 

[Dolphin]

Post-acute effects of SARS-CoV-2 infection in individuals not requiring hospital admission: a Danish population-based cohort study

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

Figure 4: Risks and risk ratios for receiving first hospital diagnoses 2 weeks to 6 months after a SARS-CoV-2 test in individuals not admitted to hospital

There was no increased risk for:

Fatigue-related disorders

It is expected that absolute risks of persisting symptoms such as dyspnoea or fatigue would be vastly underestimated, because only a fraction of individuals with these symptoms will be seen at a hospital. Still, the discrepancy between patient-reported symptoms10–12 and quantification of health-care encounters is important knowledge, because it might indicate that a presumably large share of patients with persisting symptoms after SARS-CoV-2 infection might have unmet health-care needs.

Also discussed here:

Increase in GP visits following mild COVID
Following infection, patients visit their GP 20% more and require additional medicines than those who never had the virus, new research identifies.

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

 

[rvallee]

The study findings underline the existence of PASC in children as an organic entity rather than one that is ‘all in the mind,’

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.

 

[rvallee]

This is from Ireland

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?

 

[Evergreen]

This is from Ireland

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:]

“This is something completely different...”

"As the research develops… it will be defined as a separate entity and classified as a separate entity."

“This concept of overdoing it for a day and then paying for it for a week is something that we don’t really see in a lot of the other chronic fatigue conditions, but it’s a real characteristic of this, especially in people like [patient featured earlier in programme] who have these tachycardias and these chest pains. So these are, there’s a definite difference in what’s going on here.”

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:

Post-exertional symptom exacerbation

The worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms typically worsen 12 to 48 hours after activity and can last for days or even weeks. This is also referred to as post-exertional malaise.


Post-exertional symptom exacerbation after activity that:

− is delayed in onset by hours or days

− is disproportionate to the activity

− has a prolonged recovery time lasting hours, days, weeks or longer

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:

Post-exertional malaise (PEM)

PEM is worsening of a patient’s symptoms and function after exposure to physical or cognitive stressors that were normally tolerated before disease onset. Subjective reports of PEM and prolonged recovery are supported by objective evidence in the scientific literature, including failure to normally reproduce exercise test results (2-day cardiopulmonary exercise test) and impaired cognitive function after exertion. There is sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS (SEID) from other conditions.

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

“crash,” “relapse,” “collapse” • mentally tired after the slightest effort • physically drained or sick after mild activity • the more demand-ing, prolonged, or repeated the activity, the more severe and prolonged the payback

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.

 

[Dolphin]

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

Health Complications in Patients Recovering from COVID-19: A Narrative Review of Post-COVID Syndrome

• Marcus Yu Bin Pai
  
• Andrew Seung Ho Park
  
• Bruno Fu Lon Chen
  
• Juliana Takiguti Toma
  
• Hong Jin Pai

Journal of Advances in Medicine and Medical Research, Page 115-129
DOI: 10.9734/jammr/2021/v33i1030916
Published: 8 May 2021

Abstract

Introduction: Due to the unprecedented health and economic complications resulting from COVID-19, the coronavirus pandemic is currently a leading global health concern. COVID-19 poses significant health risks, life-threatening clinical conditions, and even mortality in affected individuals. Several associated complications have also arisen as a result of COVID-19, including mass hospitalization, the need for invasive ventilation and intensive care unit (ICU) support, delayed recovery from infection, and post-recovery health issues. Furthermore, the pandemic itself has created enormous panic, which in turn affects the mental health of COVID-19 patients, individuals who have recovered from the disease, and the general population.


Just over a year has now passed since the beginning of the global COVID-19 pandemic and in this time, over 110 million individuals have been infected worldwide. Post-infection recovery times and long-term complications are now becoming more apparent. Especially physical and mental health complications arising from post-COVID-19-infection, which prevent a return to a healthy lifestyle and everyday routine remain a critical issue.


Objective: The primary objective of this narrative review is to address this clinically relevant issue and overview the health complications commonly observed in individuals who have recovered from COVID-19.


Methods: An investigation was performed on online databases for relevant articles from 2020 until January 2021. Key index words used in search were post-covid, myalgia, fatigue, pain.


Results: Fatigue, myalgia (i.e., muscle pain), sleep disruptions, and mental health issues (e.g., anxiety and depression) are among the most reported post-recovery symptoms in patients recovering from the disease. The etiology and potential management of these health complications are discussed, considering recently published findings from COVID-19 patients as well as previous studies focusing on complications arising from other related pandemics.


Conclusion: Patients who have recovered from COVID-19 should be evaluated for signs of fatigue, muscle pain, mental health difficulties, and sleeping difficulties regardless of disease severity. Based on this review of the literature, complete clinical and psychiatric evaluation, and the use of validated indicators of the severity of COVID-19 disease, symptoms are recommended to develop efficient health management approaches that meet patients' needs.

Keywords:

• COVID-19
  
• fatigue
  
• insomnia
  
• mental health
  
• myalgia

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:

3.1 Fatigue
Chronic fatigue syndrome (also termed myalgic encephalomyelitis) is a typical feature of most viral and bacterial infections [15]. A multidimensional physical issue related to shortness of breath, sleeping disorders, and psychological problems such as memory loss and “brain fog” [16], fatigue is a common problem experienced by patients with viruses similar to COVID-19 (e.g., SARS, Ebola; 37). For instance, 40.3% of patients who had recovered from SARS experienced CFS four years later [21]. High rates of post-viral fatigue have also been reported in patients recovering from Ebola virus infection [22].

Thus, it is not surprising that CFS is the most common symptom of COVID-19 [7,23-25]. Fatigue is experienced by a substantial percentage of individuals who have recovered from COVID-19 infection [24], with 71.0% to 87.4% of patients reporting fatigue or shortness of breath two–three months after full recovery from infection [25].

Despite the prevalence of fatigue symptoms throughout the clinical population, the etiology of fatigue in relation to COVID-19 infections remains largely unknown. Some studies have demonstrated that women are more prone to experiencing long-term fatigue following COVID-19 recovery [23]. Patients with co-existing depression or anxiety also suffer from post-COVID fatigue longer than healthy individuals without psychiatric conditions [15,26]. As mentioned above, breathlessness or shortness of breath has been identified as a significant cause of fatigue [27] and is also related to the need for ICU admission and respiratory assistance, comorbid lung conditions, older age, and obesity [28].

There is currently no evidence assessing the potential direct associations between acute COVID-19 severity and fatigue after recovery from COVID-19 [24]. There is also a lack of research on inflammation markers, changes in cell counts, and pro-inflammatory agents with post-COVID-19 fatigue [28]. These are important research areas because central factors such as neurotransmitter levels, inflammation, and intrinsic neuronal excitability might contribute to COVID-19 fatigue [23]. Recent evidence shows that SARS-CoV-2 can enter nerve cells and the central nervous system, provoking a virus-mediated immune response [29].

One particular avenue that might prove fruitful for researchers and health care professionals relates to a recent hypothesis that CFS may be caused by olfactory neuron impairment, resulting in lower cerebrospinal fluid outflow through the cribriform and subsequent flooding of the glymphatic network of the central nervous system [11]. As such, cerebrospinal fluid drainage has been recommended for patients with post-infection CFS to reinstate glymphatic transport and waste elimination throughout the central nervous system, although further research is needed to validate these recommendations. Investigations into the cytokine networks of patients recovered from COVID-19 are also necessary to evaluate the role of protein disruptions associated with both post-infectious CFS and COVID-19 (including Interleukin-2 and interferon-γ inducible proteins) in long-term fatigue [15].

 

[rvallee]

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.

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.

 

[Evergreen]

he actually said the hallmark feature of ME is not seen in ME.

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.

 

[Wyva]

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

 

[rvallee]

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."

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.

 

[Louie41]

Moved post

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

 

[Dolphin]

New Italian study:

"Persistent gastrointestinal symptoms and chronic fatigue after SARS-COV-2 infection"

"The results...show that abdominal pain/discomfort, diarrhea and chronic fatigue persist after SARS-CoV-2 infection in a significant proportion of patients"

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

 

[Dolphin]

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

 

[mango]

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

 

[mango]

ME was briefly mentioned 53 minutes in, in this webinar on long covid (5 May 2021), hosted by Uppsala University, Sweden.



(Nothing new or important, but I felt it was still worth sharing simply because ME is so rarely mentioned in long covid discussions in Sweden, especially by the Swedish Covid Association.)

Petter Brodin is a doctor/researcher. Åsa K Hedlund is the chairperson of the Swedish Covid Association.

Eva has sent in a comment, about when we talked about chronic fatigue and ME. She writes: "It's sad that ME is seen as just fatigue. It's energy deficiency at the cellular level, and all the symptoms listed of postcovid. ME is not fatigue."

Petter Brodin:
We have studied ME in my research group quite a lot, and I agree that there are great similarities between what we see now in patients with long covid symptoms and what previous ME patients have suffered from. Whether they are the same disease or variants, whether they are cousins of each other, that remains to be seen. But there is definitely a lot of overlap. And ME is also a disease that is quite often triggered by infections, such as glandular fever, influenza and the like. So the links here are obvious.

Åsa K Hedlund:
I think the thing with ME is, we do not exclude that there is at least a subgroup that may suffer from something similar to ME among the long haulers. But what we think we have to consider here is that we now have a unique situation. We have an enormous number of people who have come down with the same illness at the same time. This means that we have completely different conditions for conducting research on this group of patients. The ME group itself is also very..., they may have got it from very many different things. So we think that if we study this issue in depth, we are in the best position to find patterns and find things in the statistics that are relevant to take further. And then you might also find keys to other post-infectious conditions.

Translated with www.DeepL.com/Translator (free version)

 

[mango]

Some excerpts from an article about the long covid clinics in Skåne (the southermost region of Sweden), an area where BPS proponents have had/still have a lot of influence regarding ME.

”Vi är ju otroligt många som är sjuka med liknande symptom”
https://www.sydsvenskan.se/2021-05-15/varden-borjar-komma-pa-plats-for-virusets-ovantade-spar

Both in Lund and Malmö, the specialist clinics opened on 1 March and are now fully booked until the summer, with patients from all over Skåne. Soon, clinics will also open in Ängelholm and Hässleholm. [...]

- I have been lucky, unlike many others. My family doctor has never doubted that I had covid-19, and he has always tried to help me move forward. I've had good basic support at the health centre, but there was nowhere to refer until now. [...]

Postcovid, or long-term covid, has been debated both generally and in medical circles, and there are views that it is a "cultural disease" or an expression of other exhaustion. Ester Nerfont has also encountered some of this mistrust, although it is diminishing now that more studies are coming out about the patient group and the prolonged symptoms.

- But I've been told: you didn't even have a positive test. Some people wonder if I'm really sick, or if I'm just not coping with the pressure. [...]

The fast-growing patient associations for long covid or post-covid have long called for specialist clinics to be set up in Skåne as well. As recently as November, there were no plans to do so in Region Skåne. Primary care can handle patients who have not been hospitalised with covid-19, was the message from regional councillor Gilbert Tribo (L). Nevertheless, there are now two clinics for postcovid at Sus, on a small scale.

- The initiative came from us, we saw the need and the patients have been there since last spring, says Malin Inghammar, section head at the infection clinic in Lund. She is also chair of a steering group for postcovid care, with representatives from all over Skåne. [...]

- What can be done, is there any treatment?
A side effect of Covid called POTS, pulse racing when standing upright, can be treated with medication.
- Besides that, there is physiotherapy that you can try and fatigue management, learning to live with limitations and manage energy, says [infectious diseases specialist] Per Åkesson.

ME is not mentioned, however there's this:

- I try to instil hope: all previous experience shows that post-viral symptoms heal. Even though this seems to be more serious and affect more people right now, they can keep that in mind," says Per Åkesson

 

[Wyva]

Psychology Today: COVID-19, Chronic Fatigue Syndrome, or Both?

Long-COVID syndrome and its impact on how we perceive and research CFS.

​

I'm still quite brain-fogged but I couldn't find anything pointing to any BPS agenda in the article, it seems to just simply state the possibility of the connection. I looked up the author: he seems to be a rheumatologist actually.

"But maybe the long-haulers are typical ME/CFS patients, just ones who have a little bit more for the provider to ponder about. After all, previous ME/CFS research had indicated a 10% rate of symptoms persisting at least a year following a variety of infections. If you believe that ME/CFS is the result of an infection, and considering the ongoing COVID-19 pandemic, the ME/CFS world could see tens of millions added to its ranks.

The NIH recognizes the gravity and science’s responsibility here, and it is hoped that knowledge gained through research on “Long COVID syndrome” may also positively impact the understanding, treatment, and prevention of ME/CFS and other chronic diseases."​

Full article: https://www.psychologytoday.com/ca/...105/covid-19-chronic-fatigue-syndrome-or-both