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

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COVID-19 Syndrome and Chronic Fatigue Syndrome (ME/CFS) following the first pandemic wave in Germany: a first analysis of a prospective observational study

Abstract

Objective: Characterization of the clinical features of patients with persistent symptoms after mild to moderate COVID-19 infection and exploration of factors associated with the development of Chronic COVID-19 Syndrome (CCS).

Methods: Setting: Charite Fatigue Center with clinical immunologists and rheumatologist, neurologists and cardiologists at Charite University hospital. Participants: 42 patients who presented with persistent moderate to severe fatigue six months following a mostly mild SARS-CoV-2 infection at the Charite Fatigue Center from July to November 2020.

Main outcome measures: The primary outcomes were clinical and paraclinical data and meeting diagnostic criteria for Chronic Fatigue Syndrome (ME/CFS). Relevant neurological and cardiopulmonary morbidity was excluded.

Results: The median age was 36.5, range 22-62, 29 patients were female and 13 male. At six months post acute COVID-19 all patients had fatigue (Chalder Fatigue Score median 25 of 33, range 14-32), the most frequent other symptoms were post exertional malaise (n=41), cognitive symptoms (n=40), headache (n=38), and muscle pain (n=35). Most patients were moderately to severely impaired in daily live with a median Bell disability score of 50 (range 15-90) of 100 (healthy) and Short Form 36 (SF36) physical function score of 63 (range 15-80) of 100. 19 of 42 patients fulfilled the 2003 Canadian Consensus Criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). These patients reported more fatigue in the Chalder Fatigue Score (p=0.006), more stress intolerance (p=0.042) and more frequent and longer post exertional malaise (PEM) (p= 0.003), and hypersensitivity to noise (p=0.029), light (p=0.0143) and temperature (0.024) compared to patients not meeting ME/CFS criteria. Handgrip force was diminished in most patients compared to healthy control values, and lower in CCS/CFS compared to non-CFS CCS (Fmax1 p=0.085, Fmax2, p=0.050, Fmean1 p=0.043, Fmean2 p=0.034, mean of 10 repeat handgrips, 29 female patients). Mannose-binding lectin (MBL) deficiency was observed frequently (22% of all patients) and elevated IL-8 levels were found in 43% of patients.

Conclusions: Chronic COVID-19 Syndrome at months 6 is a multisymptomatic frequently debilitating disease fulfilling diagnostic criteria of ME/CFS in about half of the patients in our study. Research in mechanisms and clinical trials are urgently needed.
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Thread on this study here:
https://www.s4me.info/threads/prepr...n-germany-kedor-et-al-2021.19076/#post-323407
 
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Long-Haul COVID Cases Cast New Light on Chronic Fatigue Sufferers

Beginning in the 1980s, many doctors treating ME/CFS prescribed a combination of cognitive behavioral therapy and an exercise regimen based on a now discredited assertion that the illness had no biomedical origin. That approach proved ineffective — patients often got demonstrably worse after pushing beyond their physical limits. It also contributed to a belief within the medical establishment that ME/CFS was all in your head, a narrative that has largely been refuted.

“ME/CFS was never a mostly behavioral problem, although it has been cast as that,” Rowe said.

Answers have been slow to arrive, but attitudes about the illness are beginning to change. Advocates of patients point to a 2015 report by the Institute of Medicine that called ME/CFS “a serious, chronic, complex, systemic disease” and acknowledged that many doctors are poorly trained to identify and treat it. The CDC says as many as 90% of the estimated 1 million U.S. patients with ME/CFS may be undiagnosed or misdiagnosed.
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https://www.cancerhealth.com/article/longhaul-covid-cases-cast-new-light-chronic-fatigue-sufferers
 
Don't know whether this was posted before or not. Has a few mentions of ME/CFS.

https://www.journaljammr.com/index.php/JAMMR/article/view/30781

Post COVID-19 Syndrome: A Literature Review
  • Ankita Kabi
  • Aroop Mohanty
  • Ambika Prasad Mohanty
  • Subodh Kumar
Journal of Advances in Medicine and Medical Research, Page 289-295
DOI: 10.9734/jammr/2020/v32i2430781
Published: 31 December 2020


Abstract

The COVID-19 pandemic shook the entire world in January 2020 last year and is still posing a major threat to the entire humanity. A lot of studies have been conducted studying the diagnosis and management of the disease caused by this highly contagious virus, but less is known about the Post COVID-19 sequelae. There is very limited evidence about the management of COVID-19 after the first three weeks of illness. About 10% of the patients experience prolonged illness after COVID-19. Treatment is mainly focused on reassurance, self-care, and symptomatic control. There are currently no FDA-approved treatments specifically for this condition. Clinicians and researchers have focused on the acute phase of COVID-19, but continued monitoring after discharge for long-lasting effects is needed.

Keywords:
  • Post COVID-19 syndrome
  • long COVID
  • SARS-CoV-2 virus
  • RT-PCR.
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Doesn't look great on a quick skim:

https://www.researchgate.net/public...-19'_The_Long-term_Complications_and_Sequelae

REVIEW ARTICLE
Living with ‘Long COVID-19’:
The Long-term Complications and Sequalae
Dr Vinod Nikhra
Affiliation:
Senior Chief Medical Officer and Consultant
Department of Medicine, Hindu Rao Hospital
& NDMC Medical College, New Delhi, India.
ORCID ID: https://orcid.org/0000-0003-0859-5232
ABSTRACT

INTRODUCTION - THE PERENNIAL PANDEMIC:

It is being increasingly realised that the Covid-19 may have become the new reality associated with human existence world over and the mankind may have to live with it for years or even decades. Further, the grievous nature of the disease is evolving further with the genomic changes in the virus in form of mutations and evolution of variants, with enhanced infectivity and probably virulence. There are serious challenges posed by the SARS-CoV-2 virus and COVID-19 as the disease.


COVID-19 AS ACUTE AND CHRONIC DISEASE:

On exposure to the SARS-CoV-2 virus, not all patients develop a disease. Further, for those who develop the disease, there is a large variation in disease severity. The known factors including the constituent factors and several still unknown factors may influence the disease manifestations, its course, and later the convalescent phase as well. In fact, there is a growing evidence of persisting multisystem effects of Covid-19, indicating substantial continuing morbidity after resolution of the infection.

THE ‘LONG COVID-19’ OR ‘LONG HAULERS’:

The patients who continue to suffer with persisting symptoms have been described as long haulers and the clinical condition has been called post-COVID-19 or ‘long COVID-19’. The diagnosis should be entertained if various symptoms and signs linger well beyond the period of convalescence in COVID-19. With the chronicity, there occur inflammatory changes and damage in lungs, heart, immune system, brain, the vasculature, and other organs, and the extent of organ damage determines the long-term effects.

MANAGEMENT OF ‘LONG COVID’ SYNDROME:

The ‘long Covid’ syndrome has multi-system involvement, variable presentation and unpredictable course depending on known factors such as race, age, sex, and comorbidities, and certain unknown factors. Following clinical and investigational assessment, the patients should be managed as per clinical manifestations, extent of organ damage and associated complications. The findings from various studies indicate that preventing further organ damage in ‘long Covid’ is crucial.

THE LONG COVID’S PROGNOSTIC CHALLENGES:

As apparent, the ‘long Covid’ afflictions are more common than realised earlier. The symptoms can escalate in patients with co-morbid conditions. The persistent symptoms among COVID-19 survivors pose new challenges to the healthcare providers and may be suitably managed with a combination of pharmacological and non-pharmacological treatments, and holistic healthcare. In addition, by reducing the inflammation and continuing damage in various organs, the prognosis can be improved.

KEYWORDS
COVID-19, Long Covid, Long haulers, Post-Covid myocarditis, Pulmonary fibrosis, Brain fog, Chronic fatigue syndrome, Brain fog, Holistic care.
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leokitten said:
Newsweek has long gone down the drain when it comes to political news reporting, so forgive me but this article is relevant. They mention LC ME/CFS relationship too and feature NINDS.

Newsweek Magazine:
COVID-19 Could Increase Dementia, Other Brain Disorders for Decades to Come
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Pretty good. It's really fortunate that this happened at the tail end of years of efforts. Even though those efforts were not accomplishing anything, it set the stage for the NIH to be the only serious player. So far I have seen nothing elsewhere that doesn't reek of BPS, though most countries aren't even trying and clearly waiting on the NIH to do all the work. Medicine is so insular, hardly any cooperation going on.

If cognitive dysfunction continues to be treated with the respect I have seen so far and reported here, it would change everything. Even if nothing else improves, if we could have our wits back, we would be able to do all the things we currently cannot do, we would be able to fight on even ground, to defend ourselves personally with physicians, to effect change locally and to bring about global efforts.

It's seriously weird that medicine paid zero attention to this until now. It shows how dysfunctional it is to cede ground to psychology in medicine, all it ever accomplishes is cause harm and impair progress.
 
The administrators of Sweden's largest(?) support group for people with covid and long covid on Facebook published a new FAQ/help post last week. I won't share too much since it's a private group, but I thought you might be interested to know that their first recommendation is GET.

They describe GET as "a well-established rehabilitation method for other diseases", and claims that "it works for some long-term ill people". They don't cite any sources, but refer to Sveriges Arbetsterapeuter (the Swedish Association of Occupational Therapists) for advice on how to apply the method.

They recommend pacing as well (referring to a study called Management of post-acute covid-19 in primary care), and -- in the paragraph about pacing -- mention that GET might make some people worse. They also stress the importance of having patience, listening to the body, avoiding over-exertion etc.

The post was written by a person who is on the board of the Swedish Covid Association. The association is currently developing a folder/info material, so it will be "interesting" to see if GET will be the first recommendation there too.
 
Andy said:
A great video conversation from "Long Covid Physio" and Canadian researcher Simon Décary.

"Simon Décary is Assistant Professor of Physiotherapy within the Patient-Oriented Rehabilitation Lab (SPOR-REHAB), University of Sherbrooke, Quebec, Canada. Simon's background is researching shared decision making in healthcare. He was awarded the only funding in Canada to study Long Covid rehabilitation interventions. In this podcast Simon shares the incredible journey from initial study design and huge learning curve the team have been through, leading them to stop, reflect, learn, and change the study objectives and interventions. Simon shares his honest and transparent reflections of how working with people living with Long Covid and ME/CFS advanced this research study for the better."

Identifies the limitations of the Chalder Fatigue Scale, including the ceiling effect, issues with the PACE trial, Cochrane review, and how his study on exercise rehab for Long Covid turned into a trial of pacing following feedback from Long Covid and ME patients.
Code: 
https://youtu.be/3uf-TT9bzNI



Also available as a podcast from various providers, details here https://longcovid.physio/podcast
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Hour long video/podcast where they both acknowledge the help and assistance that has been given to Long Covid patients by the ME/CFS community.
The timings of the best excerpts are within the tweet.


 
Physical Therapists Living With Long COVID, Part 2: When "Keep Pushing" Isn't the Answer
Long-COVID Rehabilitation: Stop. Rest. Pace.
Current guidance cautions against graded exercise therapy for people living with long COVID, following reports of adverse effects from exercise in people living with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS).8,18 Rehabilitation is indicated, because it focuses on health and functioning in everyday life,19 not simply exercise prescription alone.16 We advocate for a risk-stratification approach to rehabilitation involving exercise interventions in long COVID, with particular focus on associated risks of exercise with postexertion malaise17 and potential cardiac involvement.14

We welcome guidance and support from the ME/CFS communities, including rehabilitation professionals (Twitter: @PhysiosForME, @PTOT4MECFS), as there are similarities in presentation between ME/CFS and long COVID. It would not be appropriate to currently attribute all long COVID symptoms to ME/CFS without further knowledge on the cause, course, and stratification of long COVID. Additionally, a subpopulation of people with long COVID reporting significant fatigue do not meet ME/CFS criteria, warranting further investigations into fatigue mechanisms.6

Translating effective self-management rehabilitation strategies from ME/CFS has supported our experiences and recoveries living with long COVID. This includes learning to #StopRestPace. We must focus on resting from any physical, cognitive, mental, or emotional exertion; effective pacing1,3,7; and heart rate monitoring15 to limit and manage symptoms exacerbated by exertion.10 We are all eager to return to living an active lifestyle. However, when we are feeling relatively well (the boom), it is difficult to avoid over activity, which is followed by reduced functioning when symptoms are exacerbated by exertion (the bust). Navigating these boom-bust cycles has become a frequent experience when living with an episodic and unpredictable disability.
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https://www.jospt.org/do/10.2519/jospt.blog.20210210/full/

 
Given this was written by a psychiatrist, I had low expectations but I thought it was thoughtful enough; it was just a pity it suggested exercise and the like
—-
Source: Psychiatry & Behavioral Health Learning Network
Date: February 10, 2021
Author: Holly Hendin
URL:
https://www.psychcongress.com/article/post-covid-syndrome-psychiatric-clinic


Post-COVID Syndrome in the psychiatric clinic
---------------------------------------------
Addressing the Unique Challenges of the Post-COVID Patient
 
As I see it when covid started and the first LC people appeared with symptoms it was always going to be unclear how to proceed. While I think most have stepped back from vigourous exercise and now stress an approach like this one:

mango said:
They recommend pacing as well (referring to a study called Management of post-acute covid-19 in primary care), and -- in the paragraph about pacing -- mention that GET might make some people worse. They also stress the importance of having patience, listening to the body, avoiding over-exertion etc.
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The problem is not knowing who will go on to recover naturally and who will not. Without this biological data exercise will not be seen as problematic when some people do recover.
 
I am getting increasingly worried by the constant use of PEM as a symptom of longcovid. They do not define it anywhere so I think it most likely they are talking about malaise after exercise. "I feel bad when i exercise". the BPS people have been trying to change PEM to mean this.

The original wording for ME was an abnormal response to exercise i.e. not the response to exercise you would expect so getting breathless and fatigued when you have a post viral or have had lung damage or heart problems is the expected response. The CDC with the fukuda definition (helped by Michael Sharpe) made this optional and gave it an ambivalent name.

The point about our "PEM" is that we get unexpected things when we exercise. There is often a delay in any problem, there are immune symptoms, rest does not help and it can take days or weeks to get back to the original point. Mental effort causes physical symptoms and vice versa.

It may be that lots of longcovid people get the same PEM as us but we don't know. This confision may be why Paul Garner thought he fit the definition for CCC
 
Mij said:
Maybe it's just me, but I want to distance myself from LC at this point.
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Def not me..
I think post covid ME, and ME itself will be the AIDS of the next decade in terms of research attention. I can’t think of a more explosive positive change to happen to our disease. I expect the 1.15B for NIH will open up a whole new field of research..
 
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