Long Covid: Summary of discussions

lenora

Senior Member
Messages
3,502
Likes
6,016
Dahsar, I'd love to read the article but my "free time" has expired. What is the jest of the article? I assume that people with COVID may not be recovering. Personally, I feel that we've now entered the world of Chronic Immune Dysfunction" as one disease after another leaves people in the same state. However, I would like to know exactly what was in the article or at least a peek at what was meant. Thanks! Yours, Lenora.
 

lenora

Senior Member
Messages
3,502
Likes
6,016
A blog by Francis Collins, head of the NIH:

NIH: Trying To Make Sense of Long COVID Syndrome
https://forums.phoenixrising.me/threads/nih-trying-to-make-sense-of-long-covid-syndrome.82665/
Hello @Pyrrhus....perhaps we should just referring to ourselves as Long Haulers, an apt description as many of us have been victims for a long haul. May get a little more respect than ME/CFS (oh, by the way I talked to an RN the other day, who had never heard of either ME or CFS. Long Haulers is a name this generation would remember). I hope you're doing alright. Yours, Lenora.
 

ljimbo423

Senior Member
Messages
4,555
Likes
12,229
Location
United States, New Hampshire
Great article dahsar! Sounds exactly like ME/CFS. From the article-

These patients have labeled themselves “Covid long-haulers.” What they’re suffering from, they say, is “long Covid.”

As a group, they report a strange hodgepodge of symptoms, including fatigue, pain, shortness of breath, light sensitivity, exercise intolerance, insomnia, hearts that race inexplicably, diarrhea and cramping, memory problems and a debilitating “brain fog” that can at times make it hard to put a cogent sentence together.
Some patients, including a few doctors and nurses, can no longer work, because they are too fatigued or have trouble focusing. Others have lost their jobs but can’t get disability benefits because, subjective reports of misery aside, doctors can find nothing wrong with them.
Zijian Chen estimates that about 10 percent of Covid-19 patients end up developing symptoms that persist for months and months — a number that would equate to roughly 100,000 chronically sick people in New York State alone.
For many doctors, the strange symptomology of long Covid calls to mind another mysterious, poorly understood condition: myalgic encephalomyelitis, more familiarly known as chronic fatigue syndrome.

ME/CFS, as it is often abbreviated, is defined by the presence of certain symptoms, including debilitating fatigue and unrefreshing sleep, that last for six months or longer. ME/CFS-like syndromes have been linked with infections for more than a century — including, most recently, those caused by the viruses responsible for the SARS and H1N1 pandemics in 2003 and 2009.

Chiefly because of this association, several ME/CFS experts told me that they anticipate a wave of new patients — long-haulers who, because their symptoms are severe enough and last for six months or longer, will essentially be ME/CFS patients whether they receive the diagnosis or not.
I’m expecting to see an increase that could generate as many new cases over the next two to three years as exist already in the U.S.,” says Anthony Komaroff, a physician at Brigham and Women’s Hospital in Boston who has treated ME/CFS for decades.

In other words, as many as 2.5 million additional people could become afflicted with a disorder that some have argued causes more illness and suffering than H.I.V. “It’s not death,” Komaroff told me. “But might it be a fate worse than death for some people? It’s possible.”
 

lenora

Senior Member
Messages
3,502
Likes
6,016
@Jim....Thanks for the excerpt from the NYT. Another illness that seems to fall under that heading is the Ebola Virus.

We had two nurses here in Dallas affected by it. One recovered without any problems...even went shopping for her wedding gown while suffering from it. She later returned to work. The other has been grossly affected and will probably never work again. Both were quite young, under 30. This was a particularly difficult case and the first case of Ebola in our country. The hospital didn't provide adequate protective clothing.

Who knows what makes the difference? It would seem likely that the number of viruses we've had, or the particular virus is at the root of the problem, but who really knows? I hope you're OK. Yours, Lenora.
 

BrightCandle

Senior Member
Messages
644
Likes
2,347
Treating Long COVID: Clinician Experience with Post-Acute COVID-19 Care
https://emergency.cdc.gov/coca/ppt/2021/012821_slide.pdf
"Pacing of exercise: low-impact, short duration exercise with gradual increase. "

- Icahn School of Medicine at Mount Sinai

One place not to go with ME/CFS or long covid!

Generally they have nothing interesting coming out on the tests (just like ME/CFS) and only one of them even suggests that it could be ME/CFS. The treatments look mighty similar for the various parts of the condition, they presumably work about as well as they do for most of us, very poorly if at all.
 

lenora

Senior Member
Messages
3,502
Likes
6,016
Hello @BrightCandle....I assume you've had COVID and are still having side-effects. I'm sorry, as I hate to see anyone join our parade.

I've had ME/CFS/FM for way over 35 yrs. now...ME before that. I agree that exercise is definitely "set-back territory" for most of us. Yours, Lenora
 
Last edited by a moderator:

Pyrrhus

Senior Member
Messages
3,916
Likes
11,892
Location
U.S., Earth
It's hard to keep up with all the Long Covid developments, but here's a brief summary:


Living with Covid19 (15 October 2020)
A report on Long Covid from the UK NIHR government health authority
https://evidence.nihr.ac.uk/themedreview/living-with-covid19/

Multi-organ impairment in low-risk individuals with long COVID (16 October 2020)
A description of possible organ damage in Long Covid
https://www.medrxiv.org/content/10.1101/2020.10.14.20212555v1.full.pdf (not peer-reviewed)
A001A80D-7D9E-416E-AAC9-A4C6140796BE.jpeg

https://drive.google.com/file/d/15Z1pPMsTvxKe_eJtNG3XyXNxx9gB2xxU/view

Re: Virology, transmission, and pathogenesis of SARS-CoV-2 ; comparison of post viral symptoms in previous outbreaks. (30 October 2020)
A letter by ME doctor Derek Enlander, comparing Long Covid, Post-SARS syndrome, and ME
https://www.bmj.com/content/371/bmj.m3862/rr-1

Taking pandemic sequelae seriously: from the Russian influenza to COVID-19 long-haulers (31 October 2020)
An historical comparison of Long Covid with conditions from other viral epidemics
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)32134-6/fulltext

Late Sequelae of COVID-19 (13 November 2020)
A report on Long Covid from the US CDC government health authority
https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/late-sequelae.html

Role of mitochondria, oxidative stress and the response to antioxidants in myalgic encephalomyelitis/chronic fatigue syndrome: A possible approach to SARS-CoV-2 ‘long-haulers’? (21 November 2020)
An article by Warren Tate and colleagues
https://www.sciencedirect.com/science/article/pii/S2095882X20300839

The Kids Are Not Alright: A Preliminary Report of Post-COVID Syndrome in University Students (29 November 2020)
An article emphasizing that youth are also affected by Long Covid
https://www.medrxiv.org/content/10.1101/2020.11.24.20238261v2 (not peer-reviewed)

Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome (November 2020)
An article by Lawrence Afrin, Gerhard Molderings, and colleague.
https://www.sciencedirect.com/science/article/pii/S1201971220307323

Long-term COVID-19 symptoms in a large unselected population (1 December 2020)
An analysis of Long Covid symptoms
https://www.medrxiv.org/content/10.1101/2020.10.07.20208702v3 (not peer-reviewed)

Attributes and predictors of Long-COVID: analysis of COVID cases and their symptoms collected by the Covid Symptoms Study App (19 December 2020)
Another analysis of Long Covid symptoms
https://www.medrxiv.org/content/10.1101/2020.10.19.20214494v2 (not peer-reviewed)

6-month consequences of COVID-19 in patients discharged from hospital: a cohort study (16 January 2021)
A Chinese study of Long Covid in people from Wuhan, China
https://www.thelancet.com/journals/lancet/article/PIIS0140-67362032656-8/fulltext

Preliminary Evidence on Long COVID in children (January 26, 2021)
An analysis of Long Covid symptoms in children
https://www.medrxiv.org/content/10.1101/2021.01.23.21250375v1 (not peer-reviewed)
 
Last edited:

Pyrrhus

Senior Member
Messages
3,916
Likes
11,892
Location
U.S., Earth
A common question people ask is:
"What percentage of people who are infected with the novel coronavirus will end up with Long Covid?"

Many people think it's around 10%, based one some studies that attempted to answer this question.

But these studies often have significant limitations:
  • Different studies use different definitions of Long Covid.
  • We don't know how many people have asymptomatic infections.
  • Not everyone was tested when they first fell ill.
  • Not everyone who fell ill sought medical attention.
  • Most studies only look at hospitalized patients.
----------------------------

So here's a study that took a different approach. It was conducted in the Faroe Islands, which are remote islands with a small population. These islands had an intensive testing regime which, hopefully, caught most of the cases of infection.

Long COVID in the Faroe Islands - a longitudinal study among non-hospitalized patients (Petersen et al, 2020)
https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciaa1792/6012625

Main Points:
  • Everyone who tested positive in March/April 2020 were invited to participate in the study.
  • 180 people took part in the study, and only 8 of those had been hospitalized, with no fatalities.
  • 4.4% were completely asymptomatic during the acute phase, while 7.2% reported only 1-2 symptoms.
  • 53.1% had at least one persistent symptom after about four months.
  • 19.4% reported 3 or more symptoms after about four months.
  • 8.9% reported severe symptoms after about four months.
  • The most commonly reported persistent symptoms were fatigue, loss of smell/taste, and joint pain.
  • People who reported more acute symptoms were more likely to report persistent symptoms.
  • 1% of people were asymptomatic in the acute phase but reported persistent symptoms later on.
  • Older people tended to be more likely to report persistent symptoms.
  • No gender differences were found.
Excerpt:
Petersen et al 2020 said:
Background
Little is known about long-term recovery from COVID-19 disease, especially in non-hospitalized individuals. In this longitudinal study we present symptoms registered during the acute phase as well as long COVID, i.e. long-lasting COVID-19 symptoms, in patients from the Faroe Islands.

Methods
All consecutive patients with confirmed RT-PCR testing from April to June 2020 were invited to participate in this study for the assessment of long COVID. Demographic and clinical characteristics and self-reported acute and persistent symptoms were assessed using a standardized detailed questionnaire administered at enrollment and at repeated phone interviews in the period 22 th April to Aug 16 th.

Results
Of the 180 participants (96.3% of the 187 eligible COVID-19 patients), 53.1% reported persistence of at least one symptom after a mean of 125 days after symptoms onset, 33.3% reported one or two symptoms and 19.4% three or more symptoms. At the last follow-up, 46.7% were asymptomatic compared with 4.4 % during the acute phase. The most prevalent persistent symptoms were fatigue, loss of smell and taste, and arthralgias.

Conclusions
Our results show that it might take months for symptoms to resolve, even among non-hospitalized persons with mild illness course in the acute phase. Continued monitoring for long COVID is needed.
 

Pyrrhus

Senior Member
Messages
3,916
Likes
11,892
Location
U.S., Earth
...and just for comparison:


Menges et al 2021 said:
Estimating the Burden of Long COVID in the Canton of Zurich: Implications for Healthcare Service Planning

Dominik Menges, Tala Ballouz, Alexia Anagnostopoulos, Hélène E. Aschmann, Anja Domenghino, Jan S. Fehr, Milo A. Puhan

Background: As of January 2021, more than 500'000 individuals have been diagnosed with SARS-CoV-2 in Switzerland and up to 1.5 million are estimated to have been infected. In addition to the acute healthcare burden of COVID-19, evidence is emerging on individuals experiencing protracted symptoms and complications after infection, such as fatigue as well as respiratory, neurological, cognitive and mental health issues. It is yet unclear how many persons are affected by Long COVID and what the needs of those suffering from Long COVID are as well as what the implications are for the Swiss healthcare system. Our study aimed to assess the prevalence of Long COVID among SARS-CoV-2 infected individuals in the Canton of Zurich to identify needs for healthcare planning in Switzerland.

Methods: In the population-based Zurich SARS-CoV-2 Cohort study, we invited all contactable adults with PCR-confirmed SARS-CoV-2 infection between 27.02. and 05.08.2020 in the Canton of Zurich. We surveyed participants on their acute illness as well as their symptoms and health status at approximately 6 months after infection. We descriptively analyzed the proportion of individuals whose health status is still impaired, as well as Fatigue Assessment Scale (FAS), Depression and Anxiety Symptom Scale (DASS-21) and mMRC dyspnea scale scores at 6 months after diagnosis.

Results: We enrolled 437 SARS-CoV-2 infected individuals. Median age of participants was 48 years and 51% were female. Symptoms at diagnosis were reported by 90% of participants, of which 16%, 40%, 30% and 13% reported mild, moderate, severe and very severe symptoms, respectively. 20% of participants were hospitalized within two weeks of the infection. At 6 months, 26% reported not having returned to their normal health state; 31% among males and 21% among females. Furthermore, 23% among the non-hospitalized and 39% among the hospitalized reported not having fully recovered. Half of the participants reported at least one general practitioner visit post-infection. 54% of participants had fatigue in the FAS, and 26% and 32% had DASS-21 scores indicating depression and anxiety, respectively. One fourth had grade 1 dyspnea or higher based on mMRC scores.

Discussion: Our results show that a relevant proportion of individuals suffer from longer-term consequences after SARS-CoV-2 infection. The proportion of individuals with Long COVID may be overestimated due to underdetection of mild cases during the first wave. But a relevant absolute number of affected individuals, ranging up to several hundred thousand persons in Switzerland is to be expected, who suffer from mild to severe symptoms months after the infection. Our findings indicate that a wide range of healthcare services and integrative approaches will be required to support the recovery of these individuals. Alongside measures to mitigate the spread of SARS-CoV-2, the early planning of resources and tailored services for those suffering from Long COVID will be crucial for reduce the burden from Long COVID.
Source: https://www.corona-immunitas.ch/en/program/studies/e7-zurich-coronavirus-cohort-study/
 
Last edited:

Pyrrhus

Senior Member
Messages
3,916
Likes
11,892
Location
U.S., Earth
Carmen Scheibenbogen, an ME researcher from Germany, pre-published a study on Long Covid patients roughly 6 months after their infection:

Chronic COVID-19 Syndrome and Chronic Fatigue Syndrome (ME/CFS) following the first pandemic wave in Germany – a first analysis of a prospective observational study (Kedor et al., 2021)
https://www.medrxiv.org/content/10.1101/2021.02.06.21249256v1 (not yet peer-reviewed)

Main points:
  • They looked at 42 patients with moderate to severe fatigue six months following a mostly mild infection.
  • 29 patients were female and 13 male.
  • Although 41 out of 42 patients had PEM, only 19 of them fulfilled the 2003 Canadian Consensus Criteria for ME.
Discussion:
https://forums.phoenixrising.me/thr...rmany-scheinbogen-et-al-2021-pre-print.83404/
 
Last edited:

Pyrrhus

Senior Member
Messages
3,916
Likes
11,892
Location
U.S., Earth
Last edited:

Pyrrhus

Senior Member
Messages
3,916
Likes
11,892
Location
U.S., Earth
France: Government report on Long Covid
The health authority in France (HAS) has issued a report promoting exercise and counseling to Long Covid patients. Apparently there is no mention of PEM and patients who fail to recover after 6 months are eligible for a psychosomatic diagnosis:
https://translate.google.com/translate?hl=&sl=fr&tl=en&u=https://www.has-sante.fr/jcms/p_3237041/fr/symptomes-prolonges-suite-a-une-covid-19-de-l-adulte-diagnostic-et-prise-en-charge&sandbox=1

Although the health authority first consulted with both the ME organization Millions Missing France and the Long Covid organization ApresJ20, the health authority apparently ignored all their concerns.

Millions Missing France responded:
https://translate.google.com/transl...14/covid-long-une-prise-en-charge-mal-adaptee


France: Government Recognition
There was then a vote in France's National Assembly to recognize Long Covid and "take charge" of addressing it.
Translation:
"An accomplishment in a flash!
Thanks to the tireless work of the association @apresJ20 and the deputy @MIRALLESMP, only a few months will have been necessary for the recognition of #LongCovid or endorsed by the National Assembly.
well done"
 
Last edited:

lenora

Senior Member
Messages
3,502
Likes
6,016
Thanks for all your work @Pyrrhus. You spend a lot of time digging out information for the rest of us and it is most certainly appreciated.

This probably isn't the place to mention it, but I was touched by your story of cutting out happy news reports to put on the window of the retail space undergoing renovations. I've often thought that the world would be a lot better off to hear more happy and funny stories than we do now. How sad that you only averaged one happy story per paper. @andyguitar's good news column was a great idea. Personally, I think laughter, music and happy memories and stories go a long way in our day to day health. Keep on peddling! Yours, Lenora.
 

Pyrrhus

Senior Member
Messages
3,916
Likes
11,892
Location
U.S., Earth
The Long Covid advocacy group Body Politic just released this strong statement in response to prominent people (i.e. Paul Garner) claiming that Long Covid can be cured by "positive thinking" and Graded Exercise Therapy (GET):

Response Statement on COVID recoveries - Feb. 2021
https://docs.google.com/document/d/1m8-2WklPS_n2IuIl-ycm58fHSlKV9RP8g-lxqf3NjOk/edit

Excerpt:
Body Politic said:
In light of recent public conversations about the role of exercise, neural training, and cognitive behavioral therapy in Long COVID recoveries, we at Body Politic want to make clear our stance on certain rehabilitation methods, and the varied paths to Long COVID recovery.

...

Until quality research is completed, it is important that we not rush to conclusions about what Long COVID is or how to treat it. It is also worth noting that while many Long COVID patients have similar symptoms, “Long COVID” still serves as an umbrella term for a variety of experiences.

Because Long COVID symptoms and experiences are diverse, we believe it is dangerous to promote treatments with insufficient evidence, especially when they may be harmful to a subset of patients.

Body Politic prides itself on being historically informed and patient-centered. We believe it is vital to listen to chronic illness and disability communities. Many Long COVID patients have gone on to be diagnosed with other conditions, including Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). In a recent study conducted by Body Politic’s research partner, the Patient-Led Research Collaborative, an average of 72% of the surveyed patients reported experiencing Post-Exertional Malaise (PEM) – a common ME/CFS symptom – after month six. Our peers in the ME/CFS community have been vital allies in the fight to understand Long COVID in the context of other post-infectious sequelae and advocate for patients’ needs. Research findings on ME/CFS must be considered when promoting treatments and rehabilitation programs for Long COVID patients who exhibit similar symptoms.

...

Those of us who run patient support groups or speak publicly about our experiences have a responsibility to use caution and provide context when promoting therapies or treatments. We believe there is power in community and that we must center patients’ voices. Most importantly, we must consider history and prior research findings and analyses when representing patients’ needs or speaking on their behalf.
 

Pyrrhus

Senior Member
Messages
3,916
Likes
11,892
Location
U.S., Earth
I FORGOT TO MENTION DISCUSSIONS ABOUT THE FIRST SARS OUTBREAK IN 2002!


Mental morbidities and chronic fatigue in severe acute respiratory syndrome survivors: long-term follow-up. (Lam et al., 2009)
https://forums.phoenixrising.me/thr...rs-later-27-met-cdc-critera-for-me-cfs.79381/
Main points:
  • 233 SARS survivors from hospitals of a local region in Hong Kong were assessed by psychometric questionnaires and a semistructured clinical interview for the Diagnostic and Statistical Manual of Mental Disorders (Fourth Edition) to determine the presence of "psychiatric" disorders and chronic fatigue problems.
  • 40% of SARS-CoV (2002 epidemic) survivors still report Chronic Fatigue after long term followup 4 years later.
  • 27% met CDC critera for ME/CFS.

Chronic widespread musculoskeletal pain, fatigue, depression & disordered sleep in post-SARS syndrome; a case-controlled study (Moldofsky/Patcai 2011)
https://forums.phoenixrising.me/thr...controlled-study-moldofsky-patcai-2011.83026/
Main points:
  • 22 Toronto subjects, 19 females & 3 males, were compared to 7 healthy female subjects and 21 drug-free female patients who fulfilled criteria for fibromyalgia.
  • Chronic post-SARS is characterized by persistent fatigue, diffuse myalgia, weakness, depression, and nonrestorative sleep.
  • Post-SARS patients had symptoms that were similar to fibromyalgia and CFS.


Other Studies:

Long-term sequelae of SARS: physical, neuropsychiatric, and quality-of-life assessment (Hui et al., 2009)
https://www.hkmj.org/system/files/hkm0912sp8p21.pdf

The long‐term impact of severe acute respiratory syndrome on pulmonary function, exercise capacity and health status (Ngai et al., 2010)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7192220/
 
Last edited: