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

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Mithriel said:
yes, I think PEM is being used to mean exhausted after exercise which is not the way it is used in ME. The tide is against us so maybe it is time to try to establish a term for what happens to us. PENE may not be a good description but at least everyone would not read it as something it is not.

We already have enough problems with people reading about Chronic Fatigue Syndrome and thinking they are chronically fatigued too but still have to get up to go to work every morning.
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It varies between people but generally what I've seen in LC forums is the same thing we mean. It definitely does not mean post-exercise fatigue the way the BPS fanatics use, that I can confirm. It's the increase of symptoms and general malaise. Not always with crushing exhaustion but generally speaking it means the same thing we do, accounting for how varied the symptoms themselves are between people.
 
InitialConditions said:
I suspect these sorts of findings will be found in many long-Covid patients, who similarly might report 'post-exertional malaise'. My feeling is this presentation has little to do with ME/CFS, and that the 'post-exertional malaise' is not ME/CFS PEM. I also think this patient is likely to make a good recovery with treatment.
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My feeling is that this sort of Blog, much like Paul Garner's, does not help the already considerable confusion around symptoms after Covid. The account is pretty difficult to interpret from a medical point of view. I am not clear that anything has really been found that would account for symptoms. if there has been clotting then it is unlikely that any sort of treatment would be relevant a year later.

I cannot see any particular reason why this person should not have PEM - either as part of a resolving post-viral illness or indeed ME. The shortness of breath suggests some lung damage may be but you have to have quite a lot of lung damage for shortness of breath to be disabling a year on. And mental exertion does not produce worsening of symptoms if the problem is lung damage.

Again, I think it demonstrates that we need our evidence to be carefully gathered and controlled. Otherwise all sorts of stories will propagate.
 
The ME/CFS community tends to be too quick to assume that someone didn't have ME/CFS because some other medical problem was found.

There is no reason to believe that someone cannot have ME/CFS and other health problems. It actually seems to be the norm. The concept of CFS as exclusionary diagnosis that cannot coexist with other fatiguing illnesses was meant for research purposes, not clinical use.

It's also possible that PEM is not unique to ME/CFS but found in some other illnesses as well. The kind of systematic research that would be needed to know whether this is the case has not been done.
 
Article in Danish TV2 tonight about a theory behind long covid. It has reached Norwegian media with the head line "Danish doctors believe they have found the answer to "long Covid"..

quote:

First and foremost, the lack of energy formation and the consequent late effects can be due to the fact that the energy factories in the body are put out of function, explains Lars Østergaard.

But according to the chief doctor, it can also be a consequence of the blood not getting out to the cells in the body because there are small blood clots in the vessels.

And finally, he believes that the immune system may have destroyed the ability to generate energy from the oxygen in the blood.


Original: Nu kan læger have fundet svaret på, hvorfor coronapatienter drænes for energi
google translation: Now doctors may have found the answer to why corona patients are drained of energy

ETA: added link to google translation
 
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Wonko said:
So basically they got nuffin...no clue, no fresh ideas.
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The article continues with the researcher calling it a mystery with many unresolved issues. A completely new disease, like a medical UFO.
Then it goes on with:

Lars Østergaard says that it is incredibly important to recognize that patients are ill and have a health challenge.

- Next, you can start doing some rehabilitation, and then it could be nice to get some treatments that can remove the condition, he says.
 
'Like' for the info, not so much for the content of that info.

It is nice to know that a presumed doctor would like to find treatments to 'remove the condition'.

I hope by that he means a cure, or at least a treatment, as that sounds like he has a much more ominous intent (it may be just a translational thing but such a way of speaking is reminiscent of 'things' that happened, a while ago).

But rehabilitation before treatment, again, is 'disappointing'.
 
Wonko said:
So basically they got nuffin...no clue, no fresh ideas.
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Well, at least it's something that their hypotheses happen to be the exact same hypotheses that have been around ME research for the last several decades. I don't what that something is but it's something. They're also pretty self-evident, to be honest. Which may be the most important something: how the hell did medicine sleep on the self-evident for so long?

It's endlessly frustrating seeing medicine flail and fail around this issue. How that profession gets anything done is frankly a mystery to me. But it's all about the feedback mechanism. The feedback on death is usually quick and unambiguous. Without death, though, yiiiiish. Actually: yiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiish.
 
Merged thread
Not sure what thread to put this in - it's a young guy who was initially diagnosed with ME/CFS, then 'corrected' to long-COVID.

Long Covid: 'It's like someone has piled sandbags on top of me' - BBC News

Reece caught coronavirus during the first wave of the pandemic in March 2020, but like many twenty-somethings, he wasn't hospitalised overnight.

What he thought would be a mild illness became a protracted nightmare with his partner Alice becoming his carer.

Months after his initial infection, he was diagnosed with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) by his GP and referred to a specialist. His CFS/ME consultant later confirmed his CFS/ME symptoms were a form of 'long Covid' and referred him to a long Covid clinic.
 
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https://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-020-05716-x
‘Long COVID’: persistent COVID-19 symptoms in survivors managed in Lagos State, Nigeria
BMC Infectious Diseases volume 21, Article number: 304 (2021) Cite this article

Abstract
Background
Coronavirus disease once thought to be a respiratory infection is now recognised as a multi-system disease affecting the respiratory, cardiovascular, gastrointestinal, neurological, immune, and hematopoietic systems. An emerging body of evidence suggests the persistence of COVID-19 symptoms of varying patterns among some survivors. This study aimed to describe persistent symptoms in COVID-19 survivors and investigate possible risk factors for these persistent symptoms.

Methods
The study used a retrospective study design. The study population comprised of discharged COVID-19 patients. Demographic information, days since discharge, comorbidities, and persistent COVID-19 like symptoms were assessed in patients attending the COVID-19 outpatient clinic in Lagos State. Statistical analysis was done using STATA 15.0 software (StataCorp Texas) with significance placed at p-value < 0.05.

Results
A total of 274 patients were enrolled in the study. A majority were within the age group > 35 to ≤49 years (38.3%), and male (66.1%). More than one-third (40.9%) had persistent COVID-19 symptoms after discharge, and 19.7% had more than three persistent COVID-like symptoms. The most persistent COVID-like symptoms experienced were easy fatigability (12.8%), headaches (12.8%), and chest pain (9.8%). Symptomatic COVID-19 disease with moderate severity compared to mild severity was a predictor of persistent COVID-like symptoms after discharge (p < 0.05).

Conclusion
Findings from this study suggests that patients who recovered from COVID-19 disease may still experience COVID-19 like symptoms, particularly fatigue and headaches. Therefore, careful monitoring should be in place after discharge to help mitigate the effects of these symptoms and improve the quality of life of COVID-19 survivors.
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https://www.dovepress.com/prevalenc...ovid-care-facility-peer-reviewed-article-IJGM

Prevalence of Symptoms in Patients Discharged from COVID Care Facility of NIMS Hospital: Is RT PCR Negativity Truly Reflecting Recovery? A Single-Centre Observational Study


Authors Tomar BS, Singh M, Nathiya D, Sharma A, Sharma E, Bareth H, Suman S, Ruparelia DP, Patel JB, Gajera VK

Received 19 December 2020

Accepted for publication 3 March 2021

Published 25 March 2021 Volume 2021:14 Pages 1069—1078

DOI https://doi.org/10.2147/IJGM.S295499

Checked for plagiarism Yes

Review by Single anonymous peer review

Peer reviewer comments 3

Editor who approved publication: Dr Scott Fraser



Balvir S Tomar,1 Mahaveer Singh,2 Deepak Nathiya,3 Abhishek Sharma,4 Eshan Sharma,4 Hemant Bareth,3 Supriya Suman,3 Darshan Purshotambhai Ruparelia,4 Jaykumar Bharatbhai Patel,4 Vikrant Kantilal Gajera4 On Behalf of the NIMS COVID 19 Investigator Group

1Institute of Gastroenterology, Hepatology & Transplant, Nims University Rajasthan, Jaipur, India; 2Department of Endocrinology, National Institute of Medical Sciences and Research Hospital, Nims University Rajasthan, Jaipur, 303121, India; 3Department of Pharmacy Practice, Institute of Pharmacy, Nims University Rajasthan, Jaipur, India; 4Department of General Medicine, National Institute of Medical Sciences and Research Hospital, Nims University Rajasthan, Jaipur, India

Correspondence: Mahaveer Singh
Department of Endocrinology, National Institute of Medical Sciences and Research Hospital, Nims University Rajasthan, Jaipur, 303121, India
Tel +91 8949836075
Email drms.mamcmed@gmail.com
Deepak Nathiya
Department of Pharmacy Practice, Institute of Pharmacy, Nims University Rajasthan, Jaipur, 303121, India
Tel +91 9929600137
Email dnathiya@nimsuniversity.org

Purpose: To assess the prevalence of post-COVID symptoms in patients with recovered COVID-19 (nasopharyngeal RT PCR negative) who were discharged from an acute COVID care facility at a tertiary care teaching hospital in North India.
Methods: This study was an observational study with retrospective data collection, conducted in the COVID follow-up clinic, a combined clinic of medicine and endocrinology. Patients discharged from the acute COVID care facility were recruited after 14 days of discharge if they fulfilled inclusion and exclusion criteria. The retrospective data was collected from the hospital records/EMR and analysed by the SPSSv23.
Results: Fifty patients, who fulfilled the inclusion and exclusion criteria, were included in the study. The Mean age of patients was 53.4± 13.8 years (range 28– 77). Seventy six percent were male, and 38% had type 2 diabetes. Fever (94%), cough (78%) and breathlessness (68%), were the most common symptoms at presentation to acute care facility. Oxygen saturation at presentation had a negative correlation with D-Dimer, age, and C reactive protein. When patients were evaluated clinically, after 14 days (range 15 to 50 days) of the discharge, 82% of patients had at least one persistent symptom. Fatigue (74%) was the most common symptoms in follow-up followed by breathlessness (44%), and muscle weakness (36%). Two patients had persistent fever, even after negative RT PCR status.
Conclusion: Patients discharged from the acute COVID care facility had a high prevalence of post-COVID symptoms even after 14 days.

Keywords: COVID-19, diabetes, SARS-CoV-2, oxygen saturation, post-COVID
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The ME/CFS community tends to be too quick to assume that someone didn't have ME/CFS because some other medical problem was found.
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It is always possible to have ME as well as another illness; sheer numbers mean that there is someone with almost every disease as well as ME. The problem is if another disease accounts for all the fatiguing symptoms there is no need to assume ME as well.

There is a slight creep to saying that people with MS have CFS as well when what is meant is that they have a chronic fatigue as part of their disease. It is a consequence of the MS and there is no need to add ME to the diagnosis - used because that is the preferred patient term not because there are any of the specific things that make up ME.

It is becoming common for fibromyalgia to mean pain and ME/CFS to mean fatigue which does us all a disservice.
 
A longish piece from the BBC World Service in which the plight of two, teenage girls with LC are examined:

Coronavirus conversations: Children and Covid-19 (26:30-44:55m).
We hear from two mothers whose teenage children have suffered from persistent symptoms, months after testing positive for Covid-19. We’ll also get a specialist in paediatric infectious diseases to explain what is known about children and coronavirus.
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No mention of ME/CFS but it is otherwise well produced.
 
An article about an Australian study on LongCovid. Of course there's no mention of ME/CFS and there's the implication that this phenomenon has never been seen before.

Sick for the long haul: One third of COVID-19 patients have symptoms for eight months

One in three Australian COVID-19 patients is still battling symptoms eight months after being infected, and youth is no protection against the debilitating effects of ‘Long COVID’.
...
Of the patients who met the criteria for ‘Long COVID’, almost half (46 per cent) said they had not fully recovered, the researchers reported in their paper published on Wednesday to the pre-print server medRxiv which is not yet peer-reviewed.
...
Patients didn’t show any significant signs of improvements between their four-month and eight-month assessments.
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This sort of nonsense isn't surprising given that almost all Australian doctors believe that all illnesses are psychiatric unless proven otherwise:

“These symptoms are probably a mixture of a whole range of things that happened to these people after [being infected with] the virus. Some people may have been traumatised by their COVID diagnoses and had predominantly mental health symptoms, some patients were really sick and needed ventilation and have lung injuries, middle-aged women may have an immune response,” he said.
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I suspect LongHaulers here will be as badly treated as those of us with ME/CFS once the novelty wears off. There have already been reports of some being told that their symptoms are due to 'deconditioning' and that they must undertake graded exercise.
 
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