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

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These people really have a low bar for trauma, especially considering how prevalent Long COVID is in young adults, who mostly suffered from only mild infections, and hence where organ damages only play a negligible role as well. LC skeptics are quick to blame news for inducing a nocebo effect, but any reasonably well-informed YA should also know that the IFR at that age is rather low, and LC occurred long before there was any significant coverage of it.

I could understand lying in the ICU for weeks on end, fighting for your life, being traumatizing, but this is just an insult to human resilience, with a dash of not-so-covert sexism mashed in, for good measure. The fact that commonly used health measurement scales for trauma do a really shit job of discriminating PTSD and dysautonomic symptoms likely won't help here.
 
Source: Le News
Date: March 31, 2021
URL:
https://lenews.ch/2021/03/31/swiss-government-commission-to-look-at-funding-for-long-covid/


Swiss government commission to look at funding for Long Covid
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Other Long Covid sufferers, typically with no underlying health
conditions and mild initial symptoms, have persistent symptoms that are
harder to diagnose but in some cases leave them debilitated to a degree
that prevents them from working. The symptoms experienced by some of
these patients resemble those associated with ME (Myalgic
Encephalomyelitis), CFS (Chronic Fatigue Syndrome) and POTS (Postural
Orthostatic Tachycardia Syndrome), illnesses that are known to be
triggered by viral infections. Women are more likely than men to suffer
from these conditions and younger people are typically at greater risk
than the elderly.
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Sphyrna said:
These people really have a low bar for trauma, especially considering how prevalent Long COVID is in young adults, who mostly suffered from only mild infections, and hence where organ damages only play a negligible role as well. LC skeptics are quick to blame news for inducing a nocebo effect, but any reasonably well-informed YA should also know that the IFR at that age is rather low, and LC occurred long before there was any significant coverage of it.
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IFR=?
 
Living with long COVID, 1 year on

A personal account of long covid (and improvement after a low histamine diet). No mention of ME/CFS (apart from "chronic fatigue") but this is how she described some of her symptoms:

But it didn’t — it got worse. Over the next 3 months, I developed pain in my throat and glands, migraine-like headaches that radiated down the side of my face, nausea and digestive issues, tiny red spots all over my arms, extreme fatigue, and a complete inability to exercise.

Even trying to go for short walks on days when I felt OK would land me back in bed, aching all over, for a couple of days.

In June 2020, I spent a week completely bed-bound by the most debilitating fatigue I’ve ever had. It was exhausting just to clean my teeth. I had to sit down in order to take a shower, and while sitting up, my heart rate would climb to 100 beats per minute. It felt like I was under a heavy weighted blanket, and the center of my chest ached.

Now, I know that people with long COVID can develop myocarditis, which could have been the cause. At the time, though, all I knew was that I was scared.

People may read this and wonder how I carried on working. But I don’t know what I would’ve done with myself if I couldn’t. I didn’t experience the classic long COVID “brain fog,” so I could still think relatively clearly. Work provided a form of distraction from what was happening. It was something I could do, even if I couldn’t do anything else.

(...)

Not that long ago, I had to ration the energy I used in a given day — to cook, to clean, to take a shower — in order to avoid a relapse. Now, I have the luxury of not having to think about it.

And it truly is a luxury. People who haven’t had chronic fatigue don’t understand the sheer freedom of being able to do basic daily tasks without worrying about being punished for it later — of being able to do things yourself instead of being dependent on someone else.

I may not be “back to normal,” but I’m hopeful that I will get close enough. With more research and support, I hope that others with long COVID can get there, too.
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https://www.medicalnewstoday.com/articles/living-with-long-covid-1-year-on
 
alktipping said:
do you think he will tone down his usual presenting style . don't think that his particular brand of enthusiasm would suit this topic .
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It is difficult to know what the tone is likely to be. Brian Cox, as a physicist, is not an expert on medical matters. Adam Rutherford is a geneticist and presenter of BBC Radio 4’s “Inside Science”. Both he and Nisreen Alwan have experienced long covid but their knowledge of ME will be limited, if not incorrect. Nisreen Alwan and the two other participants are all professors in subjects related to Public Health. As it is a Royal Society lecture, I would expect the tone to be mostly serious.

When I listen to any discussion relating to ME, I am always on tenterhooks, never knowing whether information given on ME will be misleading. It shouldn’t be like that. It matters because it affects the lives of so many vulnerable, ill people.
 
New UK data that's likely to be of interest: Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK - Office for National Statistics (ons.gov.uk)


This rate of recovery looks similar to with other post-viral problems we've seen before:
https://www.ons.gov.uk/visualisations/dvc1256/fig03/index.html

They have info for symptoms at 5 and 12 weeks, but some of the data only seems to be at 5 weeks.

eg the sex differences don't seem that big, but it's uncertain and only at 5 weeks:

A higher percentage of female (23.0%) than male (18.7%) study participants reported symptoms that persisted for at least 5 weeks after the assumed date of coronavirus infection (Figure 4). However, relatively wide confidence intervals indicate a degree of uncertainty over this finding.
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Lots more info in there.
 
I don't recall seeing this quote before from Dr Anthony Fauci, M.D., director of the NIAID at the NIH, regarding the similarity of some forms of post-acute COVID sequelae with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome

post-acute COVID sequelae.PNG

Code: 
https://twitter.com/TomKindlon/status/1377644100028076035?s=20
Code: 
https://www.facebook.com/TomKindlonMECFS/posts/1925383444276438
 
(Doesn't seem worth doing a thread on every paper as few add anything significant other than confirming what is known and they don't bring much discussion.)


Limited recovery from post-acute sequelae of SARS-CoV-2 (PASC) at eight months of a prospective cohort, 2021, Darley et al

There is increasing recognition of the prolonged illness following acute coronavirus disease 2019 (COVID-1). In a longitudinal cohort of 99 patients, 32% reported persistent symptoms and 19% had Long COVID (Defined as fatigue or dyspnoea or chest tightness) at median 240 days after initial infection. There was no significant improvement in symptoms or measures of health-related quality of life between 4 and 8-month assessments.

In multivariable analysis, female gender (OR 3.2, 95%CI 1.3-7.8, p=0.01) and acute COVID-19 hospitalisation (OR 3.8, 95% 1.1-13.6, p=0.04) were independently associated with Long COVID at 8-months. Only 80% patients reported full recovery at 8 months. Further research is required to understand the immunologic correlates of abnormal recovery and the long-term significance.​

https://www.medrxiv.org/content/10.1101/2021.03.29.21254211v1
 
Tom Kindlon said:
I don't recall seeing this quote before from Dr Anthony Fauci, M.D., director of the NIAID at the NIH, regarding the similarity of some forms of post-acute COVID sequelae with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome

View attachment 13721

Code: 
https://twitter.com/TomKindlon/status/1377644100028076035?s=20
Code: 
https://www.facebook.com/TomKindlonMECFS/posts/1925383444276438
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The piece says it is a quote from February but I'm wondering now whether it is the quote from last July that we knew about before? I was hopeful it was a more recent quote.
 
Esther12 said:
New UK data that's likely to be of interest: Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK - Office for National Statistics (ons.gov.uk)


This rate of recovery looks similar to with other post-viral problems we've seen before:
https://www.ons.gov.uk/visualisations/dvc1256/fig03/index.html

They have info for symptoms at 5 and 12 weeks, but some of the data only seems to be at 5 weeks.

eg the sex differences don't seem that big, but it's uncertain and only at 5 weeks:



Lots more info in there.
Click to expand...
My mother told me that Dr Shepherd was on at the start of the 10 PM news on Sky News. It sounded like it was on this data. It might get repeated in a future hour.
 
Esther12 said:
New UK data that's likely to be of interest: Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK - Office for National Statistics (ons.gov.uk)


This rate of recovery looks similar to with other post-viral problems we've seen before:
https://www.ons.gov.uk/visualisations/dvc1256/fig03/index.html

They have info for symptoms at 5 and 12 weeks, but some of the data only seems to be at 5 weeks.

eg the sex differences don't seem that big, but it's uncertain and only at 5 weeks:



Lots more info in there.
Click to expand...


I noticed that Matt Handcock responded to this yesterday, maybe the first government minister to comment on Long covid?
 
Esther12 said:
New UK data that's likely to be of interest: Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK - Office for National Statistics (ons.gov.uk)
Click to expand...

To me this is an indication of just how useless it is to collect statistics if you do not understand the realities of clinical medicine.

It says: Over the four-week period ending 6 March 2021, an estimated 1.1 million people in private households in the UK reported experiencing long COVID.

No they didn't report anything because there was nobody to report to and not even the people in the study group reported experiencing Long Covid. Only a statistician would miss the fact that the sentence is straightforward nonsense.

The document points out that LongCovid is a lay term - so what medical use is any of this expected to be?

Just asking about symptoms is a complete waste of time. When you take a clinical history symptoms fly around like autumn leaves in a stiff breeze and you sift and sort them according to whether or not they fit into some meaningful pattern. Nobody does medicine by counting symptoms or ticking yes or no for a symptom.
 
https://ejmcm.com/article_9929.html

Prevalence of Fatigue in Patients Post Covid-19


European Journal of Molecular & Clinical Medicine, 2021, Volume 8, Issue 3, Pages 1330-1340



Abstract
Background:
pandemic Covid-19 isn't a simple health-care problem that will go away and never come back. One of the most common symptoms of Post-acute covid-19 is fatigue. Purpose of the study: To determine the prevalence of fatigue in adult people post mild and moderate covid-19 cases and the relation between fatigue post covid-19 and several factors.

Material and methods:
Eighty-one post covid-19 patients from both genders were recruited from registry records of preventive medicine and surveillance of Ministry of Health and Population in the city of El Minya / Egypt. The study was conducted from 15st September 2020 till 15st December 2020. Demographic data were collected (age, sex, BMI), smoking status, Data about status of covid-19 if they hospitalized or not hospitalized and received treatment. Fatigue post covid-19 was evaluated by using Modified Fatigue Impact Scale (MFIS) and Shortness of breath (dyspnea) by Numerical rating scale of dyspnea.

Results:
fatigue in adult patients post mild and moderate covid-19 cases after three to five months from their recovery was prevalent 64.2% using the MFIS. There was no significant association between fatigue and age, sex, BMI, smoking, hospitalization and received treatment. The association between NRS and MFIS was moderately positive and significant. (r = 0.39, p = 0.0001).

Conclusion:
fatigue was prevalent among adult patients post covid-19 with 64.2% using the MFIS. Continuous monitoring and timely intervention prevent long-term symptoms from being chronic.
Keywords:
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