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

That's in addition to the NYT magazine article?

https://www.nytimes.com/2021/01/21/magazine/covid-aftereffects.html

Despite the tense used to describe the failure, at times suggesting it was in the past, it's very well-researched.

Edit: looks like it is. Excellent article!

 

It's good ... but is it just me? I'm guessing American journalists get paid by word count. Succinctness this article is not. Feels like: why say in 10 words what you can say in 25. Like I say it's good, but a bit of a flog. Needless to say, I don't include @dave30th in this category .

 

very long and many good bits; here's one

 

January 28.

https://twitter.com/user/status/1352119864379363328


https://emergency.cdc.gov/coca/calls/2021/callinfo_012821.asp

For some people, the effects of COVID-19 can last well beyond the immediate illness. Patients and clinicians across the United States are reporting long-term effects of COVID-19, commonly referred to as long COVID. Symptoms may include cognitive difficulties, fatigue, and shortness of breath. In some patients, critical illness from COVID-19 may be the cause of persistent symptoms, but many patients with long-term effects had mild or asymptomatic acute COVID-19 infection. During this COCA Call, presenters will share their firsthand experiences with treating long COVID, focusing on the pulmonary, neurologic, and psychological aspects. They will also describe their experiences with establishing clinics that provide care for patients with these long-term effects.​

Target audience is medical professionals.

 

Anybody likes podcasts? 13 min.

https://www.bbc.co.uk/sounds/play/p094nz5x

https://twitter.com/user/status/1352231259498565632

 

There are plenty of anecdotal reports of people having the variability and cardinal signs that also recover at some point. There are also anecdotal reports of people with ME who didn’t have this in the beginning and had a pretty mild initial PVFS course only to get ME.

I don’t think there is any evidence to date that suggests to us subsets who are going to recover or not based on clinical presentation and time course other than the longer it goes on the lower the chances get.

 

We just don’t know enough to help us with these answers. I’ve wondered the same, like to me “self-limiting” does it mean no matter what management or lack thereof or what activity the person does will they still recover eventually no matter what? And for pwME no matter what we could’ve done early on would it have been hopeless?

Based on what I’ve read and seen, in scientific papers and anecdotal reports, I don’t think there are any differences in clinical presentation between those with PVFS who recover and those who don’t (ME/CFS) to suggest we would know ahead of time what’s going to happen to people. Maybe only the length of time it’s gone on without improving is suggestive of the probability of recovery.

 

Moved post responding to NYT article

I really hope that the Mount Sinai post covid center turns into a post-viral illness or ME/CFS center.

The article was very good exposure for us, especially to be front page (cover?) of NYT Magazine.

I think made a bit too much of theories, research and treatments that are only preliminary findings or not that useful in the case of treatments (like LDN, or saying that SFN can be treated).

 

It was Dr. Bell who said it was around the five year mark when improvements might lead to a recovery. I started feeling major improvement (80-90%) around the 5-6 mark, but I hadn't 'discovered' PEM yet.

 

The UK office of national statistics has published its most recent update of LC data: https://www.ons.gov.uk/peoplepopula...edestimatesoftheprevalenceoflongcovidsymptoms.

In Excel. Because reasons.

https://twitter.com/user/status/1352328791662751745

 

Developing services for long COVID: lessons from a study of wounded healers

Emma Ladds, Alex Rushforth, Sietse Wieringa, Sharon Taylor, Clare Rayner, Laiba Husain and Trisha Greenhalgh

https://www.rcpjournals.org/content/clinmedicine/21/1/59

Apparently, learning lessons does not involve learning lessons, even stubbornly rejecting that there are any lessons to learn from anything but this unique experience that has no comparables. Somehow. This is why we can't have nice things. Lots of navel-gazing but ultimately this could be an ME paper and not much would be different. Even when facing the same disbelief, they have to frame their disbelief as somehow different.

At least this confirms what people suspected:

Trisha Greenhalgh is currently sitting on the oversight group for the long COVID guideline at the National Institute for Health and Care Excellence​

 

Interesting. But before I ponder the percentages any more I'd like to better understand this demographic split:



In fact, what are the figures % of?

 

The demographic split could be due to long covid and ME/CFS intending to capture different things. Long covid just means "didn't recover quickly from covid 19", whereas ME/CFS attempts to define a disease.

They are presumably the chance that someone will have long covid, by gender.

 

I'm doubtless missing something obvious, but given all the age groups are non-overlapping, why don't they total to 100%? And why do the two genders not total to 100%?

 

Does this help, @Barry? It's one of several tables from the file. (I don't 'do' figures! )

 

It's the percentage of people who were initially infected (whom were included in the survey).

 

Thanks @Kitty and @Snow Leopard. That helps a lot.

 

Very strong correlation with age. Tight standard deviation.

The 70+ is interesting, probably because at this point standard tools lose much of their relevance in a population that already has significant disability.