Medscape: 3 Years Into Long COVID: Where Do We Go From Here? (by Lisa McCorkell, Patient-Led Research Collaborative)

ahimsa

ahimsa

Senior Member (Voting Rights)
3 Years Into Long COVID: Where Do We Go From Here?

https://www.medscape.com/viewarticle/993827

"... approximately 6% of all US adults are currently experiencing long COVID, with Hispanic/Latinx individuals, transgender individuals, and cis female individuals facing the highest rates."

(source = https://www.cdc.gov/nchs/covid19/pulse/long-covid.htm )

Hard to choose just one pull quote from this commentary but here's a short section that mentions ME/CFS.
Medscape said:
About 81% of people with long COVID face activity limitations, and 25% of people with it face significant activity limitations resulting from symptoms and conditions like cognitive dysfunction, post-exertional malaise, organ damage, myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, mast cell activation syndrome, and small fiber neuropathy, among many others.

Some are losing jobs and homes, being left by loved ones, missing birthdays and being with friends, and being unable to watch TV or listen to music.

Given COVID's unmitigated spread, with at least 1 in 10 people infected with the virus developing long COVID and reinfections increasing that risk, our community is unfortunately growing larger and larger as the days pass.
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Is the statement "our community is unfortunately growing larger and larger as the days pass." backed by data? The last data I saw, which is very hard to come across and definitely not too acurate, was that the number of Long-Covid patients had roughly stabilised with the number of recovering patients roughly being of the same order of magnitude of the new patients.
 
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I would imagine that the numbers are difficult to pin down for different reasons. some people may be experiencing remissions rather than completely recovering which of course nobody would be able to distinguish until the remission ends. People with LC/ their medics may not be considering that absence of symptoms doesn’t necessarily mean full recovery. And then there’s the impact of repeat infections.

There’s also the issue of people having symptoms that go undiagnosed for months, or misdiagnosed as depression/anxiety. So if they subsequently get diagnosed they add to the numbers.

As we keep saying here not enough is known in terms of research about the trajectory of ME/ numbers so difficult for LC to learn much from that
 
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NelliePledge said:
I would imagine that the numbers are difficult to pin down for different reasons. some people may be experiencing remissions rather than completely recovering which of course nobody would be able to distinguish until the remission ends. People with LC/ their medics may not be considering that absence of symptoms doesn’t necessarily mean full recovery. And then there’s the impact of repeat infections.

There’s also the issue of people having symptoms that go undiagnosed for months, or misdiagnosed as depression/anxiety. So if they subsequently get diagnosed they add to the numbers.

As we keep saying here not enough is known in terms of research about the trajectory of ME/ numbers so difficult for LC to learn much.
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I agree there are multiple difficulties and any assessement is hard and becoming increasingly harder to do in the future. However, that doesn't mean we should make up numbers. The numbers are significant enough already, they are gigantic! But the data I've seen, perhaps I've looked at the wrong data, doesn't suggest a big increase in the total people with Long-Covid, but rather a rough stabilisation https://github.com/bjornpiltz/ONS_LC. There's also a Twitter thread on the analysis of this data, but Twitter once again seems to be down.

I'm also not suggesting that Lisa McCorkell is making up numbers, she's a great advocate with a lot of knowledge and access to data and the point of a news report is also always to create urgency.
 
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There were some decent visualisation of the data. Unfortunately, with Twitter down I can't find it.

At the end of the day it is the order of magnitude that is deceicive. Whether the numbers are still slightly increasing or have stabilised is not too decisive if one sees how significant they already are! The statistics of many other diseases pale in comparison to what is seen here. Other data suggests the same. The same has been the case for ME/CFS for decades. So apparently it's not the numbers that count. If the numbers were to double within a day, would anything change? Perhaps I'm being a bit too pessimistic and really good data would result in more action. I really don't know.
 
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