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

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Sphyrna said:
Wow, thanks Nisreen, that really means a lot to me.
So, Long COVID is an umbrella term encompassing organ damages and "ME-like" symptomology (among some other things, like PICS, I guess), and there is quite a lot of room for different combinations of the two.
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This is what the rapid NICE guideline said about the terminology:

Ongoing symptomatic COVID-19
Signs and symptoms of COVID‑19 from 4 weeks up to 12 weeks.

Post-COVID-19 syndrome
Signs and symptoms that develop during or after an infection consistent with COVID‑19, continue for more than 12 weeks and are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body. Post‑COVID‑19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.

Long COVID
In addition to the clinical case definitions, the term 'long COVID' is commonly used to describe signs and symptoms that continue or develop after acute COVID‑19. It includes both ongoing symptomatic COVID‑19 (from 4 to 12 weeks) and post‑COVID‑19 syndrome (12 weeks or more).
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https://www.nice.org.uk/guidance/ng188
 
Thank you. I suppose the terminology is even less specific than I thought, if it also includes ongoing symptomatic COVID-19. So, this definition can even include cases that eventually self-resolve and do not convert to any other Post-COVID-19 syndrome, muddying the waters even further. I don't see how anyone is supposed to work with this, other than for purposes of figuring out risk factors that lead to development of an ongoing disease process. That doesn't make the pathology any more well-defined, though, or does it?
 
Wyva said:
Btw, this is totally anecdotal, but I thought I'd share anyway. Some people with LC in my ME/CFS group say their symptoms started 3-4-5 months after the infection.
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Starting 3-4-5 months after is not uncommon in a relapse-remitting pattern. There are some longcovid sufferers on Twitter that seem to be suffering from such relapse-remitting patterns too.
 
Vox interview with Hilda Bastian:
The scientist who's been right about Covid-19 vaccines predicts what's next

Julia Belluz: Do you have any predictions for long-lasting effects of the pandemic, how it changes society?

Hilda Bastian: For me, one of the things that is a really huge unknown is what happens with long Covid. When I lived in Germany, I was trying to undrstand why issues for people with disabilities were so much better in Germany than any place I'd ever spent time in, on a scale that was really quite extaordinary.

Then, I started to read about the history of the disability movement after World War I, that you had such a huge proportion of young men with major disabilities, whether it was sight, limbs missing — and to have such a massive proportion of your population suddenly with disabilities, changed societies. It happened again after World War II. So, I'm thinking about that again, now.

To some extent, it's going to depend on how disabling long Covid turns out to be, and for how many people? Are we looking at a really serious big wave of decades-long disability? Because if we are, that is a really profound, sudden change in societies.
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"To some extent, it's going to depend on how disabling long Covid turns out to be, and for how many people? Are we looking at a really serious big wave of decades-long disability? Because if we are, that is a really profound, sudden change in societies."

This is somewhat speculative, and I hope its wrong, but current world cumulative Covid cases is now over 100 million. If 10% get long duration long Covid, and it might be some other number, then we might already be looking at 10 million newly disabled patients. If that does not help get research funding moving, then what happens when its 20 million, 30 million etc.? Vaccination will probably curtail higher numbers, but we are not sure of that yet.
 
alex3619 said:
"To some extent, it's going to depend on how disabling long Covid turns out to be, and for how many people? Are we looking at a really serious big wave of decades-long disability? Because if we are, that is a really profound, sudden change in societies."

This is somewhat speculative, and I hope its wrong, but current world cumulative Covid cases is now over 100 million. If 10% get long duration long Covid, and it might be some other number, then we might already be looking at 10 million newly disabled patients. If that does not help get research funding moving, then what happens when its 20 million, 30 million etc.? Vaccination will probably curtail higher numbers, but we are not sure of that yet.
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I suspect it's going to be more like 1% with long-term longcovid, but it's still a large number!
 
alex3619 said:
This is somewhat speculative, and I hope its wrong, but current world cumulative Covid cases is now over 100 million.
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That is cases of coronavirus infection, not cases of COVID-19, right? There's no evidence as far as I know that people with asymptomatic coronavirus infection are reporting prolonged symptoms--I mean, they had no symptoms to begin with. I don't think it's warranted to make any extrapolations from infections--only from actually cases of COVID-19, which is a much lower number.
 
dave30th said:
That is cases of coronavirus infection, not cases of COVID-19, right?
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That is correct. Not everyone infected with the virus will get the disease we call Covid-19.

According to WHO the current number of novel Coronavirus cases stands at 112 649 371. Here is the link - https://www.who.int/emergencies/diseases/novel-coronavirus-2019

The big unknowns are around the prevalence of long Covid, its duration, its progression, and so on. It might mostly go away. We are only presuming its either ME or ME-like. We are still unable to say for sure its not regular post viral fatigue plus specific damage to organs by the virus.

I have repeatedly read of asymptomatic patients with long Covid, or presumed long Covid. There is still not good epidemiology on this. There does not seem to be a proven strong association between severity of Covid infection and subsequent long Covid. I could be wrong of course, there is a lot of info out there and not all of it is accurate, and long term epidemiology is still being done. Now I expect there is probably a strong association between lung scarring, blood clots etc. and severity and duration of infection. These are post Covid problems that may or may not be at the core of long Covid. It is not clear that there is not a separate entity, ME-like at least, that is causing issues. These questions will not be resolved for some years yet. It might even be a decade before we have reliable long-term data.

My suspicion, far from proven, is that long Covid is about the immune response and consequences, not the severity of infection. I do expect some degree of association, as it would be expected that a worse infection might lead to a stronger immune response, but its not clear it will be a strong association. Lots of patients not officially diagnosed with Covid-19 are claiming to be long haulers. I have no reason to doubt them as yet. It might be that there are those with long term consequences of blood clots and other Coronavirus damage, and then there are those who have an ME-like illness. Heck we might even be seeing another ME pandemic, but its being confused by the presence of the Coronavirus. There is also the issue that many who have not been hospitalized have detectable damage that was not causing major symptoms, sometimes from blood clots. I have no idea how many this applies to.

Epidemiology based only upon hospitalized cases of Covid-19 may or may not be a good idea in the long run. Certainly it needs to be done. Its just looking like its not enough to really grasp what is going on.

There are a lot of unknowns right now. Its why I keep using qualifiers on my remarks.

I am treating this entire thread as speculative. Its still far too soon to have reliable data.
 
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Amw66 said:
Peculiar to ME is the double spike in female incidence which could be linked to hormonal influences of puberty and post puberty ( pregnancy etc).
Has anyone looked at this re COVID 19 ?
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I think the evidence for the double spike in ME/CFS is rather weak. Although, it certainly would be interesting to know if there is any age pattern in Long Covid incidence that isn't directly related to Covid-19 incidence.
 
Hutan said:
I think the evidence for the double spike in ME/CFS is rather weak. Although, it certainly would be interesting to know if there is any age pattern in Long Covid incidence that isn't directly related to Covid-19 incidence.
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In regards to women with Lc being more affected, i hear from LC patients claiming disability getting sent to psychiatrist, who proceed to tell them LC is caused by childhood abuse and should be rehabilitated through CBT and GET.

(you can’t make this stuff up)
 
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