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

This is what the rapid NICE guideline said about the terminology:

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?

 

I think it may be that UK ME patients have managed to find these people out. The hatred reflects a fear that a meal ticket lovingly polished for decades has been shown to be a cheap copy.

 

It's OK, that's because they don't either.

 

https://twitter.com/user/status/1343237329268297728

 

https://twitter.com/user/status/1365066563334856704

 

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:

 

Rapid response in BMJ to earlier, paywalled, article.
Vaccinating children to prevent Long Covid? Much more caution needed in interpreting current epidemiological data
https://www.bmj.com/content/372/bmj.n157/rr

 

"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.

 

I suspect it's going to be more like 1% with long-term longcovid, but it's still a large number!

 

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.

 

https://twitter.com/user/status/1365057088481853443

 

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.

 

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 ?

 

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)

 

I thought that that was exactly what they did.

 

Yet the psychs did.

Edit - what @chrisb said.