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

Piece in the Guardian today about LongCovid quoting Charles Shepherd. Nothing very new.

 

New Guardian article out today. I feel so desperately sorry for these people, it’s so hard to be so sick with something and have no one willing or able to help you ,apart from us MEers, of course, who have “been there, done that, got the t-shirt” ...I hope they start to get some support and help sooner rather than later.
https://www.theguardian.com/world/2...ths-on-im-still-unwell?CMP=Share_iOSApp_Other

 

We did manage to get the CSP to add a section on PVFS https://www.csp.org.uk/public-patient/covid-19-road-recovery to this page (and to remove the quote in massive letters about the importance of exercise) but sadly the Norwegian crew seem to have ignored that bit!

 

Care Dependency in Non-Hospitalized Patients with COVID-19

https://www.mdpi.com/2077-0383/9/9/2946/htm

 

The gender imbalance is interesting, given what is seen in ME/CFS

 

Possibly women were over-represented in the Facebook groups.

 

That was pretty good. Ironic to be in the Guardian, which has enthusiastically participated in the campaign to malign ME.

This is the threat that "illness without disease" poses. It blinds us to real threats while putting out entire edifices to fully artificial ones. This warning should have been loud and clear, instead everyone is confused about things they should have expected but were assured were imaginary. This is the disaster the psychosomatic ideology has caused: total failure.

Quacks and charlatans have for decades made decision to fail, for their own selfish purposes in the pursuit of a delusional ideology. They have imposed those choices on sick people who loudly rejected consent to being experimented upon, sick people who lost millions of life years. All for absolutely nothing but astrology-level quackery and a few thousand mediocre wastes of careers.

This should have been anticipated and health care systems should have been prepared. Instead they still can't even keep up with evidence that has been clear for decades. Zero doubt this is the worst failure of expertise in human history. No experts have ever failed worse than this all on their own. Disaster is usually when politicians don't listen to experts. Here we have the rare opposite. And we fucking told you so.

 

Long-haulers and the lingering effects of COVID-19

https://www.tmc.edu/news/2020/09/long-haulers-and-the-lingering-effects-of-covid-19/

Although this is technically true, many people got ME from H1N1 so all that saying this isn't the flu isn't very helpful.

I think this is the first time I have seen that "list of expertises involved" not naming psychologists and psychiatrists.

Not everyone can be patient, though. As time drags on more people will face ruin. You have to act faster than this when it comes to information. Even if you can't provide services and treatments you have to integrate this into normal practice, most people can't simply take 1-2 years to recover without support. As in, probably 95% of people, at a minimum. Medicine has to start taking into account the outside world, the consequences that happen outside of clinics and hospitals. This thing where reality is not taken into account leads to very poor outcomes.

 

Redefining Covid-19: Months after infection, patients report breathing difficulty, excessive fatigue

https://edition.cnn.com/2020/09/13/health/long-haul-covid-fatigue-breathing-wellness/index.html

Here's the thing, though, there is at least a 90% chance that had she seen herself as a patient a year ago, she would have very likely "diagnosed" anxiety here. And I'm being very generous with 90%. This is a failing, an active one that needs to be rooted out. This thing relies on magical powers that simply don't exist, we do not have the means to either confirm or falsify a diagnosis of anxiety, it's just not a thing. We can only say that from actually living it, which medicine refuses because it considers patient input suspect.

How about we end that arbitrary threshold? It never made sense and it's clearly unnecessary. Why do something wrong just because we've been doing it this way?

I'll just repeat this last one for the slow people at the back of the class:

 

ON the question of the six months delay for diagnosis, I think the reason for that became clear with the 1979 Southampton outbreak. It was reported as ME but all but one of the children reported back for school at the beginning of the autumn term less than three months later, apparently all well. The one was found to have a differential diagnosis. There seems little to be gained from calling that ME.

 

A thing about medicine is its often about diagnosis using overt objective symptoms, and sometimes biochemical signs that are validated in a small range of diseases. Physical lesions are often easy to see, and some kinds show up on X-rays. Yet biochemical lesions are a complete mystery. We still do not have the technology to reliably see them, though we are advancing rapidly. Heck, we could start a long debate on what I mean about biochemical lesions.

The sad thing about medicine is that when faced with complex issues they cannot measure they often defer to superstition. Hence the psychobabble.

This is not all doctors, or all of medicine, of course. We need those medical researchers who tease apart the complex biochemistry to find root causes for issues.

 

1 in 200 is low.

 

The Dubbo study with EBV, Ross River virus (and I think Q-fever?) showed a range from 8-12%, or about 10%, for some time. 0.5% is indeed low. However I don't know that we have enough information to definitively answer why it is that low.

One possibility is that those who are post-Covid for more than three months are a distinct minority of the total, and so numbers will be low for now. Over time this would rise. 12% is however in the ballpark range of ongoing post viral issues, and historically some of those qualify for an ME diagnosis some months later. I am not sure what that figure is though, the research is obfuscated by use of varying CFS definitions in this research, not a definitive diagnostic entity.

 

https://www.ctvnews.ca/health/coron...athing-difficulty-excessive-fatigue-1.5102886

 

https://twitter.com/user/status/1305469943375368192

 

The lasting misery of coronavirus long-haulers
Months after infection with SARS-CoV-2, some people are still battling crushing fatigue, lung damage and other symptoms of ‘long COVID’.

https://www.nature.com/articles/d41586-020-02598-6

 

Sure, and the massive wildfires in California are a mild inconvenience for some people. We don't know how reliable it is, but the best data we have is that this criminal negligence has caused one of the lowest quality of life level in all of medicine and about 1/4 deaths by suicide, amounting to close to 25 years of life expectancy lost.

A "breakdown of trust". Medicine is leaving us to waste away and die. The breakdown of trust happened decades ago, by now it's blatantly criminal neglect. The standard of care is literally gaslighting and lying to our faces.

"Persist", as in "are the universal norm". And not according to us, this is a basic fact, even one published in scientific literature. Just ask doctors what most think of us, holy crap is it insulting and cruel. Hell, one could even research that, but it would show that things aren't just a tad breakdowny and actually amount to criminal negligence, so much worse than this white-washed version attempts to minimize this massive failure.

If only there were some process by which we could take partially understood things and explain them fuller. Because that partial understanding of an infectious trigger by common pathogens is pretty clear by now and has nothing to do with the contrarian delusional fantasy model that is currently used in practice despite there being no evidence whatsoever and also happens to be not explained at all.

"Not fully understood" is not a valid reason to reject doing research for decades while millions beg for their lives, it literally is the opposite, it demands research. Which was categorically denied for decades. It is well-enough partially understood to take this seriously, the refusal of which has lead to something much more serious than a "breakdown of trust". By this standard there was also a bit of a "breakdown in trust" during the AIDS crisis. Just a tad bit, in the sense that there clearly are more than 100 grains of sand on a beach.

It really does not help with that whole trust thing to continue to blatantly lie and misrepresent not only what happened but is actually the current norm, almost universal in practice. Do better. Do 100x than this and stop insulting our intelligence and the memory of those we have lost, sacrificed to this insane dystopian nightmare of choice.

 

I don't think the paper is compelling enough for its own thread, but a team did a thematic analysis of the Reddit Covid19Positive forum, as well as some Facebook groups. It's interesting but it really shows the issue with unasked questions, they had to make choices about what themes to factor in and completely missed exertion intolerance, which is one of the most common and discussed theme.

A good start, though, with a better neural network that does not require themes to be identified this will be very valuable. It's also notable that anxiety is a common theme but usually discussed negatively (the paper does discuss this, that it did not do sentiment analysis so it's a known weakness) in being dismissed by GPs as "it's just anxiety". Though not universally, it's still discussed prominently, but usually they are talking about autonomic symptoms and so it should be classified differently.


Social Listening as a Rapid Approach to Collectingand Analyzing COVID-19 Symptoms and Disease NaturalHistories Reported by Large Numbers of Individuals

https://www.liebertpub.com/doi/pdf/10.1089/pop.2020.0189