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

Probably best not to read the tweet replies

 

Obviously not the only factor, but definitely a major one, especially as severe acute illness tends to happen in older people while LC is concentrated right in the middle of the working age population.

But as is pointed out, this is not assessed by economic data, it can only be inferred. Shows how ill-prepared governments are to deal with health-related consequences when medicine is sitting on its butt waiting for magical answers. This should have been a no-brainer from the start, but so was studying the long-term consequences of Covid, which almost no one in medicine even thought was a good idea, thanks to the braindead beliefs about socially spread fear, or whatever it is they actually believe.

https://twitter.com/user/status/1481009103724072966

 

She makes a reference to other post-viral illness in the article where she links to "ME/CFS: Essentials of Diagnosis and Management" by Lucinda Bateman et al and to Brian Hughes', Steven Lubet's and David Tuller's article in Health Affairs.

Quote (my bold):
Understanding how many people have long Covid at any given time requires an assumption about average illness duration. In the U.K., which is doing a much better job collecting data than the U.S., more than 70% of people with persistent COVID-19 symptoms have been sick for more than three months, and more than one-third have been sick for at least a year. This chronicity is consistent with other post-viral illnesses, which behave similarly to long Covid and often last for years.

 

Feature on the brilliant Dr. Ron Davis

https://www.thetimes.co.uk/article/...2?shareToken=0300a38a426b1cd859f4d8f722938150

"Could this scientist have the answer to long Covid?"

The Stanford biochemist Ron Davis’s mission to cure his son’s chronic fatigue syndrome may be key to solving the crisis precipitated by the pandemic.

 

Betteridge's law of headlines = "Any headline that ends in a question mark can be answered by the word no."

https://en.wikipedia.org/wiki/Betteridge's_law_of_headlines

 

Twitter thread from author.

 

I don't know how good this pacing coach is or if her clients recover but there is a danger with the emphasis on pacing as if it was a treatment.

Pacing is just a word used to describe a way of living that people are forced to use to have some life with ME. It can takes years before you can learn it from experience so it is good to explain it to new patients to give them a chance at not getting worse but it is a way of managing the disease, not overcoming it. If you pace your body has a chance to do whatever it is that helps people get better but the disease carries on underneath and you can worsen just as easily.

People who keep careful track of their heart rate and watch what they do can become very despondent when they get worse despite it. I suppose it is like wearing a mask, your chances of staying well are better with it but that is as much as you can say.

Most people with longcovid will have a post viral syndrome which will recover within a few years naturally. That sort of thing has been known about for years and it is different from ME.

 

Oh no. Raelan Agle, Pamela Rose etc are all these ME/CFS coaches who have even recommended the Lightning Process or NLP. I actually have a lot of issues with them and their YouTube videos in my own ME/CFS group because people keep sharing their material. They think all those recovered patients are real patients representative of the disease and recovery is really possible if you do things just right (and I look like a real negative Nancy next to them). It doesn't help that the comment section below those videos is full of "satisfied customers", so these people do really give the impression that this is the real deal, patients you can trust because they know what they are talking about. (And they also have Facebook groups and you are blocked if you are too "negative", so not a lot of criticism there either.)

And yes, nowadays some of these coaches use the term pacing to lure patients in.

This is such an easy and pervasive trap for new patients, I wish more could be done about it.

 

Times journalism - Health

1. Health = Lifestyle

2. Times readers, Health = Lifestyle challenges

3. People poorer than Times readers, Health = Lifestyle choices

4. Times journalist qualification to write on Health = knowing someone who is a) facing a lifestyle 'challenge', b) knowing someone who can very expensively ease that challenge. Being a) = exceptional qualification.

 

https://twitter.com/user/status/1481207160633765892

 

I think this is referring to a paper that was posted a few weeks ago showing viral persistence in many organs. Or maybe another. Turns out there may just be something about that old germ theory of disease after all, or something like that.

Bad audio, maybe someone has a better version, basically Fauci describing some of the findings in a NIH study that is under review:

https://twitter.com/user/status/1481081957933015045

 

https://twitter.com/user/status/1481060430051438597

 

The account has been deleted.

 

Somewhat interesting but remains very superficial. It's been 2 years and everyone is still paralyzed, all entirely because of past failures that can't be acknowledged because they are a massive embarrassment.

It has some discussion of the arbitrary distinction of "organic" vs "functional" that, frankly, remains too superficial. This whole thing has been a complete disaster and the most intense reaction we see from people who witness its failure first-hand is barely a "hmmm, this isn't really ideal but whatcha gonna do?".

There's something funny about the fact that the Catholic church has asserted that the Pope is not infallible, while medicine still regularly publishes musings such as "uh, maybe we really don't know everything? who could have thunk?", then nothing changes and the same mindless thinking that created "functional" illness just keeps plowing through lives like the world's most efficient murder-and-mayhem-trolley.

https://twitter.com/user/status/1481223368091357184

 

She had a few comments about the BPS model that suggest she thinks this is basically never-before-tried stuff, completely unaware that it's the very reason for all the dysfunction and failure she explained in the article.

Understandable, even though it's been growing non-stop for decades, everything BPS is still about "promising" stuff, even though they are the same promises as decades ago and everything's been tried already. So anyone new to this could be mistaken thinking it's brand new and never been tried, we even have the inventors of this nightmare saying so, as if it's never been tried, even though they'd argue in the next breath about how much evidence there is. Ugh. It's really not ideal how weak journalism generally is.

 

what did her author's twitter thread have to say? I haven't read the Times article--it's behind a paywall.

 

@Dakota15 provided a link that opened the article:
https://www.thetimes.co.uk/article/...2?shareToken=0300a38a426b1cd859f4d8f722938150

The twitter thread was a good summary of a good article, until the services from a "pacing coach" was mentioned.

 

You might be able to access it with the link in this post

Screenshots of the thread

 

Francesca Steele implicitly shows us a profound problem with the very people she is turning to for help.

She herself says (now explicitly) that she was not only ashamed of her ignorance but also that she was dismissive of ME. She comes across as a reasonable and not unempathetic person yet nevertheless that was her view.

It points to the fact that it is hard to truly understand the reality and impact of this illness and the reality of trying to live life and get better. People who do not have this experience almost inevitably downplay and dismiss the severity of the illness and it's impact and what can realistically be done by the ill person. They don't know from experience and don't understand. And yet they offer their 'helpful solutions' as if they totally get it. They. Do. Not.