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

Copied across from https://www.s4me.info/threads/evide...ifferent-from-me-cfs.23834/page-2#post-401386

DC and HHS pages on Long COVID make it very clear that at least from the US Gov perspective LC is a clinical concept wholly separate from ME/CFS

CDC.gov Post-COVID Conditions: Information for Healthcare Providers

https://www.cdc.gov/coronavirus/201...019-ncov/hcp/clinical-care/late-sequelae.html

Includes:

"Post-COVID conditions are being referred to by a wide range of names, including long COVID, post-acute COVID-19, long-term effects of COVID, post-acute COVID syndrome, chronic COVID, long-haul COVID, late sequelae, and others, as well as the research term post-acute sequalae of SARS-COV-2 infection (PASC).external icon Although standardized case definitions are still being developed, in the broadest sense, post-COVID conditions can be considered a lack of return to a usual state of health following acute COVID-19 illness. Post-COVID conditions might also include development of new or recurrent symptoms that occur after the symptoms of acute illness have resolved."

...............................................

"We use post-COVID conditions as an umbrella term for the wide range of health consequences that are present four or more weeks after infection with SARS-CoV-2. The time frame of four or more weeks provides a rough approximation of effects that occur beyond the acute period, but the timeframe might change as we learn more.

It can be difficult to distinguish symptoms caused by post-COVID conditions from symptoms that occur for other reasons. Patients experiencing the acute and post-acute effects of COVID-19, along with social isolation resulting from COVID-19 pandemic prevention measures, frequently suffer from symptoms of depression, anxiety, or mood changes. Alternative reasons for health problems need to be considered, such as other diagnoses, unmasking of pre-existing health conditions, or even SARS-CoV-2 reinfection. For clinicians considering whether new symptoms could be explained by reinfection, please refer to the CDC guidance on investigating suspected reinfection."


HHS.gov Guidance on “Long COVID” as a Disability Under the ADA

https://www.hhs.gov/civil-rights/fo...ovid-disability/index.html#footnote10_0ac8mdc

Includes:

"1. What is long COVID and what are its symptoms?

According to the Centers for Disease Control and Prevention (CDC), people with long COVID have a range of new or ongoing symptoms that can last weeks or months after they are infected with the virus that causes COVID-19 and that can worsen with physical or mental activity.

Examples of common symptoms of long COVID include:

• Tiredness or fatigue
  • Difficulty thinking or concentrating (sometimes called “brain fog”)
  • Shortness of breath or difficulty breathing
  • Headache
  • Dizziness on standing
  • Fast-beating or pounding heart (known as heart palpitations)
  • Chest pain
  • Cough
  • Joint or muscle pain
  • Depression or anxiety
  • Fever
  • Loss of taste or smell

This list is not exhaustive. Some people also experience damage to multiple organs including the heart, lungs, kidneys, skin, and brain"

...........................................

"a. Long COVID is a physical or mental impairment

A physical impairment includes any physiological disorder or condition affecting one or more body systems, including, among others, the neurological, respiratory, cardiovascular, and circulatory systems. A mental impairment includes any mental or psychological disorder, such as an emotional or mental illness.

Long COVID is a physiological condition affecting one or more body systems. For example, some people with long COVID experience:

• Lung damage

• Heart damage, including inflammation of the heart muscle

• Kidney damage

• Neurological damage

• Damage to the circulatory system resulting in poor blood flow

• Lingering emotional illness and other mental health conditions

Accordingly, long COVID is a physical or mental impairment under the ADA, Section 504, and Section 1557."
...........................................

"Long COVID can substantially limit a major life activity. The situations in which an individual with long COVID might be substantially limited in a major life activity are diverse. Among possible examples, some include:

• A person with long COVID who has lung damage that causes shortness of breath, fatigue, and related effects is substantially limited in respiratory function, among other major life activities.

• A person with long COVID who has symptoms of intestinal pain, vomiting, and nausea that have lingered for months is substantially limited in gastrointestinal function, among other major life activities.

• A person with long COVID who experiences memory lapses and “brain fog” is substantially limited in brain function, concentrating, and/or thinking."

 

The article was posted but I hadn't noticed it's on the front page. Maclean's is widely read in Canada.

https://twitter.com/user/status/1480653433275400194

 

Some discussion of the same study. Probably deserves its own thread, but in summary.


Mild respiratory SARS-CoV-2 infection can cause multi-lineage cellular dysregulation and myelin loss in the brain
https://www.biorxiv.org/content/10.1101/2022.01.07.475453v1

TL;DR: neuro"inflammation", aka microglia are doing something, possibly involving chemokines (a type of cytokines).


https://twitter.com/user/status/1480921292018753538

https://twitter.com/user/status/1480939466294370307

 

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.