Defining Long COVID: going back to the start, 2021, Alwan and Johnson

Andy

Andy

Retired committee member
Abstract

“Long COVID” is the condition whereby affected individuals do not recover for several weeks or months following the onset of symptoms suggestive of COVID-19, whether tested or not [1]. The name Long COVID was created by the people experiencing it in Spring 2020 to describe their journeys of not recovering [2]. Here we offer a way to standardize its diagnosis through defining what constitutes initial infection with COVID-19.

Open access, https://www.cell.com/med/pdf/S2666-6340(21)00105-7.pdf
 
All efforts that treat Long Covid in complete isolation are doomed to fail. At this point it's not even the insult of pretending we don't exist, it's that this only serves to impair progress and cause harm.

Medicine does not accept the reality of chronic illness. Long Covid is a chronic illness. Long Covid will not be taken seriously by medicine as long as medicine openly discriminates against all types of chronic illness. This isn't especially hard, none of this is new, medicine has decades of experience cruelly dismissing this and there are far more efforts making it all worse, with the MUS crap, than efforts in the right direction.

At this rate the first 2 years are on their way to have been almost entirely wasted, it takes a long time to change course and it hasn't even begin yet. It's maddening.
 
But they're not going back to the start are they?

There are always core assumptions and if people persist in remaining blind to those then there are going to be problems.

Here we, the ME community, are, an abject lesson in precisely how to do it wrong. Still invisible. Heaven forbid lessons might be learned.
 
Invisible Woman said:
But they're not going back to the start are they?

There are always core assumptions and if people persist in remaining blind to those then there are going to be problems.

Here we, the ME community, are, an abject lesson in precisely how to do it wrong. Still invisible. Heaven forbid lessons might be learned.
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I suspect they will all be thrown on the same scrap heap in good time.

it won’t be long before these long COVID types will be blamed for sitting on their arse all day causing the rise in obesity as the “keep fit and avoid COVID” media machine kicks into gear.

I thought it was interesting that the BBC featured an item about prevalence of long COVID yesterday (Ons study). It was headlined at the beginning of the broadcast but was clearly given lower billing to other stories and when they actually featured it, it was a 45 second (or thereabouts) synopsis of the prevalence stats presented by a feature reporter. After finishing, the anchor just looked non plussed (possibly someone in her ear telling her to move on), thanked the editor, didn’t ask a question and just quickly moved on to another story about the royal family or whatever.

It was more than obvious that this was a topic not up for in depth discussion. I don’t normally shout at the tv but this was one of those occasions.

I think long COVID will be managed out of the mainstream news once they can talk about something else. Until then it’s a holding pattern until they can talk it away/work out how to blame the patients.

Failing that they will focus on those that have organ damage (I.e a worthy long term condition) and okay on pity/ battling through despite the odds type stories and not discuss the ME type long term fatigue people.

https://www.bbc.co.uk/news/health-56601911

I think the alarm bells are ringing that this is something they need to media manage ...I might be being too cynical of course...I hope I’m wrong :unsure:
 
arewenearlythereyet said:
it won’t be long before these long COVID types will be blamed for sitting on their arse all day causing the rise in obesity as the “keep fit and avoid COVID” media machine kicks into gear.
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There have been lots of reports during the pandemic of how people with good levels of vitamin D and zinc have had less severe Covid and have had had better survival rates. But I'm not aware of this really getting a mention in the mainstream media. Or at least it isn't emphasised in any way.
 
Weren't we all (CEV/shielding people in the UK) supposed to be getting free vitamin D?

Doesn't seem to be occurring, at least to me.

Probably in the same category as the millions of free laptops that school kids were supposed to get but largely didn't seem to, meaning that individuals and charities had to step up to fill the void.

Of course what they would supply, if they supply, is open to question, probably the cheapest they can find, so probably not a useful form of D3.
 
Arnie Pye said:
There have been lots of reports during the pandemic of how people with good levels of vitamin D and zinc have had less severe Covid and have had had better survival rates. But I'm not aware of this really getting a mention in the mainstream media. Or at least it isn't emphasised in any way.
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I often see zinc and vitamin d discussed in a whole range of conditions. I saw it recently somewhere ...I think it was work related so possibly about heart disease or other obesity related conditions ...it went on though to show there wasn’t a connection. Wish I could recall what it was...perhaps later I will remember?
I think the problem with zinc supplementation in particular is that it is so transitory for studying long term effects that most studies fail to show a really compelling and direct connection with anything in terms of long term health. We know what the effects of deficiency are with better certainty. The benefits of dose-related supplementation though is a bit more tricky (think there are some studies on diahorrea etc). I think the taste and smell thing is interesting though.
 
arewenearlythereyet said:
I saw it recently somewhere ...I think it was work related so possibly about heart disease or other obesity related conditions ...it went on though to show there wasn’t a connection.
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I'm sure there are a load of medical conditions for which vitamin D and zinc are not helpful, but I'm equally sure there are plenty of conditions for which they are useful. But I wouldn't trust doctors on the subject of nutrients anyway. They don't get any training on the subject and appear to firmly believe that deficiencies are the province of dieticians. At best, if you are found to have a low level of a vitamin or a mineral you might get enough prescribed to get your level into the reference range, or you are told to buy your own. But how often are nutrients tested? Very, very rarely indeed.

If lots of people improved their nutrient levels it might make them feel better and cut down on the pharma products people are prescribed. And we can't have that, can we?
 
Arnie Pye said:
deficiencies are the province of dieticians.
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And then we are all shunted down a rabbit hole ....I think nutrition is such a grey area ...there is this weird tension between medicine and food science ....even though you would think they would be synergistic, it’s just nasty politics mostly with medical doctors thinking they know what they are talking about and clearly being in the dark ages most of the time. And in the middle you have unregulated nutritionalists which love to dwell in the pseudoscience making a field day of the lack of cohesion.
 
Arnie Pye said:
On the subject of nutrition rather than nutrients this article may be of interest.

Title : We learn nothing about nutrition, claim medical students

https://www.bbc.co.uk/news/health-43504125
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Yes I agree in principle, but I would say that at least two of the doctors mentioned in the link that are calling for better education are prime examples of doctors (former doctors mainly) who are spreading misinformation about diet and lifestyle. So what hope do we have? ...a bit like taking advice from Jamie Oliver ....it’s mostly social media nonsense centred around selling more books.

it would be good to have some kind of independent research centre that brings medical and food science research together allowing balanced policy making to take place, in a way that is better than PHE was. The replacement headed up by Witty just fills me with dread. From what I’ve heard on the grapevine it’s going to be more about diverting blame away from medicine and holding court, not finding proper solutions based on evidence and real science. Be prepared for more patient blaming and food industry bashing with stringent controls put in place that controls what people can eat and how they should live their lives whilst recycling old memes and patronising guidelines rather than supporting proper scientific research to actually help patients. I think the exiting chair of the food and drink federation put it nicely ...”it’s going to be about middle class men telling working class people what to do”

It’s going to be pretty grim if what I’ve heard over the last 2 weeks comes to fruition.
 
Dr. William Li is a regular guest on CNN, he talks a lot about using supplements and nutrition to treat LC and disease.

I decided to look him up:
About Dr. William Li
William W. Li, MD, is a world-renowned physician, scientist, speaker, and author of EAT TO BEAT DISEASE – The New Science of How Your Body Can Heal Itself. He is best known for leading the Angiogenesis Foundation. His groundbreaking work has impacted more than 70 diseases including cancer, diabetes, blindness, heart disease, and obesity. His TED Talk, “Can We Eat to Starve Cancer?” has garnered more than 11 million views, and he has appeared on: Good Morning America, CNN, MSNBC, NPR, Voice of America; and in The Atlantic, TIME, and The New York Times. An author of over 100 scientific publications in leading journals such as Science, the New England Journal of Medicine, and The Lancet, Dr. Li has served on the faculties of Harvard Medical School,
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https://drwilliamli.com/
 
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