WebMD: Without Guidelines, Docs Make Their Own Long COVID Protocols

Sly Saint · Nov 23, 2022

Nov. 22, 2022 – Diagnosing long COVID is something of an art for doctors who, without any formal criteria, say they know it when they see it. Treating the condition requires equal combinations of skill, experience, and intuition, and doctors waiting for guidelines have started cobbling together treatment plans designed to ease the worst symptoms.

Their work is urgent. In the U.S. alone, as many as 29 million people have long COVID, according to estimates from the American Academy of Physical Medicine and Rehabilitation.

“Patients with long COVID have on average at least 14 different symptoms involving nine or more different organ systems, so a holistic approach to treatment is essential,” says Janna Friedly, MD, executive director of the Post-COVID Rehabilitation and Recovery Clinic at the University of Washington in Seattle.

For acute COVID cases, the National Institutes of Health has treatment guidelines that are taking a lot of the guesswork out of managing patients’ complex mix of symptoms. This has made it easier for primary care providers to manage people with milder cases and for specialists to come up with effective treatment plans for those with severe illness. But no such guidelines exist for long COVID, and this is making it harder for many doctors – particularly in primary care – to determine the best treatment.

While there isn’t a single treatment that is effective for all long COVID symptoms – and nothing is approved by the FDA specifically for this syndrome – doctors do have tools, Friedly says.

“We always start with the basics – making sure we help patients get enough restorative sleep, optimizing their nutrition, ensuring proper hydration, reducing stress, breathing exercises, and restorative exercise – because all of these are critically important to helping people’s immune system stay as healthy as possible,” she says. “In addition, we help people manage the anxiety and depression that may be exacerbating their symptoms.”

Fatigue is an obvious target. Widely available screening tools, including assessments that have been used in cancer patients and people with chronic fatigue syndrome, can pinpoint how bad symptoms are in long COVID patients.
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link for 'chronic fatigue syndrome' goes to the NICE guidelines.......unfortunately 2007 page...but at least now it says in a large banner on the page

"Guidance

This guideline has been updated and replaced by NICE guideline NG206. "

https://www.webmd.com/lung/news/20221122/docs-make-their-own-long-covid-protocols

the article goes on to say:

“Traditional exercise programs may be harmful to some patients with long COVID,” says Verduzco-Gutierrez. “Many cannot tolerate graded exercise [where exertion slowly ramps up], and it actually can make them worse.”
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RedFox · Nov 23, 2022

Sound guidelines are badly needed, but the they will be mostly symptom management unless we continue increasing funding for treatment trials. They also need to consider the heterogeneity of Covid-19 sequelae. Someone whose muscles wasted away from 3 weeks in a coma will benefit from exercise but someone with PEM won't.

rvallee · Nov 23, 2022

Fatigue is an obvious target. Widely available screening tools, including assessments that have been used in cancer patients and people with chronic fatigue syndrome, can pinpoint how bad symptoms are in long COVID patients.
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It sure is true that they are widely available and have been used. They are essentially useless, but it sure is true that they have been used.

“We always start with the basics – making sure we help patients get enough restorative sleep, optimizing their nutrition, ensuring proper hydration, reducing stress, breathing exercises, and restorative exercise – because all of these are critically important to helping people’s immune system stay as healthy as possible,” she says. “In addition, we help people manage the anxiety and depression that may be exacerbating their symptoms.”
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All this stuff most patients can do easily. It's everything else they can't. Stop wasting professional resources on amateur stuff that nearly everyone manages on their own. This is not what any of this is about.

But linking to the deprecated guidelines cannot be excused as an oversight, it was deliberate. Absurd. Genuinely 1984 level of ignoring the record.

DokaGirl · Nov 23, 2022

Why are the 2007 NHS guidelines even available to link to?

Shouldn't these be deleted?

What's the time limit on retaining incorrect, harmful guidance?

NelliePledge · Nov 24, 2022

So NICE kept the url for the old 2007 CFS/ME guidelines but now it just acts as a landing page with no content just a redirect to the live 2021 ME/CFS guidelines.

which means any links in papers referencing the old guidelines take people to the new. So anyone persisting in referring to the old is wasting their time.
https://www.nice.org.uk/guidance/CG53

A win for the new guidelines

rvallee · Nov 24, 2022

Ah, well, at the very least there is no confusing the fact that those guidelines have been deprecated, the message makes up the whole page. That's good.

Which says either of two things: no one checked, or no one cares. The person who wrote this could not have possibly been mistaken about the page being only a message that says it's deprecated, so clearly they don't care. Frankly both options are the same.

Healthcare would benefit so massively from software development practices. We solved all of those issues already, this is frankly silly, linking to a deprecated version of something should throw an automated error. What a waste of good practices just because the bubble is an echo chamber.

NelliePledge · Nov 25, 2022

Well NICE could have just put in a straight redirect to the new guidelines. But it’s good at least for a while that people are told the old ones are defunct. In my old job we wouldn’t have still had people going through the landing page 12 months later. but as we’ve seen this new guideline is probably only just beginning to dawn on people within the system so making it clear the old one is defunct is probably still needed.

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WebMD: Without Guidelines, Docs Make Their Own Long COVID Protocols

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