Long Covid in the media and social media 2023

Video mentions ME/CFS from B.C, Canada Dr. Birinder Narang just after 2:52 minutes:

 

I didn’t listen to it all. I didn’t hear mention of ME/CFS at 2:52 but did at 3:29.

 

https://twitter.com/user/status/1614413111796301825


Centers for disease promotion, I guess.

 

https://twitter.com/user/status/1614056170062491649

 

I was curious about how the question about disability is worded, it's explained here: Long COVID Household Pulse Survey

 

That's a lot of people who ever experienced long covid. If they knew it could come back to bite them....

 

For long covid fatigue, a strategy called ‘pacing’ helps, but at a cost
Taking a lesson from people with chronic fatigue, many patients with long covid are scaling back daily activity to cope

What is it like to live with the chronic fatigue of long covid?
It feels like dragging your body through wet cement, says Judy Schaefer, 58, a once avid hiker who lives in Seattle.
It’s knowing that simple tasks like showering or cooking dinner, will be exhausting, says Alyssa Minor, 36, a physiotherapist in Calgary.
It’s trying to exercise and instead, landing in the ER, says Harry Leeming, 31, of London.

Experts say the extreme fatigue experienced by many long covid patients has a name: myalgic encephalomyelitis (ME/CFS), a condition previously known as chronic fatigue syndrome. Researchers estimate that about half of people with long covid have developed ME/CFS.

There is no known cure for ME/CFS, but some experts say a complicated lifestyle change can help manage some of the symptoms. It’s called “pacing.”

Pacing is an “activity management” strategy, which requires people to carefully limit their daily activities, reduce their energy expenditure and track their symptoms.

But pacing is difficult. It often requires scaling back on mundane tasks that most people take for granted, like rinsing dishes or chopping vegetables. And it means finding ways to reduce energy expenditure and effort — such as creating water and snack stations around the house to reduce trips to the kitchen. Even showering or picking children up from school can be debilitating for those with ME/CFS.

https://www.washingtonpost.com/wellness/2023/01/16/long-covid-fatigue-pacing/



Thread suggesting action regarding the article in Advocacy Projects here:
2023 Washington Post article: 'For Long Covid fatigue, a strategy called 'pacing' helps, but at a cost

 

It's good except for the fact they interviewed Peter White to both-sides it.

 

Oh, FFS I wasn't sure but they actually did it. PACE did not evaluate pacing as the patients mean it. Or evaluate anything, really. It's not even valid to bring it up here, their adaptive pacing thing is not pacing and it's not even a treatment anyway, it's not meant to be used this way.

 

Posting a gift link for the Washington Post article for anyone who runs into a paywall:

https://wapo.st/3GLDrJQ

On balance I think the good parts of the article outweigh the bad.

But, yeah, I can't believe they included a quote from Peter White.

 

Can ‘Radical Rest’ Help With Long COVID Symptoms?
Jan. 18, 2023 – On March 18, 2020, Megan Fitzgerald was lying on the floor of her Philadelphia home after COVID-19 hit her like a ton of bricks. She had a fever, severe digestive issues, and she couldn’t stand on her own. Yet there she was, splayed out in the bathroom, trying both to respond to work emails and entertain her 3-year-old son, who was attempting to entice her by passing his toys through the door.

She and her husband, both medical researchers, were working from home early in the pandemic with no child care for their toddler. Her husband had a grant application due, so it was all-hands-on-deck for the couple, even when she got sick.

There’s growing evidence that overexertion and not getting enough rest in that acute phase of COVID-19 infection can make longer-term symptoms worse.

“The concept that I would be too sick to work was very alien to me,” Fitzgerald says. “It didn't occur to me that an illness and acute virus could be long-term debilitating.”

Her story is common among long COVID-19 patients, not just for those who get severely ill but also those who only have moderate symptoms. It’s why many medical experts and researchers who specialize in long COVID rehabilitation recommend what’s known as radical rest – a term popularized by journalist and long COVID advocate Fiona Lowenstein – right after infection as well as a way of coping with the debilitating fatigue and crashes of energy that many have in the weeks, months, and years after getting sick.

https://www.webmd.com/covid/news/20230118/can-radical-rest-help-long-covid-symptoms?src=RSS_PUBLIC

 

It is so frustrating that we don’t have any data about whether ‘radical rest’ is helpful or not. It really should have been addressed decades ago for ME.

It seems to me the options are:

1. Rest is harmful to us
2. Rest has no impact on the short term or long term course of the condition
3. Rest is necessary to avoid triggering PEM, short term worsening
4. Rest is necessary to avoid long term system exacerbation
5. Appropriate rest levels is necessary to allow maximal functioning within an individual’s current activity limits
6. Rest/pacing creates the best circumstances to allow any spontaneous recovery to occur, may be within upper activity limit, may vary with where the individual is at within the course of their underlying condition
7. Rest actively promotes recovery

The PACE true believers would argue that 1 is the case, but decades of their research into GET/CBT has produced no evidence that they are able to get us sustainably more active or that increasing activity results long term in any improvement in the underlying condition.

Most people with ME would argue that their experience is consistent with 1 and 2 being false and 3, 4 and 5 being true. We would argue that our experience indicates incontrovertibly that rest as part of activity management is necessary to avoid either short term or long term deterioration. Survey evidence of harm arising from GET/CBT could also be seen as in directed evidence for 3, 4 and 5 being true.

What might be harder to obtain any consensus about is for 6 or 7, whether rest can be used to ultimately increase activity, though worryingly specialist services are increasingly heading towards the idea of ‘pacing up’. We lack any evidence relating to 6 or 7.

 

Do we have a thread on 7 - anecdotes and results from people who experimented with long term complete rest?

 

Article by Katherine J. Wu on antiviral treatment to reduce chances of developing Long Covid

The Atlantic: Trying to Stop Long COVID Before It Even Starts

quote:

For anyone who is newly infected, “we don’t have any interventions that are known to work,” says Akiko Iwasaki, an immunologist and long-COVID researcher at Yale.

Some researchers are hopeful that the forecast might shift soon. A pair of recent preprint studies, both now under review for publication in scientific journals, hint that two long-COVID-preventing pills might already be on our pharmacy shelves: the antiviral Paxlovid and metformin, an affordable drug commonly used for treating type 2 diabetes. When taken early in infection, each seems to at least modestly trim the chance of developing long COVID—by 42 percent, in the case of metformin. Neither set of results is a slam dunk.

 

This should also be advised to post-infectious COVID patients with little or no symptoms remaining.

 

I hope not a lot of resources get wasted on this because it's a complete dead-end with a policy of mass reinfection combined with a virus that can be asymptomatic or so mild it's barely noticeable. The only way this would work would be if this were given to everyone, every time they got ill, which is fantasy.

As a research lead, definitely, but using this in real life this way as prophylactic is nonsense. If it's validated, we need to study this to know how it does this, to target the underlying mechanism in an investigative process, not the current everyone-working-in-isolation on their small thing with zero coordination with anyone.

 

I agree. The best way to avoid Long Covid must be to avoid Covid.

I wonder if excessive use of antivirals may have the same problems as with antibiotics? Can a virus mutate into becoming more resilient to antivirals?

 

BBC Radio 4 Woman's Hour - Long Covid: Is it being de-prioritised?

My wife and I did not catch all of this, but my wife caught part of it where a 45 year old woman says she has had to give up work and struggling to get by, because she just feels so ill and shattered all the time. And that when she goes to her doctor he just gives her anti-depressants and tells her to keep herself moving.

https://www.bbc.co.uk/programmes/p0dxqqx0