Long Covid in the media and social media 2022

[Andy]

Today 19.32
'The Guardian view on long Covid: an unknown enemy'
Editorial

https://www.theguardian.com/comment...-guardian-view-on-long-covid-an-unknown-enemy

"In many regards, long Covid has echoes of existing autoimmune diseases and (usually post-viral) conditions such as ME/CFS, which are complex, poorly understood, hard to diagnose and tough to treat. The biggest difference may be that Covid’s seriousness and its spread have ensured greater attention and resources this time; patients with ME/CFS and some autoimmune illnesses who have long complained about the lack of interest and investment in research hope that it may lead to breakthroughs that could help them."

 

[NelliePledge]

"In many regards, long Covid has echoes of existing autoimmune diseases and (usually post-viral) conditions such as ME/CFS, which are complex, poorly understood, hard to diagnose and tough to treat. The biggest difference may be that Covid’s seriousness and its spread have ensured greater attention and resources this time; patients with ME/CFS and some autoimmune illnesses who have long complained about the lack of interest and investment in research hope that it may lead to breakthroughs that could help them."

is the penny finally starting to drop at the Grauniad??

 

[Lou B Lou]

is the penny finally starting to drop at the Grauniad??

Not for some in the Comments it appears. Not content with gaslighting themselves, one commenter is patronisingly gaslighting us too:

"physical symptoms may break your body but the catalyst was always psychological.

The brain will always work to keep your body safe

ie my brain decided I needed taken out to ensure I couldn’t keep going at the rate I was. So that meant ensuring I lost my ability to walk for a few weeks: that kept me in bed: when I tried I was knocked back, my brain was stopping me returning to the expected level of support to my family and to the stressful environment at work.

It was only when I could work out the exact psychological issues that gave me agony and took me out that I was able to start healing.

It’s psychologically based. Face up to what you’re scared of, what your clever brain is trying to stop you from doing. Then as best as you can, work on your wellbeing and accept you’ll have knock backs.

These conditions are all in your head but not in the way that sounds, remember your brain is trying to save you.....
to deny the interaction of (well buried) psychological impacts on physical ailments is amazingly naïve

..... Remember I have been suffering exactly what you believe only you special people have got for over 7 years now".


Gobsmackingly arrogant.

 

[Art Vandelay]

An Australian news story about a "post-covid clinic" in a private hospital (from what I could tell from the story, the public hospitals in Queensland don't have LC clinics as yet).

As expected, there's a "multidisciplinary team" comprised of various quack specialities recommending what looks very much like graded exercise and other pointless idiocy:

Inside Brisbane's post-COVID clinic | 7NEWS



Note the first "graduate" of the course at the end of the story. She doesn't look at all well to me. Although I'm sure that the team will claim her as a patient who has successfully recovered.

 

[NelliePledge]

Not for some in the Comments it appears. Not content with gaslighting themselves, one commenter is patronisingly gaslighting us too:

"physical symptoms may break your body but the catalyst was always psychological.

The brain will always work to keep your body safe

ie my brain decided I needed taken out to ensure I couldn’t keep going at the rate I was. So that meant ensuring I lost my ability to walk for a few weeks: that kept me in bed: when I tried I was knocked back, my brain was stopping me returning to the expected level of support to my family and to the stressful environment at work.

It was only when I could work out the exact psychological issues that gave me agony and took me out that I was able to start healing.

It’s psychologically based. Face up to what you’re scared of, what your clever brain is trying to stop you from doing. Then as best as you can, work on your wellbeing and accept you’ll have knock backs.

These conditions are all in your head but not in the way that sounds, remember your brain is trying to save you.....
to deny the interaction of (well buried) psychological impacts on physical ailments is amazingly naïve

..... Remember I have been suffering exactly what you believe only you special people have got for over 7 years now".


Gobsmackingly arrogant.

Sounds like something Garner would write

 

[Laurie P]

https://abcnews.go.com/Health/government-reports-long-covid-lay-existing/story?id=87824116

New government reports on long COVID lay out existing help, what more should be done

ABC News spoke with Dr. Rachel Levine, the top HHS official leading the effort.


The federal government took an initial step forward in its response to long COVID-19 Wednesday, releasing two reports that compile what federally-funded services are available to people already suffering from the condition, and what research efforts are still needed to better understand how to address it.

"These are initial reports. They're a significant step, but they're one step," said Dr. Rachel Levine, the U.S. assistant secretary for health for the U.S. Department of Health and Human Services, in an interview with ABC News.

"And the work begins tomorrow, as we work on the implementation of the recommendations to the report moving forward," Levine said.

The reports stemmed from a presidential memorandum issued by President Joe Biden in April, which created an interagency task force on long COVID headed up by HHS Secretary Xavier Becerra and Levine, who will now oversee a new office specifically focused on long COVID at the department.

The HHS Office of Long COVID Research and Practice "will be charged with the implementation" of both plans produced by HHS and updating both regularly -- but doing so will hinge on funding for staff and operations in the next annual budget.

https://www.covid.gov/longcovid

Read the Memorandum on Addressing the Long-Term Effects of COVID-19.

Read the White House Fact Sheet on the Biden Administration efforts on Long COVID.

There are also additional links under the headings:

SERVICES AND SUPPORTS FOR PEOPLE EXPERIENCING LONG COVID

LONG COVID RESEARCH

Post copied to a new thread:United States: Government Memorandum on Addressing the Long-Term Effects of COVID-19

 

[Dolphin]

NIH tweet for what it is worth:

.

 

[Wonko]

I was under the impression that being fully vaccinated/boostered up had been shown to provide absolutely no protection against long covid.

I'm also under the impression that being fully vaccinated/boostered up provides no protection against catching covid, only against hospitalisation.

Maybe I'm out of date?

 

[LarsSG]

In round numbers, I think the latest data shows about 50% protection against infection from a recent booster. Protection against Long Covid is harder to quantify, but probably around 50% according to ONS data. Some studies have shown a lot lower protection against LC (particularly the Al-Aly VA paper), but most of those papers don't seem to be measuring Long Covid very well, so it's a stretch to draw any conclusions about vaccine protection from them. I think some people think LC will get more attention if they claim that vaccines don't help, so they tend to amplify studies that don't show any benefit, even if those studies are not very good.

Combining the two, the risk of Long Covid is probably reduced by about 75% with a recent booster. Not amazing, but a lot better than nothing.

 

[Tom Kindlon]

"Long COVID" by The Pennsylvania Society for Post-Acute and Long-Term Care Medicine

https://www.pamda.org/longcovid.html

.

 

[SNT Gatchaman]

Tragicomic responses in this Twitter thread that will be familiar ground for the forum. Some examples —

When my HR goes from 90 sitting to 140 standing for 20secs and back to 90 sitting. Dr: "How are you actually doing that?" Me: "If I could control it I wouldn't be here"

GP telling my 18 year old daughter that post viral illness is nothing new (true) & all would be well in a few weeks, as I'm sat there 25 years on from a virus that caused ME/CFS & MS, possibly from EBV. Believe me, I've been told a lot worse over those years!

A cardiologist told me all I needed to do was lose weight and my heart would stop jumping to 180. I was 86 pounds.

- I can see you’ve been diagnosed with POTS, but that doesn’t have anything to do with Long Covid. - But I’ve never felt like this before! - This is impossible! You were born with it and you’ve always had it, you just didn’t notice it. [Long Covid Clinic, phone assessment]

ENT - "I'm seeing a lot more cases of tinnitus lately. Probably the result of stress from the pandemic. I believe it will resolve once we get rid of masks."

Over 2yrs in, a consultant who is part of Long Covid service asked me, ‘What is PEM?’, having seen it on my list of symptoms/issues. When I said ‘Post exertion malaise’, I received a blank look. I explained, but it was clearly a totally new concept to them.

Cardiologist: Do you go out for walks? it's important in the lockdown
Me: not much I have PEM after I walk more than 15 mins
Dr: that's strange ..I've never heard of any other person with LC reporting that..
Me: indeed! only on the LC support group of 35,000 we all have it!

Me: I think I have something called MCAS, can you refer me to a specialist?
Dr: well no, that’s rare.
Me: It’s been a year, I want to get better and go back to work.
Dr: Here’s a prescription for an anti depressant. And make sure to eat healthy and have positive thoughts.

 

[RedFox]

Katy Bach on Twitter: Important note on the new White House long Covid report! It mentions that ~1M ppl may be out of work due to LC. That is based on a Brookings Institute report I wrote 8 months ago. I am currently updating the figures — now that we have more data, we know it’s actually 2-4M+

 

[Amw66]

That thing about people thinking they're recovered..... .

 

[Wyva]

Katy Bach on Twitter: Important note on the new White House long Covid report! It mentions that ~1M ppl may be out of work due to LC. That is based on a Brookings Institute report I wrote 8 months ago. I am currently updating the figures — now that we have more data, we know it’s actually 2-4M+

Here in Hungary you couldn't read literally anything about people being out of work long-term due to long covid until now. The media is really not that much interested in long covid here. But now a few days ago I saw an article about our healthcare system being on the brink of collapse due to a shortage of doctors (to be honest, it is always on the brink of collapse, but I guess now even more so).

There were actually three main reasons for this shortage but one thing mentioned was the doctors and healthcare workers who are missing from healthcare now due to long-term covid problems (and also who died of covid). Unfortunately this was more like a mere footnote and the Chamber of Doctors was asking for things like reorganization to better fill these gaps and higher salaries in certain fields etc. The problem of not being able to work was not addressed at all even by them. It was quite disappointing.

But now at least there are some signs even here that things are not right.

My "dream" would be to see a doctor with long covid to step up and start talking about their experiences. But I guess they don't due to the same reason why they don't step up if they have ME/CFS (not even within my own group, but they are there).

 

[Snow Leopard]

My "dream" would be to see a doctor with long covid to step up and start talking about their experiences. But I guess they don't due to the same reason why they don't step up if they have ME/CFS (not even within my own group, but they are there).

Most likely they're in denial about it being a long-term condition - they think their recovery is just around the corner and they don't want all the nonsense that comes with a functional diagnosis.

 

[perchance dreamer]

Yesterday, my hairdresser told me she's had 7 clients with long covid who are experiencing noticeable hair loss. What an excellent extra motivation for doing everything possible not to contract covid!

 

[John Mac]

Yesterday, my hairdresser told me she's had 7 clients with long covid who are experiencing noticeable hair loss. What an excellent extra motivation for doing everything possible not to contract covid!

Could that be a pointer to micro blood clots or at least poor blood flow in the capillaries?
Treatments for hair loss include Minoxidil which is a vasodilator.

 

[perchance dreamer]

Could that be a pointer to micro blood clots or at least poor blood flow in the capillaries?
Treatments for hair loss include Minoxidil which is a vasodilator.

I don't know the cause, but what the possibilities you mentioned sound plausible. My hairdresser's clients who've experienced significant hair loss are all women with long covid. I'll ask her if any have improved and, if so, how long it took.

 

[SNT Gatchaman]

My hairdresser's clients who've experienced significant hair loss are all women

There have been some dramatic TikTok videos posted. The actress Alyssa Milano posted a video in 2020 and it was discussed a few months ago on Good Morning America.

 

[Sly Saint]

Merged thread.

..........

This debilitating fatigue has become familiar to millions of Americans with long COVID.

Scientists are racing to understand it, and they’re discovering it isn’t new. The symptoms of long COVID are almost identical to a condition known for decades: ME/CFS, or myalgic encephalomyelitis/chronic fatigue syndrome, which causes an overwhelming fatigue that doesn't get better with rest. Understanding the connections between these two diseases could be key to helping people suffering from both.

“They are the same disease — or very, very similar,” said Dr. Liisa Selin, a viral immunologist and professor at UMass Chan Medical School.

Selin studies the immune system. She also knows the devastating impact of chronic fatigue: She has lived with ME/CFS for 47 years.

When her condition flares up, she has trouble getting out of bed, walking and talking. Recovery takes time.

“With every severe episode that I've had, I do feel like the walking dead,” she said. “And I do feel like I've come back, basically, from being dead each time.”

Selin often experiments on herself. A couple years ago, she looked at a sample of her own blood and found some immune cells behaving strangely. Later, when she looked at the blood of long COVID patients, she found the same phenomenon. The immune cells appeared exhausted from working too hard.

She thinks immune cell dysregulation is causing her disease, as well as long COVID. Selin is trying to expand her research, though attracting funding is always a struggle.

“What motivates me to keep going is that I think I know the answer now,” she said. “And I really sincerely do not want other people to have the life I've had. If there's anything I can do to change that, I am determined to do it.”

full article
https://www.wbur.org/news/2022/08/08/mystery-long-covid-chronic-fatigue-research