Long Covid in the media and social media 2023

[Mods feel free to move most applicable, but sharing as ME/LC advocates in Minnesota secured funding measures passed in state legislation last May through multiple rounds of testimonies & written advocacy, a hopeful pathway to more federal progress]

Just sharing that Minnesota Department of Health's (MDH) Long COVID program announced today they are hiring a supervisor, their first announcement after the funding measures. The position was posted today & will be up for one week.

Per MDH: "In the coming weeks and months, we will be hiring several more positions in the areas of planning, grants/contracts management, communications, and epidemiology."

"Working Title: Long COVID Program Supervisor | Job Class: State Program Administrator, Director | Agency: Health Department"

https://twitter.com/user/status/1701622613380944259

 

BMJ: What happens inside a long covid clinic?
https://www.bmj.com/content/382/bmj.p1791
7 September 2023

Shows how there has been zero progress, despite us having been right all along. At least some are moving away from the reconditioning model, advising pacing with the caveat that it's not really a treatment, but it's absurd that we are still fighting this very thing while this is loosely being recognized. Especially with this being published in the BMJ, while we're having to deal with disinformation from a BMJ publication, in the JNNP and their "8 anomalies" editorial.

This could have been written 3 years ago. Or 30. Breakthroughs will come from research. The clinical model doesn't work at developing solutions here. Even though they're advising pacing, they still calling it rehab, which is just incorrect.

Ravindran came to lead the assessment clinic because of an early interest in long covid and a recognition that many patients with the condition suffer with pain and fatigue. He was aware that there could be some similarities with conditions he already managed, such as chronic fatigue syndrome and fibromyalgia.

“We realised early on that patients are going to have a variety of symptoms that need to be supported in an integrated manner,” he says. “Initially we thought it was going to be patients coming from intensive care, but more than 80% never went to hospital. These are often people who were fit and healthy, who should be working and who often have caring responsibilities.”
...
After assessment, patients then move on to the rehab section of the pathway, which is based in the community and typically involves six sessions with a physiotherapist.

Harriet Wilkinson, an advanced physiotherapist in the clinic, says these sessions teach patients about the condition and approaches such as pacing, which help them manage their limited energy.
...
With most conditions, advice usually encourages patients to be as active as possible. “Everyone with long covid has tried that—they have tried to go out there and really push themselves and it’s not worked. If anything, they’ve made themselves worse,” she says. “Here we advise they pace themselves, slow down and pull back.”​

And so have we. And we told you so. But we were attacked for it, demonized, maligned, lied about and lied to. For decades. We were attacked in the media, in academic publishing, including the BMJ, a former editor-in-chief of theirs literally compared us to Nazis for it. We still are being attacked for it, insulted, disrespected.

Still, there doesn't seem to be any concern that this happen, or is continuing to happen. No one takes responsibility. They don't have to, and that's the problem.

 

Dr Amy Small was a long Covid patient who became (and maybe still is) an ME ally. I think she is recovered now.

 

My LC Clinic refers everyone to a respiratory physio. She diagnoses every single person with a disordered breathing pattern and gives them exercises to do. She told me this.

I went along with this initially to see what would happen. The diagnosis was done by Zoom call. She does see some patients in person but not many. Claims that the muscles around the diaphragm have become weak due to only using the muscles at the top because people aren't breathing properly.

There are no tests done and it's not even a proper physical examination (at least in my case).

As some of you know I already have experience in this area (the infamous Dr Nixon of Charing Cross hospital). I was able to demonstrate to her that not did I know the exercises but I knew how to breath.

Apparently I am 'unusual' and 'all her patients' are being helped by breathing exercises.

Thus approach is right through all the LC groups I belong to with quite loud and emotionally charged claims being made by people. When asked they all claim their breathing is much better but very few people are connecting this to any improvement in their health.

When asked some then change it to an improvement in their anxiety, which is not what my clinic is pushing it for.

 

The ease with which this complete nonsense was accepted as valid is terrifying. I don't think anyone could actually point to any credible evidence, or even explain what it means, and yet it's basically accepted as a solid fact. Only using muscles at the top? What even is this foolishness?

I don't even understand what it's supposed to mean. This is not even a thing. If people's diaphragm is injured, then show it: where is the evidence? But that's not what's they claiming. They're saying that people aren't breathing properly, breathing "dysfunctionally". Which is pure nonsense. It's a reflex. People in a coma can breathe fine.

For high performance athletes? Sure. There are breathing patterns that will affect performance under high strain, at the limits of human endurance and biomechanics. But this is not even close to what we are talking about. It's as asinine as the idea that people aren't being active properly, or need coaching, motivation or training to do simple things like cooking a simple meal.

But it all just got accepted without any evidence, without any pushback. And yet they keep pushing back against reasonable things because the evidence that's out there doesn't satisfy them. Those double standards are infuriating.

 

Svensk studie letar bot mot Post Covid (audio, 2 minutes)
https://sverigesradio.se/artikel/svensk-studie-letar-bot-mot-post-covid

No mention of what drug it is or what the study is called.

I tried unsuccessfully to find it in the university's list of current research studies.

ETA: It's Paxlovid, according to a recent TV interview.

 

Opinion article: Long Covid is a new name for an old syndrome

"Long Covid is really not new. It is virtually indistinguishable from the condition long known in the medical lexicon as post-infectious syndrome or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Although some have recognized and studied their similarities, it seems no one has made the simplifying observation that they are essentially the same condition.

In the ME/CFS paradigm, long Covid is not a new condition. Logic and reason dictate that acute SARS-CoV-2 infection causes long Covid.

Or, more accurately, acute Covid-19 triggers ME/CFS in the same way many other infectious agents trigger ME/CFS. “Triggers” means a temporal association, but not “cause” in a mechanistic sense — at least not identifiable with currently available scientific tools. This hypothesis has major policy, research, and patient-care best practice implications. It’s our most direct path forward to reset society’s goals, strategies, and expectations for true progress against this public health catastrophe."

https://www.statnews.com/2023/09/14/long-covid-me-cfs-myalgic-encephalomyelitis-chronic-fatigue

 

https://twitter.com/user/status/1701606428409258164


Karl Lauterbach a German government member is talking about Long Covid. Seems to really have a handle on the problems people with LC are facing. Also mentions ME/CFS I think, but not sure anymore. He talks quickly and for 7 minutes so I'm having trouble processing it all. He says he put LC on the agenda of the G7 and is pushing to make it easier to repurpose medicine for LC in Germany I think. He also implores that more funding is needed. Gives Scheibenbogen a mention too.

There's a lot more in there, but I'd have to watch it several times over to be able to put it to text.

 

The clinical model is a lot of wishful thinking and lack of attention to detail from doctors. If patients can't get solutions from seeing a bunch of specialists separately, how is it gonna be any different if you get those people together in a clinic and get them to do "clinical stuff". It's not like doctors can talk to one another and develop new synergistic therapies (especially when there are none), that's not how medicine works at all. And even if they could, they don't have to be in the same building to do that. If two doctors saw the same patient they have all the data they need to talk and come up with something new. But it literally never happens, regardless of where they are located.

It seems like a magic ritual rather anything grounded in logical thinking.

 

Long Covid is a new name for an old syndrome

https://www.statnews.com/2023/09/14/long-covid-me-cfs-myalgic-encephalomyelitis-chronic-fatigue/

I get the feeling that this is promoting a bps approach; ie rehab rather than finding a cure (?)

 

I've seen several comments and he seems to be raising the overlap quite extensively. Lots of praise for how clear his message is. He has limited ability to do things, ministers aren't all-powerful in parliamentary democracies, but his messaging has been rising along with the reality of just how extensive the problem is.

For sure he is facing a lot of pushback behind the scenes, especially from MDs. He has not achieved much yet, but judging from how stubborn he is in pursuing it, in how insistent he is in his messaging, I doubt that it's for lack of trying. For sure he is the politician who has done the most so far. Which is kind of sad, but also inspiring in that he is not letting it go.

 

Hmm. I'm seeing a few incorrect details here, including of course that not all LC is ME:

When speaking of "the US government", it means the executive branch, of which the office of the president is independently in charge. Congress is not "the US government", it is the legislature, and the US Congress is unique in allowing for large individual proposals that can amount to over $1B in funding.

This doesn't happen in any other country, where the government is elected by the legislature through a parliamentary system and the whole budget is written by the government, rather than simply proposed. This funding was the work of activists, the US government was actually very confused as to what to do with it. As were the NIH.

It doesn't mean much to speak of decades of research into ME/CFS either. Any adequate effort done today could basically produce just as much in a single year. With the right resources and motivations. It's more about decades of lost opportunities. They sure tell us what not to do, however. And who not to listen to.

And this is just wrong:

It was created precisely because the very idea of post-viral syndromes is disputed, believed to be trivial and time-limited. It wasn't so much a lack of etiology, as a full dispute of it. It was motivated by explicit denial, not lack of evidence.

Nothing major, though. It works quite well as an overview of the issue.

 

Saw this on the LC subreddit and the creator wanted it shared. Not that much patient-created content out there so here is:

 

Today in the Washington Post: Opinion | The Checkup With Dr. Wen: Three lessons for people struggling with prolonged recovery archived here.

 

Sorry. In US usage, the US government is not just the executive branch. Congress is also part of the US government. The judiciary is not. But otherwise "government" here is a broad term. Every member of Congress is a "government" official. Any official at an executive branch agency is also a "government" official. I made a mistake once when I referred to Carol Monaghan as a "government official"--she was definitely not in UK terms but she would be in US terms. ADDED: I'm not actually sure what I wrote above is fully correct. That's how I'd use the words. But maybe I use them wrong. It wouldn't be the first time.

 

https://twitter.com/user/status/1702455892321640945



It’s official — Leana Wen has #LongCovid

“In July, I wrote about the unsettling experience of being.. very ill & hospitalized. Many readers have kindly written to ask whether I’ve fully recovered.”

“I wish I could say yes — The truth is far from that.”

link to article


https://wapo.st/3sW4IpP

 

Dr. Leana Wen who was a regular commentator on CNN compared wearing masks to every day risks, such as falls, car accidents or drowning started easing her precautions on wearing masks last year when she decided not to put her children's childhood 'on hold' in an effort to eliminate all risks. She received a lot of flack on Twitter from her opinions.

Yesterday she wrote an op-ed in the Washington Post sharing her experience with her own months-long recovery from pneumonia.

Does she have LC?

“The checkup with Dr.Wen: Three lessons for people struggling with prolonged recovery:​

This week, I wrote about the need to focus resources on treating and preventing long covid. I can relate to the frustration and desperation of people suffering from long-term conditions, as I’ve been managing my own months-long recovery from pneumonia.​

In July, I wrote about the unsettling experience of being on the other side of the stethoscope when I suddenly fell very ill and was hospitalized. Many readers have kindly written to ask whether I’ve fully recovered.​

I wish I could say yes — that as soon as the antibiotics kicked in, I was back to everything I was doing before. The truth is far from that.​

The first week was rough, as expected. I was so tired, I could barely get out of bed. I gasped for breath after walking 10 steps to the bathroom. Thankfully, the fatigue lessened, and I was able to resume work.”​

https://www.washingtonpost.com/opinions/2023/09/14/pneumonia-recovery-hospitalization-asthma/

 

thats actually really good. I'd like to print it out could you link to the source please @rvallee ? I worry about my loved ones they are so blase about covid now, i'd like to show them this, as it actually explains ME pretty well too

 

Sure thing. It came from this Reddit thread.

 

Darren Morgan, the Director of Economic Statistics at the ONS, said that the increase was largely in the category that includes post-viral fatigue, "so perhaps Long Covid is having an impact."
in
Leading UK Doctors and Charities “Livid” as Covid 19 Inquiry Excludes Long Covid Representation in Latest Module
https://www.sciencetimes.com/articl...ong-covid-representation-in-latest-module.htm