Long Covid in the media and social media 2023

Tonight this aired on PBS NewsHour in the United States. PBS continues to provide informative and sensible coverage on long Covid.

What the latest research tells us about long COVID’s most common symptoms

https://www.youtube.com/watch?v=tm23YXuw-bY

Transcript
John Yang: According to government data, more than 100 million people in the United States have had Covid. For most of us, it's meant a few miserable days. But for about 15% of those who have gotten the virus it's meant prolonged symptoms: What's come to be known as long Covid. More than 3 years into the pandemic, physicians and research are still struggling to understand a lot of things about the condition. Laura Synthanem, our News Hour health reporter, has written a lot about long Covid.

Laura, one thing they've had trouble with is defining it. Actually, what it is. There was a study in the Journal of the American Medical Association recently, that tries to take a step toward a definition.

Laura Santhanam: That's exactly right. So researchs at Mass General Brigham in Boston surveyed thousands of long Covid patients and basically asked them to tell them, "What are your symptoms?" What they found were really echoing a lot of what you hear from people who have been dealing with long Covid, right? They took 37 symptoms, whittled them down through infection history and statistical modeling into these 12 symptoms that they say form the hallmark of long Covid. Things like brain fog, brain fog, chronic cough. Also this thing called post-exertional malaise. So, say you get up to walk across the room or you read a recipe to make supper on night. It just wipes you out. Things that people used to [be able to] do without even thinking about, now they're just completely exhausted. And it just really points to how transformation this disease is, and we're just beginning to understand it. Researchers call this an attempt to create a common language on how to understand this disease.

Yang: Is there any correlation between long Covid and vaccination status?

Santhanam: According to this study, there is evidence that supports that. They took these different survey responses from different long Covid patients and broke them into four different clusters. Looking at types of symptoms and also severity. And people who tended to have the worst symptoms and outcomes and just sort of all of it were those who didn't have their full primary series, so two doses of Moderna or Pfizer (or what have you) and had also been infected with Covid multiples times. So that combination is really rough for people who then end up with long Covid.

Yang: Now, some Covid experts have reservations about this study. What are their concerns?

Santhanam: You know, one of the big concerns about this study is that we're still so early in this process. The researchers themselves, when I ask them, they say, "This is not a diagnostic tool." You don't take this study and then diagnose someone one way or another with long Covid. What it does do is forms a common langauge about how we can talk about this disease. Create clinical trials to then better understand, what are the treatments that we should be using for people who are sick with this? And then ultimately work towards creating diagnostic tests. Giving someone a test and then saying, do you have this or not? Another thing that researchers will also tell you (told me) is that they didn't use lab data to see if these people did in fact have long Covid. It's just self-reported survey data, which has its limitations in that respect. But, you know, another step in this process would be taking, do they have an immune response that suggests they have these sorts of disorders?

Yang: Now, you've talked to (for your reporting on this website) you've talked to a lot of people who are experiencing long Covid. What did they tell you about not only their experiences, their symptoms, but about getting about medical care?

Santhanam: Yeah, it's been such a struggle for so many people. And many of them have felt adrift in the healthcare system, many for as long--for years. One patients who I talked to said that if you are lucky enough to find a physician who will listen to you, that's going a long way. But so many times, they are just sort of rou--it's like a round-robin of medical care trying to find someone who will listen to them instead of just saying it's all in your head and then get the kind of care that they need. A lot of them describe their care as trial-and-error. Many of them go to Facebook groups. They describe the wait for post-Covid care centers as being 6 months or more. The waitlists certainly support those stories. And it's just really been a struggle for people, who again, so many of them struggle to just get up and walk across the room, much less, try and get transportation, childcare, their whole life in order so they can get an appointment that takes months in the making.

Yang: Earlier you mentioned looking for antibodies in some of these people. What else needs to be done, or what else is being done, to further understand this condition, and also, figure out the best ways to treat it?

Santhanam: That's a really great question. That's one of the things that this study supports. Looking at these 12 symptoms. How can we treat those symptoms and design clinical studies that are targeting those symptoms? And then see what happens when we do. Are there areas where we need to certainly do more research? Or looking at long Covid in pediatric patients? And looking this disease in pregnant people? And those are certainly part of this broader RECOVERY initiative from the National Institutes of Health which this study is also a part of. But there's certainly a long way to go and long Covid patients have been waiting a very long time to get there.

Yang: Laura Santhanam, thank you very much.

Santhanam: Thank you.

 

Don’t know if I love the headline here—does not mention MECFS but it is an opinion from the Washington Post which is good.

The mystery of long covid is getting closer to being unraveled

https://wapo.st/3NqQsx9

 

https://www.dw.com/en/post-covid-vaccination-syndrome-what-do-we-know/a-65898312


Post-COVID vaccination syndrome: What do we know?

Every vaccination, including the COVID-19 shot, can cause side effects like fatigue and muscle pain. But it is difficult to diagnose so-called post-vaccination syndrome. What do we know about vaccine damage?

 

I did not like that report. At all. Poorly researched. Entirely ignored ME. Presented the JAMA study findings exactly the wrong way ("those are the defining symptoms of LC"). Disappointing from Newshour, they generally do a lot better than this.

https://twitter.com/user/status/1668409831965749253

 

@ArturFedorowski "Microvascular Dysfunction and Reduced Cardiac Stress Reactivity in POTS Associated With Postacute COVID-19 | Circulation:Arrhythmia Electrophysiology"

"New data from Karolinska, SWE. PostCOVID POTS is not only about heart rate but also about small vessels"

 

https://twitter.com/user/status/1671444557051969537

(I haven't seen the program she's refering to)

@Adam pwme ?

 

Long COVID-19 can make you thirsty - a first look at the data showing us what scientists have learned

https://www.cleveland.com/news/2023...-showing-us-what-scientists-have-learned.html

 

Rather odd, I've never heard people saying that. Perhaps it's less talked about because it's not debilitating.

 

Same here, since having ME I feel more thirsty than previously, and have to 'go' much more often, and produce much more, than before. I wonder how many of us share the same phenomenon, and why that is?

 

Never drank very much during the day. Now drink about 3 liters of water. When I don't drink often enough I start to feel weak and sick.

 

I have talked about my pretty bad water retention elsewhere on the forum a couple of times. When I get very thirsty for no reason, I know it is a sign that I'm getting worse and it will soon just end up as huge water retention on my body. After I get really swollen, my body just wants no more drinks (or very little). Basically not much goes in but also almost nothing comes out, I'm a water balloon without any input or output. (And I'm worried a lot that eventually this might lead to kidney stones.)

When the water (or at least part of it) starts to disappear as I am getting better, then a lot of it flushes out in big big quantities. That is a sign I'm getting better.

So at least for me, something is definitely going on with this. (Also, I'm not even close to being diabetic, so that's not it. I also read about hypothyroidism can cause such water retention - that I have, only subclinical though - but I've only read about a smaller amount of water in those cases than what is going on with me. And also, an endocrinologist, a senior lecturer at Semmelweis University checked my water retention and I am pretty sure he would have told me this but he was pretty clueless too.)

 

Info here:

"When it came to the specific symptoms the participants experienced, both groups reported that fatigue, muscle and joint pain, infection and immune reaction, neurologic and gastrointestinal symptoms, and orthostatic intolerance all worsened. The long-COVID group, though, reported significantly more sleepiness, respiratory issues, depression and anxiety, irregular body temperature, and excessive thirst".

Although I feel very hot during PEM, my body temperature drops to 95 F first and second day during PEM. I've documented my symptoms for 2 weeks after PEM for my doctor's records years ago.

I also have excessive thirst during PEM, but drinking fluids doesn't make me feel replenished. I've tried electrolyte drinks and this does help a little.

 

It's the one with David Strain that wasn't so bad but was framed like this:

 

The body temperature thing feels so weird. When I'm in PEM, I'm constantly alternating between layers of clothes/blankets.

 

Oh I've seen a lot of that. Quite common, seems to be especially related to dysautonomia. I've had that for years but yeah it's probably almost never discussed because it's like item #20 on any list and it's barely possible to get through 5.

I haven't discussed most of my symptoms with a MD for that reason. That's probably the norm. In science it's really important to record everything, to not prejudge data. Can't do % without an accurate denominator. Medicine completely screwed us over refusing to properly record our issues. This is the only way to get good data.

It's well-known that we don't have good data, even deniers admit it. It was always a choice to not know this data. Taboos never lead to good outcomes when they are enforced by people in charge for the purpose of not knowing and therefore having no obligation to do anything.