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Forgive me the short political rant, but ONLY IN AMERICA ... do we have to rely on GoFundMe and Patreon to get through medical crises.... (rant over).

As to an earlier comment about masking - to me, it is such a non-hassle, that if I am going to be indoors and among people whose health status I don't know (ranging from the local supermarket to airports), I put on my N95. At least for me, there is no "cost" (other than the mask itself) and a ton of potential benefit.

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Yep. That’s what we get for letting medicine become big business. Admins of hospital systems, insurance, and pharmaceutical companies making into the billions while GoFundMe becomes another unintentional safety net. We have the worst outcomes among wealthy countries. We have the worst CFR for COVID in that same group of nations. Highest maternal fetal death rate. Physician are not the greatest at organizing given our strong sense of individualism, though we are starting to, so we can’t take back control of medicine for our patients. Couple that with people’s freedumbs and clunky pandemic management, our already strained healthcare system is on its knees while the penny counters skip all the way to the bank.

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Agree - but having been on the admin side of medicine, both on the delivery and health plan sides, one of the sad things I've seen is that many of the physicians that get into the business side of things are just as rapacious as any Ivy League MBA. Too many worship the Golden Calf of profits and stock options. :-(

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Absolutely

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Good for you. Thanks. I do the same. No reason not to.

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"Forgive me the short political rant..." I'm a fellow JD and an easy forgiver. Besides, I agree with you.

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Mar 14, 2023Liked by Katelyn Jetelina

I’d like to emphasize how hard it is getting to get an accurate test. I just received a bill from my primary care provider for a PCR test ( after a direct exposure): $360 per test, after Medicare and insurance kicked in their shares. This means most people will use rapid antigen tests,

and many will not know they are positive until it is too late to take Metformin. So you are right, metformin is unlikely to work in the USA, except for rich people. Medicare for All, now, could at least help get tests and drugs to everyone.

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That is so terrible, I’m sorry. Insurance companies never want to pay their share and the cost of healthcare in this country only goes up.

PCR tests performs poorly in real world use for COVID from the beginning through now (only getting worse over time) It’s also surprising how little data we have in regards to how well many of our PCR and antigen tests work in the real world for other infectious pathogens, adding to your excellent point that many people don’t know they have COVID, and certainly not in time to take metformin. There is data showing that metformin may help treat long covid. Fingers crossed.

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Omg ;(

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That gets back to "make a plan with your provider."

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I am a one trick pony when it comes to long Covid having lived with it for almost 3 years now. I think an example or two is worth mentioning here. I was diagnosed in early April 2020. Yesterday morning, I had heart issues (accidental VPB for the cardiologists out there) in the afternoon. I take 4 flecainides daily. No one in two generations in my family have had heart issues and I never had them until 2020. This morning I had difficulty adding 523 to 1,500 in my head and I'm pretty good with mathematics! So brain fog isn't a myth. There's more, but long Covid is by turns stubborn and protean and an almost daily companion for some of us. I think in 3 years most of my own symptoms have disappeared or lessened, but the ones remaining are doozies. Avoid it at all costs.

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Just an update on yesterday's post. No one knows when my first arrythmia appeared since I never even considered my heart to be an issue and I was battling so many other symptoms in the spring of 2020. But by summer of that year

I was having various heart tests run: Holter monitors, ziopatches, and finally medicomps. I learned that the early symptoms often involved a generalized "sick feeling" that I had trouble explaining to my wife. So cardiac issues started in 2020 and they're still going on in spring 2023. Now the reason for this update is this: this morning, I was lying on my side and abruptly a strong pain was present under my sternum. I croaked to my wife to please bring the EKG and the thing went crazy: bpms from 34 to 185 in a minutes span. It settled down after three minutes or so, but it was completely out of the blue, not at all exertionally related. Just suddenly my heart decided to go nuts this Wednesday morning.

That's the reality of living with long Covid. You might not collect heart trouble as a persisting disability, but why roll the dice?

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founding

Katelyn - thank you for doing a post on Long Covid, even a quick one is so appreciated. There is so much we still do not know. My son, 17, developed Long Covid in March 2022. His symptoms have continually worsened to the point where he can no longer attend school in person. We live in Boston, he is seen at the Long Covid/PASCC Clinic at Boston Children's Hospital. It is a world class hospital and every specialist we have seen has taken the time to really dive deep in to his symptoms, history and try things to improve his health. As amazing as they are there is no "cure" and due to the overwhelming number of children being seen at BCH we can wait months for appointments.

Everyone has a different risk calculus but if you or a loved one develop Long Covid the cost is steep, physically, emotionally and financially.

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Amy I am so sorry your son is suffering. I so hope he improves soon.

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Amy, I join with c.t.b. in wishing you and your son the best. Be prepared to be happily surprised by good outcomes!

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I'd like to know what treatments have been tried by the doctors who have seen for your son. Have you tried anything? Have they suggested anything? If not, you may want to look for help elsewhere. Not every treatment is going to work for every patient.

What's happening now with long COIVD seems to be what happened in 2020. Public health said back then nothing would help you if you got COVID, since nothing has been proven to work. I did not have COVID but I was in a hospital for another reason and asked a doctor about this. He said the same thing. It's better to do nothing than try anything. Now we know early treatment works. I wonder if you son got any early treatment when he first got COVID.

In 2020 innovative doctors found treatments that they said did work, and patients found them out. Maybe not all treatments worked, but it was better than doing nothing, especially when the treatments were safe.

When long COVID became know, the first conventional treatments for it were nothing more they physical therapy. What are the conventional treatments in use now for Long COVID? I'd like to find out. Meanwhile the innovative doctors are treating long COVID with a variety of things.

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Thank you so much for this, Dr Jetelina! This is the clearest information I’ve seen in a long time. I don’t understand why the government isn’t discussing this topic in a way designed to help people make decisions, even if we must operate from imperfect data. The silence on the issue is communicating a message they probably don’t intend — that those currently with long Covid are being left behind, and anyone who gets it moving forward can expect the same. If you have influence on the people working on messaging, could you let them know it’s not landing well?

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Mar 14, 2023Liked by Katelyn Jetelina

FYI - Diana’s youtube account name is Physics Girl (and has many really interesting videos!). Her struggle with long covid is awful.

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author

Yes, big mistake on my end :( I edited the post

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You are right! It is hard to know which patients are vulnerable. We'll still be masking around EVERY patient on my floor because we're an oncology/autoimmune infusion center. We are very protective of our patients. Also, all staff throughout the entire health system are required to wear masks around any patient that requests it.

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Re getting metformin in any sort of timely manner, it doesn't help those who don't already have a relationship with a provider, but for those who do, I'll point to what Daniel Griffin has been saying in clinical updates - "Pre-exposure period : Make a Plan.". He's generally referring to planning ahead for whether or not ones conditions and drugs play nicely with paxlovid and if not how to modify or what the next choice is (Remdesivir is infused), but it sounds like a discussion re metformin should now be included.

Metformin is cheap enough I wonder whether keeping 2 weeks on hand could become a thing.

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yes, and granted, testing situation gets wiggy. But otherwise it's a matter of discussing with provider ahead of time. There's much risk in 2 weeks metformin.

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This is good information and I appreciate it.

In addition to/aside from Paxlovid and metformin, though, what I am most curious about is how preventive vaccines (particularly the bivalent) are for long covid. What's tricky about the time frame re: metformin is that it sounds like many covid infections don't appear on rapid tests until several days after symptoms begin, at which point it could be too late to get benefit from metformin.

I realize there's not likely much data on this for the bivalent booster because it's only been around since September, but I am wondering whether there's information about whether the likelihood of long covid is reduced for people who've been vaccinated with the bivalent booster.

Thank you!

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author

I haven't seen anything on the bivalent booster yet. But I would assume it's the same as the monovalent... it decreases the risk of infection so it decreases risk of long COVID. I'm keeping my eyes peeled and if anything comes up I'll be sure to update.

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Thank you! I know you're always on top of what's newsworthy. I appreciate it.

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Is the UK study saying that 4% of all adults with a Covid infection reported some type of long Covid symptom? Other estimates seem to be much higher, up to 20% or 30%. It is hard to evaluate risk when the numbers are so different. (Ex, this often cited stat that 1 in 5 US adults experienced long Covid https://www.cdc.gov/mmwr/volumes/71/wr/mm7121e1.htm)

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author

Ah this is a great question. The UK study is overall prevalence in the population. So if we were to ask random people on the street, 4% would have long COVID. This is different than 10% that is usually reported (like the metformin one among the placebo group) because this was among those that had a confirmed infection.

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Ah, thanks. How does that translate to risk from infection? I'd thought of 4% as the "fsck up your life for months to forever" number, and tend to comment that I'd like to limit how many times I roll that d20. (Well, ok a 1 on a d20 is 5%)

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Thanks, that makes sense! There are soooo many numbers out there!

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Mar 15, 2023·edited Mar 15, 2023

20 to 30 percent always seemed crazy. Most people I know know no one with lifelong Covid that disrupts their life.. I don’t. My friends don’t. My 100 work colleagues don’t. ( We took a survey) In discussions with groups at my daughter’s hospital, it was maybe 1 person out of 25 knew someone with it. While these are purely anecdotal, If it was 30 percent, the chances of this would be very small. Most of us would know many people with it. The 1.6 percent shown in this study for activity limiting long Covid just makes more sense. That still A LOT of people. But the 30 percent which was tossed out there always seemed like it could not possibly be true.

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Well, what Katelyn explained in the comments it that the 4% of people (in a snapshot in time) would have COVID and that 10-30% (closer to 10%) of people with COVID would develop it. I personally know three people with Long Covid and follow disability activists who share their experience. If you "know" anyone on the linked list below, then you've known someone with long COVID. I personally also know a 22 year old who had a mini-stroke post COVID (I volunteer with him and he's decided to study medicine as a result of his experience). A relative of mine died of a stroke at 72. Could have been bad luck, could have been a post-COVID stroke. And 33 year old friend who went to the ER after a cardiac incident (she thought she was having a heart attack, she's had panic attacks before and she said this was different). They told her it it's likely related to her recent (mild) COVID experience and she's been wearing a heart monitor for the past month. I'm not trying to confused Long COVID with post-COVID incidents, but what I'm saying is the risks might be small, but they are very real and if you know enough people who feel safe sharing this stuff with you, then I'm not sure how people don't know someone affected by these things. Here's the list of famous people who have shared their own Long COVID experiences: https://me-pedia.org/wiki/List_of_famous_people_with_long_COVID

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Remember, the 30% is including things like my various friends who needed a nap everyday and never did before, or Tim Kaine who has described his symptoms as 'like every nerve in my body has had five cups of coffee' but it's weird as opposed to screwing up his life in a meaningful way. Or someone who has tinnitus or someone who might otherwise think I guess I'm getting old. Or someone who's a little more forgetful. There's a lot of things that might be something new since covid that people might not happen to mention to their friends either because it's not hugely disruptive just annoying or because they don't connect that it had anything to do with covid.

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Our HR clients employee surveys ( which are anonymous and which incentivize reporting with the promise of better benefits when needed) just aren’t baring out anything like the 30 percent either. 1 percent about. Which is in line with these numbers given that they are surveying only working adults (not the elderly or those who weren’t working before). And we have not had any clients report any significant upswing in disability or quitting based on pandemic caused problems. 2 percent of the population who has had Covid is like 1.5 million. plus people. It’s lots of people. 30 percent to me is just on its face not credible based on lived experience .

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Thanks for asking this question, it is a good one! Understanding how to interpret these numbers is challenging, especially when the media re-report scientific studies with little context or explanations

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I am an 86 year old female in relatively good health. I have not had covid and I am very cautious because long covid scares me. I don't want to spend my remaining years in a brain fog or chronic pain. If I get covid, should I take metformin rather than paxlovid? I value your opinion but of course I will also check with my doctor. I am so glad I found you! Your information is always helpful and valuable. I hope you will respond. Thank you.

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You should definitely check with your provider. But there are no medication contradictions with Paxlovid and Metformin.

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So far as I understand it, there's no need to choose.

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What if anything is known the effects of metformin on people who are already taking metformin for diabetes before getting covid? Covid less severe? Less Long-covid? Any info? So many of us with diabetes controlled with oral agents these days, some of us must be in some data set or other!

lucy candib

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These are important concerns. Masking on our floor includes hallways, bathrooms, and any area where patients go. Our building is only a year old, but I don't know specifics about air exchange rates and those types of things. But I do know they matter. Michael Osterholm uses cigarette smoke to help people understand how easily airborne viruses can spread. And most people, especially those over 40, can relate to that analogy.

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This is very interesting news. I have been on Metformin for a few years for type 2 diabetes. Here's what's really interesting: my husband and I both had Covid in Dec, 2020. In the spring of 2021 we both got the Pfizer shots. In the fall of 2021, we got boosters with Moderna, then in May 2022 we both got another booster of Moderna. In late June 2022 we were both exposed to Covid while traveling in Europe, both tested positive. He had very mild cold/sore throat symptoms with a fever. I had no symptoms at all. I wonder if the Metformin had anything to do with my milder case!

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For those who have not seen Dianna Cowern/Physics Girl's excellent videos, her You Tube channel is excellent, as is the whacky inventions (NOT its name) You Tube channel of Simone Giertz who created the video in this column. (Using Physics Babe is unlikely to find Physics Girl for those who want to see her work and witness how extremely healthy she was prior to getting Long COVID.)

Thank you for the good news that a study is now seeing a reduction in cases of Long COVID after previous illness. Is this a true change from what some previous studies had suggested, or are different timings involved, different definitions of Long COVID involved, or differences with different variants of COVID possible?

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