17 Comments
Sep 12, 2023Liked by Eric Topol

I have followed Ground Truths for a while as an unpaid subscriber. This post about Long COVID caused me to be a paid subscriber. Eric Topol truly follows the cartoon on his About page that is titled "Science Versus Everything Else". The cartoon graphically illustrates how people want to follow the "Simple" answers even if they are wrong.

Thanks Eric for providing the scientific illumination when all of the exact answers are not yet known even when that is not the easy or popular path to follow. I am pretty sure you are one of those little characters following the "Complex But Right" side of the cartoon.

Thanks.

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Very appreciative of your kind note, Mark, and your support of this newsletter!

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Sep 12, 2023Liked by Eric Topol

Same here Mark. This made me upgrade.

I only hope that he doesn't let Peter Attia off the hook regarding the importance of avoiding COVID. In addition, I hope he surfaces more of the science behind SARS. There was a lot written after SARS 1 that is eerily relevant today even though nobody talks about it.

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Sep 12, 2023Liked by Eric Topol

Thanks to Eric Topol for being a beacon of light in a world that is largely uninformed, misinformed, ignores data, is ideologically biased or frankly delusional. Even when faced with the data, it’s tough for most people to face the truth and alter their behaviour and attitudes, which is the critical step. Your rigorous scientific and humanistic approach is greatly appreciated and so important. I wish that all physicians and more lay people had access and were influenced by your work. I find that even many if not most physicians are unaware of many of the important findings that you have highlighted. Please keep up the amazing job in your illustrious “3rd career” and keep spreading the news!

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Deeply appreciated, Harold

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Sep 11, 2023Liked by Eric Topol

Great discussion with Ziyad Al-Aly! My question for Ziyad and Eric is: what is holding back progress on an affordable biomarker (or panel of biomarkers) that could be used to diagnosis LC in the outpatient setting? I believe we need a biomarker (beyond just psychometrics or symptoms) in order to put to rest the toxic, despicable claims that LC is not real. Also, it will help in improving the precision of defining cohorts in testing clinical therapeutics. I thought Resia Pretorius' microclot assay was going to be the one, but heard nothing in recent months.

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You're absolutely right, Dana. We desperately need a biomarker. Th problem is that there isn't yet one that is practical and validated. Hopefully that will change soon, but we're still a ways off. The FDA Commissioner made this point with the Patient-Led Collaborative group in their Long Covid meeting earlier today.

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Sep 12, 2023·edited Sep 12, 2023Liked by Eric Topol

I also just became a subscriber, after following Dr. Topol for years on Twitter/X. I am so thankful to you Dr. Topol for all you have done for medical research. I am also so grateful to you and Dr. Al-Aly for studying and educating the public about long Covid. There are many forgotten souls who are so very ill with other chronic illnesses with similar symptoms to long Covid who have struggled for medical attention and care. It took 17 years and support from physicians at Scripps, UCSD, UCLA, Stanford and the Mayo Clinic/Rochester for my daughter to finally get the medical interventions to help her have some quality of life. And SO much rejection along the way, I don't think that I will ever recover from associated PTSD from watching my child suffer and being told time and time again that her debilitating symptoms were psychosomatic. We fortunately had the resources and ability to persevere for care that many do not have. But it cost me my legal career so that I could care for her and get involved in patient driven advocacy and research.

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So very sorry that you and your daughter have gone through this torture and anguish, all the disrespect that is egregious on top of her suffering from Long Covid. I sure hope she continues to improve. Sacrificing your career says a lot about the kind of phenomenal parent you are.

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Sep 12, 2023Liked by Eric Topol

Great interview! I thought he made great points about RECOVER needing to focus more on interventions. That notion of reallocating the existing funds is a very viable option. The big award to NYU for example has over $300 million on it that could be pulled back. Here's the data from USA Spending: https://www.usaspending.gov/award/ASST_NON_OT2HL161847_7529

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Agree 100%. And he was being kind and diplomatic.

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Sep 12, 2023Liked by Eric Topol

Fascinating conversation! Before the pandemic I had zero interest in medical science. I now consider myself an arm chair Covid “scientist” thanks to you Dr. Topol. After 3.5 years of following all precautions I just got my first case of Covid 2 weeks ago when I was in Milan. I asked about Paxlovid immediately and was told it is only available in hospitals and you cannot get a prescription for it. I was shocked. I tested positive for 12 days and flew back home to Los Angeles the day after I tested negative 2 days ago. I still have tightness in my chest and a terrible cough. I have had 5 vaccines ( female age 56) and was eagerly awaiting approval of the new monovalent vax and now I can’t get it for months.

I have always been most concerned with Long Covid personally and the effects it will have on our already terrible US healthcare system. Because of Long Covid deniers, Insurance companies are going to give ppl a hard time getting approval for treatment/medications in the future. Dr. Topol you inspired me to get a certificate in patent advocacy at UCLA this fall. I am going to devote myself to helping people navigate the crappy US healthcare system. You are so inspirational and I thank you for your dedication to helping people understand the science.

One last thing... with all the new variants coming, shouldn’t we be able to know as consumers which variant of Covid we have/had. I’m wondering if I got a case with the new variant. Will we ever have that tool available?

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Thanks so much for your note, Angela. I'm sorry that you were unable to get Paxlovid in Italy.

I wish that the variant could be determined when Covid strikes a person, but that looks to be a ways off to get sequencing more routinely available. It actually would have made a difference when monoclonal antibodies were effective, and some patients were getting the wrong treatment because of the lack of such data.

So delighted to learn of your patient advocacy mission!

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Thank you for sharing this story! Patient advocacy is very important! thank you for all your effort on this front.

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Sep 12, 2023Liked by Eric Topol

Thanks Eric. You are my go-to even though you panned Omicron at the beginning and think BA2.86 may not be so bad.

I would love to hear more about why you think self-driving (via AI) is impossible. I am driving the streets of Kobe and making eye contact with hundreds of pedestrians a day, so I'm guessing it's somewhere there. Still, the pace of AI is so fast.

I follow Howard Luks who got COVID and has had a tough time getting back to his running regimen. I have avoided COVID because I love running and I don't want to lose that. Still, it's very hard given how much the masks have come off.

Nice job asking Ziyad about getting COVID too but how did he qualify for Paxlovid? What other protease inhibitors can us plain folk get?

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Thank you, Patrick.

I think Ziyad and anyone who wants it should be eligible for Paxlovid. o other protease inhibitor works well yet.

As far as Level 5 autonomous driving, most experts are certain this will never be possible due to extremes in weather and road conditions

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Keep up the great work! Spread it to media. Unfortunately, the gaslighting, misinformation and delusions about the current state and sequelae continue......

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