USA: Yale Long Covid clinic - Professor Lisa Sanders

Hutan

Hutan

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There's just been an interview of Professor Lisa Sanders, of Diagnosis fame, who is now running the Yale Long Covid Clinic.

Sunday 17 September Radio New Zealand - If I remember, I'll add a better link when it is up.
https://www.rnz.co.nz/national/prog...-for-many-people-it-s-been-a-terrible-journey


I had some concerns before the interview, as the Diagnosis programme sometimes made inferences of psychosomaticism when the patient couldn't be diagnosed with something else, or didn't respond to their treatments.

However, Sanders came across well. There is the usual playing around with unevidenced treatments, but then someone with Long Covid making the effort to get to Yale doesn't just want to be told, 'yep, you have Long Covid. Sorry, there's nothing we can do for you.'. So, it's understandable.

I really liked the dismissal of psychosomaticism, and the clarity about how many hypotheses are in play. I liked the answer to a question about tests not showing anything, Sanders said something like, 'tests are like questions. If you don't ask the right questions, you don't get the answer.' . She mentioned the game of 20 Questions, and how it's possible to ask questions that get 20 'no' responses, and how frustrating that is.

There was a number of mentions of ME/CFS, and she specifically said that the correct term for chronic fatigue syndrome is ME/CFS, which was nice.

I don't think Sanders' knowledge of Long Covid/ ME/CFS is better than many of the members here, and, in some aspects might be worse. But, she is clearly smart and clearly seems to have made an effort to educate herself.

Would I beat a path to the door of the Yale Long covid clinic? No. Knowledge of treatments such as compression stockings and salt to increase blood volume can be picked up online and implemented without a doctor. Stellate ganglion block doesn't excite me as a treatment I would want to try.

But, if someone needed a diagnosis for insurance and they lived in the US, I think people could do worse than go to this clinic. And I expect there will be potential to take part in research trials.
 
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I'm just looking at what is included in the transcript, so maybe not well contextualised.

"One of the things that I have definitely seen in these patients, not 100 percent but a lot, is that they're very deconditioned and some of that is that when they had Covid, they were down and out for weeks or months and haven't really felt like they should push themselves because they are worried because they are so tired, or it makes them feel bad, or they have chronic fatigue syndrome.
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That's not great.

But Sanders was clear in her opinion that despite women being more prone to Long Covid than men, enough men experienced it for it to be considered a very real thing.

"I can assure you that if it was just women who had it, we would not be having this conversation."
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Does that follow? Probably the same sex ratio occurs in LC as ME. And we haven't previously been having the conversation about ME. The difference now is the shear numbers (female and male) over a compressed timeframe. I suspect even if it were only women being affected by LC we would still be having the conversation.
 
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I thought when I read the article that it didn't accurately represent the interview. But there was the odd questionable bit and some inconsistencies in the interview answers.
 
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I actually just listened to Lisa Sanders's book Every Patient is a Story a couple of weeks ago. For the most part it was a very interesting look at how clinicians diagnose conditions. It was a sort of behind the scenes look at how providers are trained to think, though in some ways the book was also targeting providers by reminding them of what is necessary to correctly diagnose patients such as a proper physical exam. That said, I couldn't help but feel a pang of jealousy that she or the other clinicians mentioned actually seemed to have the time to spend and/or interest in working through diagnosing challenging cases.

There was a whole chapter on Chronic Lyme, which she is skeptical of as a clinical entity, but she also was clear that patients are seriously ill and we don't understand why. I did wince, however, when she went down the "militant Lyme patients who send death threats" road. Yet she didn't dwell on it and didn't use it to dismiss the suffering of patients (though was very dismissive of ILADS). Moreover, the patient in question in that chapter, after being dx with Chronic Lyme and treated with antibiotics for a couple of years that just made her sicker, turned out to have polymyalgia rheumatica. So mostly Sanders's concern was that a Chronic Lyme diagnosis could be used to distract from an underlying treatable condition.

After listening to that book, I'd certainly go see her if I could.
 
oldtimer said:
Why do you say this? I'm asking because it's been suggested in the past by my GP as a possible treatment for my 24/7 headache.
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Because stellate ganglion block has been around all my medical life as a magic treatment for anything puzzling that there is no other treatment for and as far as I know there has never been good evidence for it being any use in anything.

Another words it has been the paradigm placebo injection used by physicians suffering from furor therapeuticus or a desire to empty wallets. In 1980 I might have taken it seriously. It may possibly be useful for some niche problem or other but I never heard of any good quality trials.
 
Jonathan Edwards said:
Because stellate ganglion block has been around all my medical life as a magic treatment for anything puzzling that there is no other treatment for and as far as I know there has never been good evidence for it being any use in anything.

Another words it has been the paradigm placebo injection used by physicians suffering from furor therapeuticus or a desire to empty wallets. In 1980 I might have taken it seriously. It may possibly be useful for some niche problem or other but I never heard of any good quality trials.
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Thank you:)
 
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