> Is the blood pressure really being measured "correctly" in all those studies? Or not?
Probably incorrect in most studies, especially large population ones that influence treatment guidelines.
It’s academic and doesn’t practically matter though.
The pathogenesis of hypertension related disorders (kidney failure, heart failure, stroke etc) is well known.
It’s not in doubt that sustained hypertension is bad, that there is increased risk with higher blood pressure and that patients with high blood pressure undergoing treatment suffer less of these bad outcomes.
Potential harm is always the same - misdiagnosis and/or mismanagement.
It’s probably very low in the context of CGM and diabetes as the potentially harmful treatments require prescriptions.
Device prescription requirements are usually due to product labelling and the manufacturers application. There are OTC fingerstick glucometers and CGMs approved.
Novo Nordisk is running their lines at max capacity and cutting production of some other drugs. I think the last number I saw was new weekly prescriptions are up 3x from Dec 2023.
Unlike Eli Lilly (who use chemical synthesis for Zepbound) they use yeast for synthesis and have decided not to contract out production to protect manufacturing trade secrets which makes ramping up slower, have to wait for their Denmark plant upgrade to come online.
> I think a large number of those with undiagnosed conditions actually exhibit conditions from the hEDS bucket of comorbidities which is especially vast and varied. See https://ohtwist.com/about-eds/comorbidities for an incomplete list. This bucket does include SIBO. So if you have been told by a doctor that you're a hypochondriac and you exhibit SIBO these do increase the probability of you having hEDS.
Not really. SIBO prevalence increases with age and goes up to 80% in elderly patients.
hEDS prevalence is between 0.005% and 0.02%.
The symptoms/diseases you listed are very common. We don’t really use hypochondriac anymore but the reason these are common is because they’re vague constitutional symptoms that have 1000 different possible causes or nothing at all.
> What is very unorthodox about about my view is that this flexibility is not an essential component so a lack of flexibility is not sufficient to rule it out even if it does reduce the likelihood.
There is nothing unorthodox about this, it’s part of the 2017 international criteria for hEDS.
Well if the actual hEDS prevalence is a lot higher than that then it would upset a lot of your other numbers.
The presumed prevalence of hEDS used to be 1/50K, then 1/15K, then 1/5K (you are here) and now more recent research has it 1/500 (post 2019). So I don’t take much stock in presumed prevalence given the history of it. What are the odds that they got it wrong all those other times yet completely right this time.
The problem with first presuming this prevalence and then designing diagnostics around it is that of course the measured prevalence using these diagnostics will match the prior assumptions.
I’m of the view that it’s ~1/50 (2%) depending on ethnicity and that >90% of these are rather mild and very difficult to detect yet still show up as comorbidities. I currently don’t have the evidence I would like for this theory, I do have enough for my own beliefs. Until I get my hands on enough relevant WGSs I will not have definitive proof.
I’m not sure what you mean by designing diagnostics around an assumed prevalence. The 2017 criteria is pretty broad and I’m not sure how this was influence by assumed prevalence.
Is there a reason you suspect a connective tissue disorder to be the unifying diagnosis? I have not heard this theory before.
Only ~15% of people with a pre-2017 diagnosis of hEDS met the newer 2017 diagnostic criteria so the new criteria was a strengthening of thresholds. It's assumed within the patient community is that this was done to ensure that hEDS remained a rare disease. The rare disease classification is required for many NIH grants. The NIH rare disease threshold is (60/100,000) and even a (1/500 or 200/100,000) would cause hEDS to lose this status. The 2017 criteria has been a source of controversy. There has been a fair amount of research since then, e.g. https://bmjopen.bmj.com/content/9/11/e031365. But if there is one thing I don't trust doctors with (or medical researchers with) it's statistics.
The main thing I focus on is the lack of the distinction between hEDS and HSD, there appears to only be a weak association to severity with everything else about it being entirely proportional to the severity. I.e. both conditions appear to be the same thing. There is just so much randomness between individual doctors, and even within the same doctor, that even the severity link is very weak. US doctors especially are reluctant to diagnose with hEDS because of the presumed rarity but also a diagnosis of hEDS can apparently screw up the clients insurance - and as there is no known treatment they don't see the point of doing that. So while it's generally accepted that hEDS is 1/5,000 and HSD is 1/600 I don't see a difference between hEDS and HSD so it all goes into the hEDS bucket. Especially when doctors are also bad at diagnosing the hEDS comorbidities and without those they generally assume they're seeing a presentation of benign hypermobility.
The other thing I focus on is the strong predisposition to Long Covid by those with hEDS/HSD. Dr. Jessica Eccles is doing great research here and if anyone in the medical community is going to find out what I have seen it will be her. Dr. Jessica Eccles has a psychiatry background and which helps her use the psychiatric comorbidities of hEDS to find associations that would not be clear if only using standard diagnostic criteria. Her claims are not as strong as mine but she does have to work within the medical community and can only push so hard, even still her claims are pretty strong and she does provide the evidence for them. She is getting published. I expect her claims to get stronger once she is able to collect more evidence. She is currently using Generalized Joint Hypermobility https://bmjpublichealth.bmj.com/content/2/1/e000478 but notes that the distinction between GJM, HSD, and hEDS is rather blurry and I think in time, when she has more evidence, she will start to challenge the standard diagnostic criteria more forcefully.
As for my own research, I did an unofficial study on the patients of a Long Covid clinic and found that 30% have hEDS/HSD which would be statically impossible if hEDS/HSD was at 1/500 and could only happen if the true incidence rate was closer to 1/50. It's reasonable to expect some sampling criteria basis in sampling from a clinic and not the general population but in testing for such bias I was only able to find a weak effect and nothing anywhere near close to the measured 10x.
So yes, I do believe that the hEDS connective tissue disorder is the unifying diagnosis responsible for huge number of undiagnosed conditions. Clearly not all but possibly the majority and at least the plurality. I think it's the most under diagnosed condition by absolute numbers and work should be focused on correcting that until it is at least the second most under diagnosed condition.
You’re missing that we have treatments with known risk/benefits vs research treatment X with undefined risk and reward.
It’s extremely challenging if not impossible to obtain informed consent in this situation.
We’ve been through this before where a fancy new treatment with promising early/lab results usurped conventional therapy only to later be found inferior.
Earlier TKIs and NSCLC are a recent example that comes to mind.
It's not undefined, though. That's the point I'm getting at. There is no binary of known and unknown. A tentative picture exists based on animal trials and expert judgment. That tentative picture informs an estimation of the risk to reward profile which is then the basis for an informed decision.
This is decision making under uncertainty. It's bad practice to say that uncertainty always means "don't do it".
Its absolutely ridiculous the level of arrogance to presume you can apply some debate-bro logic and talk your way out of NOT HAVING ANY DATA. NOT HAVING ANY DATA means your product fails. End of story, thanks for playing, nice try, go back to level one and try again. NOT HAVING ANY DATA means we deny you authorization to inject our babies with untested vaccines.
It’s similar in both countries with some slight variation in the US depending on the state.
Unless the prescription is marked as “do not substitute” pharmacists generally have the discretion to substitute for a generic, in fact a few states require it.
With that said, Viagra was initially developed for high blood pressure and chest pain. Testing didn’t pan out but it worked wonders for erections so it was rebranded. It is also used in pulmonary hypertension.
I think you’re conflating plastics with aesthetics/cosmo. Only a small minority of plastic surgeons practice primarily aesthetics.
Majority will have a micro, breast or hand practice and have a side hustle in aesthetics so the overall satisfaction stat you’re citing is not reflective.
There are different hassles in cosmetics like increased overhead, patient expectations (which are much higher in cosmetics) and advertising/patient recruitment. Call can be worse as the patient paying $50k for a rhinoplasty expects the surgeon to answer the phone for every whim.
> Sure, of course you would make practical decisions about what kinds of tests to administer, and not proactively administer the tests that have significant negative side effects.
The harm is from investigating the screening test result and not the test itself.
> If it became a common thing for cancers to be detected, but the detection could reliably say “this is likely low impact, we should just keep an eye on it but not treat it”, this would be a lot less scary
This is already the case for some like prostate cancer and certain lymphomas.
> Cancer diagnoses are partly so scary right now because we’re often mostly catching cancers that have progressed and are causing symptoms
The most aggressive cancers are also the least likely ones to be diagnosed by screening due to growth rates, screening intervals and diagnostic test limitations.
The harm can be from the initial screening too. The lifetime risk for complications from routine colonoscopy is around 1.6%. The lifetime risk of colo-rectal cancer is 4-5%.
So already before investigating the result, there's a very real consideration whether increasing the number of colonoscopies is likely to be a net benefit.
Colonoscopy is confusing because it is both screening and diagnostic/investigating.
Most if not all of the complication/risk (perforation and major bleeding being the ones of note) is from the polypectomy / biopsy part of the colonoscopy.
Probably incorrect in most studies, especially large population ones that influence treatment guidelines.
It’s academic and doesn’t practically matter though.
The pathogenesis of hypertension related disorders (kidney failure, heart failure, stroke etc) is well known.
It’s not in doubt that sustained hypertension is bad, that there is increased risk with higher blood pressure and that patients with high blood pressure undergoing treatment suffer less of these bad outcomes.