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It took me several years to get a SIBO diagnosis even though the "breath test" fir it is cheap and easy. Similar symptoms and treatment to autobrewery syndrome, and a lot of the feedback I got from doctors prior to diagnosis was that I was either a hypochondriac or "just more sensitive to pain".

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I was told that I was a hypochondriac by a few doctors so I went away and studied what hypochondriacs typically complained about.

I found that there isn't as much variety in complaints as you would expect if people were independently making things up to complain about and there isn't as much consistency as you would expect if the complaints were due to social contagion.

There does seem to be spikes around general awareness like when a popular TikTok or famous person is diagnosed with a thing, but it's possible to use the less well known bucket of comorbidities to figure out what percentage of those are examples of social contagion, what percentage do present with these actual conditions, and what percentages are true hypochondriacs. The first group lack the depth of comorbidities that the second group have, and the true hypochondriacs tend to claim they have absolutely everything no matter how preposterous.

From what I found the large majority of those considered hypochondriacs do exhibit the conditions that they believe they have. The social contagion and true hypochondriacs appear to cooccur with mental disorders and are only a small percentage of the cases. I really wish medicine made an effort to distinguish between these three cases to extract the apparent hypochondriacs from the true hypochondriacs and treat them separately.

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. There is an assumption that hEDS requires the person to exhibit excess flexibility and while this does appear to be generally true it doesn't appear to be a necessary condition. A person with hEDS, especially if they are male, may not exhibit any excess flexibility but will exhibit hEDS comorbidities at the exactly same rate as someone who has been officially diagnosed with hEDS which would be rather unlikely if they didn't have also have hEDS. Of course if a person exhibits excess flexibility that would increase their likelihood of having hEDS. 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.

Thank you for the well considered response, but my symptoms include a tremendous amount of flatulence and diarrhea, a specific smell that other people can detect, etc. that cannot be explained by hypochondria.

I 100% believe that you are not a hypochondriac and did expect you to have corroborating evidence of such. I was writing in criticism your doctor’s initial assessment and of doctors in general.

I was also throwing information over a wall on the off chance that the information would be useful to a third party that may not yet know about hEDS and hEDS related comorbidities.

> 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.

https://www.ehlers-danlos.com/wp-content/uploads/2022/03/Mal...

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.

It took me nearly two decades of problems before I got a SIBO diagnosis, via breath testing. But now I'm not sure how much stock to put in such tests, given the very recent paper https://onlinelibrary.wiley.com/doi/10.1111/nmo.14817 which suggests positive breath test results may usually be an artifact of decreased transit time more than any small bowel overgrowth.

I definitely sympathize with you on doctors generally being unhelpful and uncurious.

It's ridiculous what doctors will put people through instead of doing a basic test that's cheap and easy to administer and (in the USA) should be covered by health insurance.

I know someone who went through a similar experience with H. pylori.

Tests are not 100% accurate, so running a test without a good reason can lead to a lot of unnecessary medical intervention. A false positive can lead to thousands of dollars of expense and not getting better.

In my particular case, I had numerous other more expensive and invasive tests before my gastro finally decided to even offer the breath test. The treatment is a course of antibiotics for a week.

This reasoning only makes sense in the context of a dysfunctional system. "We can't gather information because we will react in stupid ways".

Surely the correct response for noninvasive tests is to run the test, and raise the threshold for intervention?

Or if it's cheap, run the test twice. And you're presumably going to have other symptoms that corroborate the results. Maybe the symptoms of X are ambiguous alone, but what are the odds you have a positive test for X and matching symptoms but not X itself? Not zero, but lower.

Running most tests twice won't necessarily give you any useful additional information. Tests generally don't give binary results. Like a hydrogen breath test will give a value within a range, but a high value isn't necessarily definitive for diagnosis of SIBO. It's just one piece of evidence.

https://my.clevelandclinic.org/health/diagnostics/12360-hydr...

There are well-established frameworks in statistics and decision theory for handling this kind of situation, some of them in continuous successful use for over a century. It's not exactly a solved problem, but we aren't fumbling around in the dark either.

Those well-established frameworks in statistics and decision theory are unfortunately mostly irrelevant in complex medical cases like this. There is no reliable source of truth to index against. We often don't have a reliable scientific basis for taking the result of a particular quantitative test and calculating the probability that a patient has (or doesn't have) a particular condition. Estimates of selectivity and sensitivity for particular tests are often wildly off. And when there are multiple tests involved we often don't know the correlation coefficients. Even the definitions of particular conditions are often somewhat arbitrary and not particularly biologically relevant.

Software developers often have this unrealistic fantasy about how things ought to work in medicine and biology. They reality is far messier.

Fortunately I'm not a software developer!

Also yes, you're right about having good estimates for medical tests.

Mainly I take issue with your claim that "Running most tests twice won't necessarily give you any useful additional information." As long as it is directionally associated with the thing you're trying to test for (i.e. it has any medical value at all), then running it twice absolutely should give you additional information. "Not necessarily" I guess is true, but again, probability gives us the tools to reason about situations like this even if we can't estimate population parameters reliably.

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