[paulmd]

> The fact that patients consistently react in this way (or worse) I think is why we rarely discuss true causes of CFS nowadays in the medical industry.

Well, it’s a vicious circle isn’t it? A lot of issues are dismissed by the medical community (and I disagree with the characterization that “it’s somatic” isn’t dismissive in practice) for decades and decades and simply not studied, until the cause can be medicalized and then suddenly it was real the whole time.

It’s not just that “patients are being irrational and picking up the wrong message”, that’s actually the same message that the medical community itself projects. These aren’t real issues worthy of study unless a causal mechanism can be identified. And for a lot of issues that’s simply been a matter of time, despite decades of doctors insisting it’s all just in your head.

Fibromyalgia and cystic fibrosis are classic examples of this. People have real, objective pain and the response of the medical field for years and years was “no you don’t” or “it’s in your head, you’re just stressed, you need to relax and it’ll go away”.

Microbiome is probably another that the needle is starting to swing on.

But in general, medical practice suffers heavily from the problem that if you can’t identify a mechanism, and you can’t prescribe a pill or cut something out to make it go away, it’s not treated as real. Medicalization is real and has a highly negative outcome on the direction of research in the field. And that in turn produces this barrier where doctors just want to make “somatic” patients go away and patients perceive this and know doctors aren’t really taking the issues seriously. And that degrades their trust in doctors and the medical community and creates this barrier to patient outcomes. That is largely your fault and not the patients, and the answer isn’t just “better bedside manner/explain the situation better”, it’s to stop ignoring issues that have negative QOL effects until they can be medicalized and then turning it into a $50k/y drug the next year.

It’s really that flip from “your pain isn’t real” to “it’s so real you’re going to have to pay $50k a year to treat it” that really drives the wedge. And that’s something of a US-specific problem of course.

But when people are paying $300 out of pocket for a GP visit they actually expect their concerns to be taken seriously and not just “it’s all in your head”. And I recognize that’s not a great position for practitioners either but again, the price tag you have chosen to associate your care with produces this need for acfual tangible outcomes and not “just change your whole life and make a bunch more money and life a much lower-stress life”. That simply is not actionable to most people. Just like semaglutide has done more for obesity than decades of doctor tutting about diet.

And again, this piles on top of doctors themselves providing objectively sub-standard care for vulnerable populations due to inherent biases etc - women, obese, etc tend to have actual medical symptoms dismissed at highly elevated rates due to inherent biases in practitioners, so these “weird” diseases tend to get the double whammy of doctors who don’t believe in the disease and doctors who don’t believe in the patient.

My aunt’s uterine tumor wasn’t clinically recognized until it was the size of a volleyball and all her pains were dismissed because of weight and because she was a woman. Imagine she had fibromyalgia. What do you think that doctor-patient relationship looks like? And that’s really on doctors not patients. This is the problem with the “we can’t recognize it and won’t treat it” - a lot of times the problem is doctors won’t recognize it, and this extends to the system of diagnoses itself. If it can’t be medicalized it’s not real.

[whimsicalism]

> These aren’t real issues worthy of study unless a causal mechanism can be identified

There are plenty of people studying somatic causes of CFS, they just get death threats [0].

I think the focus should be on destigmatizing 'somatic' explanations. That we view somatic explanations as dismissive for real conditions is not a problem with the explanation because some real conditions are psychosomatic and that is a fact of life. It is a problem with the stigma we assign to it.

[0]: https://www.theguardian.com/society/2011/aug/21/chronic-fati...

[paulmd]

You know, the point of this post was that “medical science is pretty bad at recognizing real, non-somatic causes of these diseases when the cause is not obvious, and instead tends to handwave onto somatic causes, and people generally find this offensive especially when the cause is determined another few years later and they’re asked to pay $50k a year for something their doctor was sure wasn’t real two years ago”.

And yet you’ve somehow both completely missed this point, and deflected onto “but doctors get pushback and even personal threats when they try to double down on this even harder”. Yeah, don’t default to telling patients it’s all in their head, after a while it gets offensive, especially when a few years later you try and charge them $50k a year to treat a disease you told them wasn’t real.

“Somatic research” is fine on paper but in practice it’s usually an excuse to deflect from a disease that cannot be adequately explained in medicalized terms. Everyone knows “somatic” means “in your head” and that inherently leads to a course of treatment that’s “get the patient to believe it’s not real”. And since many of these diseases do have medical causes that are not somatic (but not adequately medicalized for treatment) this gets offensive after a while.