I have a friend who worked in research for rare, chronic, and misunderstood diseases for a few years. Post Treatment Lyme Disease Syndrome (PTLDS or just PTLD) is well accept by now.
The problem they encountered was that so many of the people who presented with "Chronic Lyme" diagnoses were either self-diagnosed from the internet or diagnosed by uninformed primary care doctors who used it as a catch-all for symptoms they couldn't diagnose. Many had never received positive test results, or they had received positive test results from cash-pay alternative medicine labs who used their own in-house alternate tests.
It was really depressing to hear stories about people who had been misled into spending tens or hundreds of thousands of dollars on things like year-long courses of expensive, IV antibiotics for a condition they most likely did not have. Even the idea of a persistent infection hasn't held up to scrutiny. The current line of thinking is shown in this article, where persistent particles of past infection might cause ongoing immune-related symptoms. Those symptoms would not respond to the high-dose, long-term antibiotic therapy pushed by the alternative medicine Lyme treatment providers, obviously.
So while it's a difficult topic, having some better mechanism to separate the verified Lyme cases from the self-diagnosed or those wrongly diagnosed is actually very important for improving acceptance of the condition. It's tragic that many with persistent symptoms of true Lyme infections have been dismissed, but it's also tragic that many with non-Lyme conditions have been misled into thinking that "Chronic Lyme" is the explanation for all of their problems contrary to the evidence. Getting the latter group out of the "Chronic Lyme" mindset and on to a path where their true underlying condition can be addressed, whatever it may be, is a win for them.
Had I been less skeptical, it would've been very easy to conclude that I had "chronic Lyme". Thankfully I knew better than to take the first test at face value and kept pushing for answers to find out what was behind the results-warping inflammation. But there have to be too many people out there with very real symptoms and problems who are misled into clinging to bullshit answers.
But some things are just really complex and the root causes are very, very difficult to pin down. There was a lot sad about COVID, but like 4000th on the list is how it revealed the human dynamics that lead to chronic diseases being overlooked because science has no valid explanation for what's happening to patients. I say this as someone who suffered from Lyme Disease for a number of years.
Long COVID? (looks up "party" stance)... that doesn't exist. Eat Apples.
Thankfully the symptoms abated eventually, but doctors couldn't really find anything and none of the diagnostic tests turned up anything that interesting. Ultimately they thought it was probably minor viral encephalitis, but the diagnostics for this are quite bad, so no confirmation either way.
You can't really convince doctors that you're not the kind of person with a propensity for imagined symptoms (probably a lot of hypochondriacs tell them that), so there's not really anything you can say to argue when a doctor implies you're just imagining things.
That and other experiences made me realize:
A) diagnostic technology is really quite poor (e.g. at the time, only one lab (one of the UC schools, I forget which) was even theoretically capable of testing for encephalitic viruses outside of 2-3 very common ones, and all of the tests had ridiculous limitations on e.g. sensitivity window)
B) most doctors really overestimate their own intelligence, and they act accordingly
C) you and your friends/family are the only ones who (can afford to) actually care about and put serious effort into your medical outcomes. If you actually want to get good medical results, you basically just have to diagnose yourself and convince some doctor to go along with it without triggering their sense of superiority