This stupid country just lets people fucking die and get disabled everyday. I’m sick of it. My tax dollars just go to killing and dismembering people abroad. Fuck fuck fuck.
This stupid country just lets people fucking die and get disabled everyday. I’m sick of it. My tax dollars just go to killing and dismembering people abroad. Fuck fuck fuck.
I think somebody could easily conflate the two and use the shortened version, especially if they’re not the person with the disease and don’t know better.
Not an expert or anything, didn’t know it was considered fake. I’d just heard it mentioned in the past, and given that there are diseases with confirmed long-term persistent symptoms (polio, COVID, I think chickenpox?) I assumed it was valid.
Imo this link you gave doesn’t really support dismissing chronic lyme as fake. It does report that prolonged antibiotics usage does nothing to help, but then at the bottom clarifies that there are non-human tests being done to see if infection does persist in some way after the course of antibiotics.
I take issue with the idea of inherently trusting doctors to always know best when many are generalists and just don’t know things (see how doctors have reacted to the “end of COVID” when it’s still having random surges), to say nothing of the long history of dismissing patient claims (especially of minorities and women). For a personal example my aunt had to go to 3 different doctors to get the tests to determine that she had endometriosis. Imo we may as well believe that those reporting to have “fake” diseases usually do have real symptoms, even if they’re wrong about the causes. All of this is complicated by fake doctors plugging fake treatments, obviously, but it’s easy to see how people end up there when the medical system seems to fail them. It’s probably not helping that our healthcare is brutally expensive in the US which predisposes people to look for alternatives (most of which are indeed quackery).
post polio syndrome, long covid and shingles. all real. All preventable with vaccines. :) PPS poorly understood due to wide spread vaccination especially in wealthy countries = few incentives to study it. (Actually we should have eradicated polio by now.) Shingles now has a specific vaccine for those already infected with chickenpox (98% of adults).
how have they reacted?
well I tried to find out on my own here is what I found. It’s from 2022. Knowledge and experience of physicians during the COVID-19 Pandemic: A global cross-sectional study . Kind of come ci come ca
So in the comment you replied to I posted 3 documents. The primary one was published by Infectious Diseases Society of America, American Academy of Neurology, and American College of Rheumatology. Those are organizations of specialists, not “generalists”.
But also included 2 documents that were aimed at non-specialist doctors to provide context about what those people might have available to them. They are shorter, less comprehensive overviews of the current state of knowledge for someone who needs to brush up quickly. Like a family doc who sees something once in a long while. And they are more accessible to someone who doesn’t want to spend all weekend reading journal articles. Like most of Hexbear I assume. Between the three of them I think they provide a response to the claim “they don’t even know how to treat it”.
1 of those was published as a supplement to the full guidelines by the same authors, and the other by American Academy of Family Physicians (AAFP), which in the US is the organization that sets the standards your family doc is held to. In any case, they (and all other similar publications) are all in full alignment with the longer guidelines because there is no question about “chronic lyme disease” in the conspiracy meaning of the phrase.
Well that sucks. :( Endometriosis is notorious for this sort of diagnostic delay. One thing to consider is that the test required to diagnose is a surgery and we also don’t want doctors sending everyone to surgery at the drop of a hat. It does make sense to proceed through a diagnostic process starting at less invasive/risky. There are opposite problems in medicine where this isn’t adhered to. Example: Extremely high levels of c-sections which do not have any benefit and carry a lot of risks. (Especially in facilities which pay more for c-sections! big time correlation.)
If you are interested, for the sake of comparison to the above, [here is the AAFP about dysmenorrhea (painful menstruation, which would have been the symptom your aunt went in with) to see the different things they would be considering. and on endometriosis specifically. They have some other interesting-looking stuff on the subject in the sidebars but unfortunately pay-walled >:( Maybe can find on libgen scihub ebookee etc if motivated. Or also Clinical diagnosis of endometriosis: a call to action - American Journal of Obstetrics & Gynecology for a specialist viewpoint. Comparing these to the lyme disease documents it’s clear that endometriosis and “chronic lyme disease” differ substantially: one exists and the other is fake. There is zero dispute about the existence of endometriosis.
if interested in a much+++++ more nuanced look at the question of the effects of individual and collective experience of health care on trust of doctors (et al) I would suggest Harriet Washington’s Medical apartheid : the dark history of medical experimentation on Black Americans from colonial times to the present
When people talk about “chronic lyme” they are making specific claims about a pathogen, pathology and treatments. Which are false.
I am not arguing about anyone’s symptoms. Which we have no idea what those might be in the case of “so many people I know” other than they “fucking die and get disabled”. Virtually nobody dies of lyme disease. We got 99 preventable causes of death but “chronic lyme” aint one of them. The context leads me to be extremely skeptical of claims re disability.
Shit that’s my bad, they were inline so my brain just saw them all as a single link. As you say, the other two are definitely more for the layperson and specifically argue against CLD’s existence. A re-read of the NIH link also led to me noticing something important in the first section I’d missed on the first read-through, where they explicitly state that “CLD” is not to be used because it’s quackery, and so serious study should use the term “Post Treatment Lyme Disease Syndrome”. That’s also definitely on me, and I find it very frustrating that they’ve had to change the language used to distinguish from the quackery when both terms sound interchangeable without knowing more.
I think you might’ve misunderstood me, I was referring to the family doctors an individual will interact with. While the bodies of guidelines and research they should be pulling from are legitimate, stuff like that stat of 46% of doctors failing to take appropriate COVID precautions (in 2022, I’d guess it’s much lower now) doesn’t inspire confidence in the ability of those individual doctors to properly interpret the facts when interacting with patients.
I think our perspectives on the medical system are mostly in agreement, but I was ignorant on this topic, which led to me being more willing to take OP’s word uncritically. Thanks for all effortposts!
Well I used to believe in “chronic lyme” and various other stupid shit. Ask me in 2044 and I’ll tell you what fake ass shit I believed in 2024.
I added extra line breaks in one comment. sorryislurredmyurls. I think the top comment with the lyme guidelines is clear enough though probably no one is clicky cklicky. (Weirdly no comments from OP surprised that there actually is treatment for lyme disease.)
Re the doctors: come ci come ca. But the family doctors, the ones you will meet out in your life, should be at least vaguely aware of the AAFP stuff. They actually don’t consider themselves “generalists”, but rather specialists in family medicine and participation in AAFP is a key part to that. So those people are in receipt of this information. Obviously YMMV. I am not aware of any front line profession that doesn’t struggle to adhere to adhere to COVID guidelines. But again to contextualize there is no controversy about whether COVID exists. Need to keep things in scale.