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Comment by PaulKeeble | Hacker News Reader

The name ME comes from the observation in the 1950s that the brain stem was inflamed as shown on CT scans run in the Royal free hospital in London (what is now called St Thomas' hospital). In the 1980s they found numerous immune and metabolic dysfunctions in sufferers as well and the list of physiological things wrong has steady increased since. Yet mostly doctors have treated patients with psychology and tried to force them to exercise despite being intolerant to it and despite thousands of papers showing the biology of the disease. None of what medicine has done can be justified, it ignores all the science and evidence.

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No, that's not true. The first CT scanner wasn't invented until the 1970s. There was never any inflammation found: Acheson said that it was always "presumed". The name ME was dropped in the 90s because of a lack of inflammation.

>In the 1980s they found numerous immune and metabolic dysfunctions in sufferers as well and the list of physiological things wrong has steady increased since

None replicated as yet.

Your comment kinda casts doctors as the boogiemen though and I struggle to understand the motive for them to act in this way.

Doctors, generally, want the best outcome for their patients. I find it hard to believe that they're doing something actively harmful that's against accepted best practices, informed by scientific literature, because... they hate their patients?

If there truely were thousands of papers showing a specific biology for the disease that could be targeted and treated why would any doctor ignore that?

Unwillingness to admit they don't know what's happening, memes, resentment of criticism after malpractices.

Any illness with primarily neurological symptoms have a history of medical malpractice and gaslighting.

As early as 1944, an author in the Journal of Nervous and Mental Disease remarked: "The history of prefrontal lobotomy has been brief and stormy. Its course has been dotted with both violent opposition and with slavish, unquestioning acceptance."

The last recorded lobotomy in the United States was performed by Dr. Walter Freeman in 1967 and ended in the death of the person on whom it was performed.

https://en.m.wikipedia.org/wiki/Lobotomy

> Unwillingness to admit they don't know what's happening, memes, resentment of criticism after malpractices.

Let's assume that all doctors fit your description. (I don't agree, but let's go with it.)

What's the alternative? I just can't accept that the vast majority of medical professionals are ignoring a potential cure or refusing to accept that one for ME may exist because it might hurt their egos.

Which is how it's managed to persist because no one believes the victims. This is going to have it's me too moment at some point and people are going to be horrified how widespread it really is.

When it was first suggested that doctors/surgeons not washing hands & medical equipment between patients was harming patients, the majority of the medical community was up in arms calling the person who suggested it crazy and taking it as an attack on their professionalism.

Being medical professionals doesn't educate them away from having the same human flaws and cognitive biases that we all are capable of.

edit: I'd forgotten his name, it was Ignaz Semmelweis - see for example https://globalhandwashing.org/about-handwashing/history-of-h... or https://www.npr.org/sections/health-shots/2015/01/12/3756639...

It took some 20 years for this to become an accepted truth.

I remember learning about a physician who helped his sister with child birth and she died. He was aware of the washing hands but ignored it. I believe he ended up committing suicide as he wasn’t able to cope with basically killing his sister due to his ignorance.

https://old.reddit.com/r/AskReddit/comments/15shhd4/who_was_...

> "He didn't discover it, he was told by midwives over and over and over until he looked into it. Midwives at the hospital observed that when doctors delivered babies, mothers were at a higher risk. Any housewife knew that food would spoil faster if handled with dirty hands and they always used vinegar solutions to clean their hands, tools, and surfaces. Any housewife would do this and midwives did it because mothers and their babies are more important than pumpkin preserves. Only doctors never washed their grubby hands while it was a deeply ingrained habit in most midwives. Semmelweis listened to women. No wonder they locked him away."

Which is uncited/unsupported, but back in the Black Death time of the 1660s: "The villagers established a system of boundary stones around the village’s periphery, boring holes into the rocks and leaving coins soaked in vinegar – they believed it acted as a disinfectant – in the holes. Merchants from surrounding villages would collect the money and leave bundles of meat, grains and trinkets in return." - https://www.bbc.com/travel/article/20151026-the-sleepy-villa...

And from the same Reddit thread:

> "Oh again with this "before Germ Theory no one knew anything about disease!" bullshit. We always knew dead and dirty things caused disease. Dead animals for artillery ammo, dead animals buried by wells, leaving your swords in latrines. We also knew how copper and silver could help heal and prevent disease."

So, it's not like Semmelweiss proposed Germ Theory, or was the first to observe a connection between death and disease, or between 'disinfectant' of some kind and reduced disease. And https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1299347/ says:

> "(notably Alexander Gordon of Aberdeen) had shown that puerperal fever was contagious some 40 years before Semmelweis. The mortality rate in lying-in hospitals did not fall but rose after Semmelweis' treatise was published, and his ‘much-cited but seldom-read’ thesis is immensely long (over 500 pages) and so badly written that it is almost unreadable. [...] Semmelweis deserves to be remembered for his observation in 1847 that making medical students wash their hands in a disinfectant solution before going from the post-mortem room to the lying-in wards of the Vienna lying-in hospital, led to a fall in mortality due to puerperal fever from a very high level to a moderate level. [...] After his death in 1865, Semmelweis was totally forgotten, not only in Vienna but also in Hungary where he was born and to which he returned in 1850. It was not until the late nineteenth century that the introduction of Listerian antisepsis applied to obstetrics led to a steep fall in deaths from puerperal fever. Only then was Semmelweis' work recalled and his faults forgotten."

Which is fine, he shouldn't be knocked, but how did it take 200 years for humans to decide to use the tools that were already internationally known (vinegar) to a large number of people (housewives, midwives) to avoid some kind of death-related contamination, on childbirth and hospital and post mortem scenarios? And why did it take a guy writing a 500 page near-psychosis rant?

Was that low hanging fruit and if so, how much more of that is still in the world today?

Doctors generally want the best outcome for their patients, but are heavily optimized for what they see most often.

If 90% of your patients come in sneezing and it's a flu for 30 years, then you generally give them advice for handling a flu and it works most of the time. But that also means you have a tenth of the experience handling the edge cases, at best.

Confounding variables make this a lot worse, like people having multiple symptoms, or not telling the doctor things because they felt dismissed before, or that they stopped seeing them because they gave actively harmful advice.

Having a lot of experience with doctors is what has convinced me medical training needs reform. Doctors actively ignore patients telling them objective factual reasons their advice is incorrect or harmful, and treat you as a hypochondriac for arguing.

I have stopped seeing a number of doctors over the years after they looked at my medical history and said "let's try X again", and when asked why, "just to see", when I have already tried X and two or three other medications in the same family as X, in the history (often from their own larger department, not something I provided), in the last 2 years.

I have stopped seeing doctors over me telling them that raising the dose of a medication made me much worse and having them then cut the visit short by leaving the office, saying they were late for something else, and telling me they were writing a script for double the dose as they left (and no, the drug in question did not have strange dose-response relationships like, say, Seroquel).

I have stopped seeing doctors over them insisting I just had a cold when I told them I was too exhausted to reliably walk two blocks to their office without an escort, every day for a week, not sleeping, and unable to keep any food down, without changing their mind, when I turned out to have pneumonia.

None of them were trying to be harmful.

> the Royal free hospital in London (what is now called St Thomas' hospital)

??? The Royal Free is in Hampstead, and still exists. St Thomas’ is on the south bank of the Thames at Westminster bridge.

"Tried to force them to exercise ... ignores all the science and evidence"

This is a baseless claim, there's a Cochrane review showing exercise is beneficial. Pacing appears to be a common strategy, and it's exercise in of itself.

Pacing is different then the kind of exercise your run of mill doc was prescribing.

Doctor isn't writing a prescription for exercise, they're suggesting you work towards performing more of it because the best (limited) clinical evidence we have suggests it helps.

However, if you reach the threshold that triggers post exertional malaise, it can take weeks to get back to your original baseline, if you get back at all. Exercise can be dangerous to ME/CFS sufferers if it isn't carefully moderated.

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