5 ms·

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

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.

darrenf 3y ago
> 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.
maxehmookau 3y ago
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?
- hotdogscout 3y ago
  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 https://en.m.wikipedia.org/wiki/Lobotomy
  - maxehmookau 3y ago
    > 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.
    - PaulKeeble 3y ago
      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.
    - swores 3y ago
      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-handwashing/ https://globalhandwashing.org/about-handwashing/history-of-h... or https://www.npr.org/sections/health-shots/2015/01/12/375663920/the-doctor-who-championed-hand-washing-and-saved-women-s-lives https://www.npr.org/sections/health-shots/2015/01/12/3756639...
      - codeTired 3y ago
        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.
      - jodrellblank 3y ago
- rincebrain 3y ago
  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.
soudiere 3y ago
"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.
- Workaccount2 3y ago
  Pacing is different then the kind of exercise your run of mill doc was prescribing.
  - soudiere 3y ago
    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.
    - squidsoup 3y ago
      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.
cpncrunch 3y ago
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.

darrenf 3y ago

> 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.

maxehmookau 3y ago

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?

hotdogscout 3y ago
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 https://en.m.wikipedia.org/wiki/Lobotomy
- maxehmookau 3y ago
  > 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.
  - PaulKeeble 3y ago
    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.
  - swores 3y ago
    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-handwashing/ https://globalhandwashing.org/about-handwashing/history-of-h... or https://www.npr.org/sections/health-shots/2015/01/12/375663920/the-doctor-who-championed-hand-washing-and-saved-women-s-lives https://www.npr.org/sections/health-shots/2015/01/12/3756639...
    - codeTired 3y ago
      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.
    - jodrellblank 3y ago
rincebrain 3y ago
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.

soudiere 3y ago

"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.

Workaccount2 3y ago
Pacing is different then the kind of exercise your run of mill doc was prescribing.
- soudiere 3y ago
  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.
  - squidsoup 3y ago
    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.

cpncrunch 3y ago

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.