Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

I know in marketing there is the need to get people to relate eg if giving a figure giving something ballpark to give a sense of what that magnitude means.

I hate to say it but women feeling awful or collapsing is just a bigotry people are happy to write off and not try to imagine could happen to them. I think it’s that simple for many. Having said that the sleep thing has been probably the aspect that has made me most rejected and unacceptable to laypersons and medics but those weren’t neurologists

Maybe the treatment (I wasn’t aware there was one) helps as it means they can be in that easier ‘do their job mode’ where there is a drug and then a follow up and dosing etc

one weird thing to note is that I was taught that most people’s circadian rhythm is nearer to 25 than 24hrs. That’s obviously different to the sleep disorder in symptoms, reality and almost certainly measurable somewhere in your body, but I’m intrigued by what it is they think they can see and if/how that actually distinguishes between the two.

 

Agreed, see: https://www.s4me.info/threads/chall...-the-medical-profession-where-are-they.24361/

 

That's something I said several times over the years, and I really don't know what to do with this. Our problems aren't unique, they are part of far larger and more fundamental issues within the profession. I don't think we can make much progress without either addressing those, reforming medicine from the ground up, should be easy peasy, or somehow getting the kind of "off the black list" that peptic ulcers got by being able to come up with both a comprehensive theory and safe and effective treatment at the same time. Which is almost guaranteed to not happen for us, it's way too complex.

I see those issues everywhere and they are so bizarre, they almost amount to calling the profession negligent and incompetent, and frankly it seems right and accurate. They are doing poorly, progressing slower than all the other expert professions means they have gotten way behind everyone else, while moving slower still as complexity builds up. But they can't handle this, any affront on their expertise, even accurate, is usually met with doubling down even stronger on being wrong. It's flexing power just because they can most of the time, but they really can most of the time so what are we supposed to do?

That's why I say often that our way out is almost certainly through AI. We can't get through the humans because those issues are found in human nature, they are everywhere. They are basically the medical equivalent of "I'm just doing my job", where most of the time not doing so would cause them personal problems, so they just comply with the orders, doing the wrong thing, because there is no alternative. That's found everywhere, absolutely not unique or particular to medicine. And the higher you go, the more political it gets, so no hope there. We've seen public health and medical leaders supporting eugenics, if not proudly at least without any protest. No help there.

We're dealing with politics, and everywhere medicine doesn't have sound biological science, it's all politics all the time. Except when it's ideology, so basically just different politics. We have a problem with how human nature works, and how easily it is to dismiss other people when they aren't our responsibility. Especially people who are struggling, who can't work their weight. Our hunter-gatherer ancestors used to leave those people behind, now we have institutions doing that for us, except no one's actually going anywhere.

 

Merged thread

Interesting Reddit Threads

This is a general thread for people to post Reddit posts/threads, preferably related to ME or similar misunderstood conditions.

I'll start:

Code:

https://old.reddit.com/r/ChronicIllness/comments/14fo630/i_tried_a_strategy_for_getting_testmedications/jp6szq0/

 

Code:

https://old.reddit.com/r/JuniorDoctorsUK/comments/14zx7um/pulse_row_reignites_nice_mecfs_guidance_as/js0m6t5/

Apparently most of us are just subconscious malingerers.

 

You have to be really dumb as a malingerer to choose ME, nobody will ever give you disability or any of the secondary benefits you are looking for. Even if it's "subconscious", you would realize it easily. If you were "subconsciously" trying to get fat, you wouldn't stuff yourself with vegetables would you? You'd be eating things that make you fat.


Doctors say these things to justify the neglect more than anything. "Most patients are malingerers, some aren't but they just slipped through our fingers damnit "

 

The subconscious secondary gain theory couldn’t be more insipid, and just reveals the conscious discriminatory attitudes of doctors. You’re faking, which requires willful action, but in a subconscious way???

 

The losses far exceed the gains as far as I can see. Losses include moronic pimply junior doctors feeling entitled to speculate about your mental state and motivations.

 

Code:

https://old.reddit.com/r/doctorsUK/comments/15di7df/downplaying_a_patients_symptoms_based_on_gender/

Interesting thread exposes gender bias and how discrimination toward men is not more prevalent but more socially acceptable.

 

That’s not really what the thread does at all. In summary, it best serves to show that all kinds of prejudices are at work when symptoms are dismissed, and that at least some doctors are getting better at recognising those prejudices. Which is laudable.

One contributor suggests that clinicians are more sympathetic to persons of their own sex. Maybe. But there are clearly a host of factors at work which make some doctors empathetic and some more dismissive, and gender almost certainly plays far less of a role than the attitudes inculcated in clinical specialisation.

 

Code:

https://old.reddit.com/r/medicine/comments/15i7cw7/autoimmune_encephalitis/

Autoimmune encephalitis. Mentions rituximab as a treatment. @Jonathan Edwards

 

Code:

https://www.reddit.com/r/illnessfakers/comments/15mbv7m/jessi_is_experiencing_medical_burnout/jvi71t1/?context=10000

Med student shares their astonishingly ignorant views of ME/CFS:

Edit: * Note the author here is on a subreddit discussing subjects that almost certainly do have Munchausen's, which is important context for their first comment.

 

Funny that most of what they say is right. Here's a heavily edited version:

While the premises are right, the conclusion is definitely wrong. But they correctly state that the lack of a test and usage of loose diagnostic criteria (not requiring PEM) likely leads to many people, including some people with mental disorders, being misdiagnosed with ME.

 

Literally all of the above are things 1) medicine is responsible for, 2) that we have been raising forever and 3) have been constantly vilified for saying even though they're simple and obvious.

And they still blame us anyway. Really disturbing, especially that they see the problem, they just can't imagine medicine bearing any blame whatsoever. Even though it's blatant.

 

Ummm, what? No it doesn’t.

 

One can see that the BPS disinformation is working really well.

They have told doctors that CFS is fatigue. The doctors then think CFS is an unspecific nonsense construct that most closely resembles depression.

 

That comment has now been deleted. I would have liked to ask them for evidence of their claim that 1/3 of CFS is factitious or psychosomatic. Their usual excuses are appeals to authority and appeals to popularity, and perhaps a few studies where there were so few participants that no conclusion could be made.