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

[Hutan]

The #1 feature of ME/CFS is the manipulative, obsessive need for sympathy/attention/drama.

It is frightening to think of being judged in this way, especially when ill in hospital.

While nothing we do will convince this person and others like him, I think this is another reason why we need to move to 'ME/CFS' as the name and leave ME well behind. Telling a doctor like this, or even someone half as bad that 'I've got ME', or 'My ME has become worse' or 'Could I lie down somewhere because I have ME?' is likely to have them sniggering about it all being about us, 'look at me, me, me'.

 

[V.R.T.]

Came across this series from a month back from an NHS orthopaedic surgeon and departmental clinical director. I won't put the quotes behind a spoiler as I think people are familiar with this thread and what we're up against, but worth recording.

Caution: ahead there be dragons















Link | Link | Link | Link

(As invited, I have indeed saved those comments and look forward to showing him he was wrong at some point in the future.)

Well, I clicked on this thread without thinking and I now want to be sick.

I cannot say this strongly enough: this attitude is the reason I am severely disabled. This prejudice and the weird culture of silence and patient manipulation it creates are the reason my GP thought the way to help me was to convince me my illness was all in my head. I am living proof that they are wrong and yet there is somehow no way to prove that. I wish more than anything I had been able to hold out against the doctors telling me there was nothing physically wrong with me. Telling me to push and push. I wanted to be a good patient and not one of the people described. This attitude destroys lives. It says don't be like this stigmatised group and makes you so sick you can't hide the fact you are one of them anymore.

This attitude is poisonous and frankly any doctor who displays this level of hatred toward any population of sick people (whatever they believe to be the cause) should be struck off.

I look forward to the day this fool eats their words but when I read stuff like this I feel deeply hopeless.

 

[Sean]

Phew, what a massive arsehole.

I see he is an orthopaedic surgeon, which specialty has [checks notes] absolutely nothing to do with ME/CFS.

On the good side, the fact that he is so open and abusive and extremist means he will have precisely zero room for excuses when the time for accountability comes. And it will.

Noted for future reference.

 

[Mij]

This bit quoted above is surely more revealing about the attitude of the doctor who wrote it than the reality of whoever he has encountered with ME/CFS.

I always wonder who these 'doctors' are? Why are they taking the time out of their day to post on reddit to begin with? Unprofessional.

 

[Turtle]

I always wonder who these 'doctors' are? Why are they taking the time out of their day to post on reddit to begin with? Unprofessional.

The frustrated ones, just acting out. Probably no knowledge about ME/CFS whatsoever. Just about the patients characters, they are all the same, females.

I was trained in iatrogenic damage by peads. It took 8 years to find meniscus and ligament were goners. Another 6 years to "find" a bonebridge; not by 2nd arthoscopy but because I was going to get a new ligament, bonebridge removed no new ligament. All before ME/CFS.
Peads are not always ortho.
This one will have to eat his own words, one day.

 

[Utsikt]

I always wonder who these 'doctors' are? Why are they taking the time out of their day to post on reddit to begin with? Unprofessional.

Doctors have lives outside of being at work. I don’t see anything wrong with being on Reddit per se. But I see a lot of very wrong things with his opinions!

 

[JemPD]

The #1 feature of ME/CFS is the manipulative, obsessive need for sympathy/attention/drama.

God, why do I read these things, why oh why when I am warned of dragons, do I wander out to get my heart burned again.

I mean the rest of it... ok, he's simply wrong. Its the character assassination that hurts. No doubt that is just my 'obsessive need for sympathy'.
I wonder where this sympathy comes from, or the attention, the drama? Where is this fabled sympathy & attention?

Here alone in bed day after day with only my carer and you guys for company.

 

[rvallee]

Ha! And people actually froth at the mouth talking about one of the problems with LLMs is that they are often confidently incorrect. At least LLMs aren't that emotionally unhinged and oddly obsessed with trivial details as distractions. The most shocking part of how rapidly AI will spread into health care is that it will be preferred both for its accuracy, but also for its superior empathy. And also they will actually accept facts, unlike people like this dude. Those comments are just raw bigotry.

Though I must say that the tone and oddly emotional tenor of those comments is something commonly found in conspiracy fantasy communities. It has this odd feel to it, of someone talking merely about how they would like reality to work, but are clearly indifferent to whether it does, a bit manic and avoiding eye contact and all that.

 

[Arnie Pye]

@rvallee

LLMs?

 

[Arnie Pye]

Came across this series from a month back from an NHS orthopaedic surgeon and departmental clinical director. I won't put the quotes behind a spoiler as I think people are familiar with this thread and what we're up against, but worth recording.

Caution: ahead there be dragons















Link | Link | Link | Link

(As invited, I have indeed saved those comments and look forward to showing him he was wrong at some point in the future.)

I don't really need it, but just in case I need a reminder of why I don't see doctors any more for anything invisible I'm going to bookmark the above quoted reply.

 

[Utsikt]

@rvallee

LLMs?

Large Language Models. It’s a type of AI (artificial intelligence), an example is ChatGPT.