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

[Hubris]

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.

There's a reason MS isn't called occasional mobility issues syndrome, and schizophrenia isn't called chronic delusion syndrome. Or autism chronic social awkwardness syndrome.

It's much easier to dismiss and misunderstand an illness if it's named after only one of the many symptoms. Coincidentally, ADHD is named like that and it's the most contested illness in psychiatry by far. The thing that saved those patients are stimulants working extremely well for the symptoms. They really lucked out, otherwise they would have been screwed like we are.

90% of doctors still have no idea what CFS is supposed to be and never heard the term ME.

 

[rvallee]

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.

A few years ago Wessely had an interview, probably the desert island music thing, where he was asked the big takeaways from his career researching "chronic fatigue". One of the things he mentioned is that at first he thought it was depression, but they were surprised to find out that it isn't. He will likely answer differently depending on who asks, and whether there are microphones around, but he did say that.

Obviously he is well aware that something like 90% of MDs believe exactly that, based on his own assertions and that of his fellow ideologues, and in fact apply it as if true. I don't know what it says about someone that when asked to name the big breakthroughs he had in his career he names something he knows is clearly false and is used "incorrectly", but it's nothing good in any context. It clearly doesn't bother him, so I can only assume that he knows, is fine with it, and simply lies whatever way makes him look good in the present moment, knowing it makes zero difference how much he contradicts himself later, or before, or back and forth.

Actually, earlier today I just randomly realized how a few years ago we went through some BS about him and Wessely retiring, again, from CFS research and now Sharpe has been back at it because of the Long Covid money for 3 years and it makes zero difference. What a scam these people are. But they can lie with complete impunity so it's frankly hard to blame them. There is so much blame to go around here when obvious liars are allowed to say whatever they want.

 

[Hubris]

https://old.reddit.com/r/doctorsUK/comments/15mpc2o/nhs_told_to_stop_blaming_me_patients_for_being/

Well said. The subjective nature of these symptoms is a huge part of it too. These people claim to be incredibly unwell but are invariably never in actual distress.

I know it's not necessarily fabricated, but it feels like it

Hot take: ME, CFS, fibromyalgia, (some) long covid, etc etc are all somatic manifestations of shit life syndrome. Source control is beyond the capabilities of clinical medicine. They're trying to use the health system to patch up symptoms of a decaying society.

It's also symptomatic of a personality type as well. You can smell people with these illnesses from a mile away based on their attitudes and behaviour.

More insights from the brilliant minds of r/doctorsUK.

I have to say though, shit life syndrome would be a pretty accurate name for my illness. It's just that, what those doctors consider a "shit life" would still be an unreachable dream for me. Hmm, how about "unfathomably, unimaginably shit life syndrome"? Yeah, that's about right.

 

[Sid]

Who is he to make that determination that your life is shit? My life pre-ME/CFS wasn’t great by any means but it was my life and I’d like it back. The only life I get was robbed from me by this stupid illness.

 

[Hubris]

Who is he to make that determination that your life is shit? My life pre-ME/CFS wasn’t great by any means but it was my life and I’d like it back. The only life I get was robbed from me by this stupid illness.

To be fair though, that's what everyone thinks. Everybody judges your life. That's why nobody wants to research this illness and when they do they are usually tone deaf and don't understand things like PEM at all (which you could easily understand if you just listened to the patients without prejudice). Some doctors have fewer filters than others and say the quiet part out loud. And they always get a lot of upvotes.

 

[Hubris]

From a recent thread (2 days ago) on r/residency asking doctors what diagnoses they don't take seriously (I can't link it because the author deleted it):

"A long allergy list is highly sensitive and specific for diagnosing a personality disorder" 813 upvotes

Funny how there are hundreds of doctors doctors/nurses in that thread ready to gang up to mock patients, yet not one of them thinks "hold on, if this association is true, could it be that people with massively fucked up immune systems have brain symptoms rather than psych disorders manifesting imaginary allergies through the power of psychosomatics?".
You know, it's not like there's a million studies out there that show a dysfunctional immune system affects the brain. And people that won the Nobel prize for proving this 30 years ago. But no - let's just ignore this knowledge, patients are crazy and fuck them.

And then people wonder why psychiatry never makes any progress.

"POTS. way overdiagnosed" 471 upvotes
"massively deconditioned weenies with anxiety" 272 upvotes

Endless posts shitting on POTS because "it's trendy on TikTok". Never a medical reason given for it, aside from "lol it's deconditioning ". Never an analytical insight of any kind. Just high school level gossip and pure prejudice. The same stuff they would be saying about gay and black people 50 years ago, I guess.

There are also many arguing that things like gastroparesis (which have a biomarker) are psychosomatic. Their reasoning? Well they are correlated to POTS (which also has a biomarker) so they must be. The logic of a champion right there.

And of course, a reddit medicine thread wouldn't be complete without a 200 upvoted comment claiming me/cfs patients have it so good because they can "pretend to be comatose and not deal with life".

Imagine if you saw a public thread of startup founders laughing how they are scamming investors and detailing all the scams they did, up voting eachother 800x. Discussing how they can tell the investors to fuck off after they stole their money. Somehow I have the feeling it would cause quite a stir. But in medicine, this is just the daily gossip it seems.

 

[RedFox]

From a recent thread (2 days ago) on r/residency asking doctors what diagnoses they don't take seriously (I can't link it because the author deleted it):

"A long allergy list is highly sensitive and specific for diagnosing a personality disorder" 813 upvotes

Funny how there are hundreds of doctors doctors/nurses in that thread ready to gang up to mock patients, yet not one of them thinks "hold on, if this association is true, could it be that people with massively fucked up immune systems have brain symptoms rather than psych disorders manifesting imaginary allergies through the power of psychosomatics?".
You know, it's not like there's a million studies out there that show a dysfunctional immune system affects the brain. And people that won the Nobel prize for proving this 30 years ago. But no - let's just ignore this knowledge, patients are crazy and fuck them.

And then people wonder why psychiatry never makes any progress.

"POTS. way overdiagnosed" 471 upvotes
"massively deconditioned weenies with anxiety" 272 upvotes

Endless posts shitting on POTS because "it's trendy on TikTok". Never a medical reason given for it, aside from "lol it's deconditioning ". Never an analytical insight of any kind. Just high school level gossip and pure prejudice. The same stuff they would be saying about gay and black people 50 years ago, I guess.

There are also many arguing that things like gastroparesis (which have a biomarker) are psychosomatic. Their reasoning? Well they are correlated to POTS (which also has a biomarker) so they must be. The logic of a champion right there.

And of course, a reddit medicine thread wouldn't be complete without a 200 upvoted comment claiming me/cfs patients have it so good because they can "pretend to be comatose and not deal with life".

Imagine if you saw a public thread of startup founders laughing how they are scamming investors and detailing all the scams they did, up voting eachother 800x. Discussing how they can tell the investors to fuck off after they stole their money. Somehow I have the feeling it would cause quite a stir. But in medicine, this is just the daily gossip it seems.

This is the deleted post you are discussing:

https://www.reddit.com/r/Residency/comments/16zx2or/what_diagnosis_do_you_find_hard_to_take_seriously/

 

[SNT Gatchaman]

Like Pandora's box there are a few messages from Hope at the bottom.

Wow. We are a bunch of assholes.

Mom of a POTS patient here. I’d rather have her see an NP any day of the week. Y’all are assholes.

Me: My kid keeps fainting and can’t live a normal life. You: “Nah, she’s totally faking it, better punt the poor kid to a new specialty until we’ve made sure she needs psych.”

Why in the name of the patron saint of doctors who give a flying fuck do you think someone would CHOOSE this?

I’m struggling to understand the logic behind this comment. Your symptoms aren’t as severe as what others with the same diagnosis report. So rather than concluding that all diagnoses represent spectrums and you are experiencing the milder end of the spectrum, you instead conclude that … everyone else is exaggerating?

As frustrating as it is for you, it’s worse for people like me who have to deal with doctors who think it’s a joke.

I was recommended this post out of nowhere on my page. I've never done any medical research online. I was diagnosed with multiple of the things mentioned here when I had never even heard of them before. Reading all of this sure makes me feel like shit.

I see "no tests show anything" being used as a reason to discredit the patients. Well, that'd be because there hasn't been enough research to develop any tests, because the patients are being discredited for being women!

I get that people are frustrated with meeting and helping patients that have serious illnesses and there are no proper tests or medicines. Still, you'd think people who choose to work in a profession that is supposed to help people, would have a bit more empathy or even care the slightest bit about the hell many if the patients go through... I don't see any of that in any of the top level replies answering the question. Like one of the top most ridiculed illnesses here is Fibromyalgia, which not only has life ruining fatigue, but excruciating pain on top. You'd never guess that from reading this comment section written by future doctors. Which just shows why we don't know more about the illnesses; no one cares about women having to live in a bed with constant pain, year after year. How whiny of them to ask for help.

As a doc with fibromyalgia and an unspecified autonomic disorder, I wish more people would take these seriously. I know that social media has created a culture of increased illness anxiety but it's our responsibility to make sure that this doesn't influence us into immediately dismissing everyone asking about these conditions.

Yes! Louder for those in the back! My partner has myalgic encephalomyelitis, and it's incredibly frustrating when medical professionals deny that it could be as bad as described. If a practitioner doesn't understand the condition, they should learn about it instead of being arrogant and dismissive assholes about it.

I hope this is just the gathering place for the most psychopathic doctors and not representative of all of them. Reading this is truly horrific. Fuck these people.

 

[SNT Gatchaman]

It might be preferable if it were a universal ethical requirement that doctors can not be anonymous on social media when discussing medical matters. I doubt all those commenters on Reddit would have the courage to put their name to their bilious statements.

(He wonders, anonymously).

 

[Arnie Pye]

It might be preferable if it were a universal ethical requirement that doctors can not be anonymous on social media when discussing medical matters.

I think that would be impossible to police.

...

On another topic, prompted by the reddit thread given by @RedFox, I would like to know what conditions I have been diagnosed with and what warning flags there are on my medical records. I wonder if I would be given a list it if I asked - I doubt that I would. I'm certain that I've been diagnosed as a drug-seeker since my teens (nearly 50 years ago). If I ever go to my doctor's surgery or to A&E, I have had multiple receptionists over the years who find me in their records then look up and scowl at me. It never seems to occur to anyone that I'm a very bad drug-seeker since I almost never try to see a doctor or nurse. And I've met plenty of doctors who do good impressions of brick walls as I talk - they don't engage with me at all if they can help it. When that happens I know that I'll just be fobbed off with a diagnosis of anxiety or depression, so nowadays I only try to see doctors or nurses if my problem is visible.

 

[Trish]

It might be preferable if it were a universal ethical requirement that doctors can not be anonymous on social media when discussing medical matters. I doubt all those commenters on Reddit would have the courage to put their name to their bilious statements.

(He wonders, anonymously).

Doctors anonymously making derogatory comments about patients and doctors spreading misinformation about medical matters should be outed and dealt with by their bosses and professional organisations.

Doctors who are posting on social media to discuss their own health and science, advocacy etc on issues related to their own or their family's health should be free to remain anonymous like the rest of us.

 

[Saz94]

I think that would be impossible to police.

...

On another topic, prompted by the reddit thread given by @RedFox, I would like to know what conditions I have been diagnosed with and what warning flags there are on my medical records. I wonder if I would be given a list it if I asked - I doubt that I would. I'm certain that I've been diagnosed as a drug-seeker since my teens (nearly 50 years ago). If I ever go to my doctor's surgery or to A&E, I have had multiple receptionists over the years who find me in their records then look up and scowl at me. It never seems to occur to anyone that I'm a very bad drug-seeker since I almost never try to see a doctor or nurse. And I've met plenty of doctors who do good impressions of brick walls as I talk - they don't engage with me at all if they can help it. When that happens I know that I'll just be fobbed off with a diagnosis of anxiety or depression, so nowadays I only try to see doctors or nurses if my problem is visible.

If you're in the UK you can request a full copy of your medical records. I'm pretty sure they're legally obliged to comply under GDPR.

 

[Arnie Pye]

If you're in the UK you can request a full copy of your medical records.

I can request it (and I did, several years ago), but before I was given the copies (on paper) I had to sign a statement that said something like "I accept that my doctor can remove any records from the copy that they consider will be damaging to my mental health or which mentions third parties". I'm paraphrasing because I can't remember exactly what the statement said. Annoyingly, I wasn't given a copy of the statement I signed to take away with me.

 

[NelliePledge]

You

I can request it (and I did, several years ago), but before I was given the copies (on paper) I had to sign a statement that said something like "I accept that my doctor can remove any records from the copy that they consider will be damaging to my mental health or which mentions third parties". I'm paraphrasing because I can't remember exactly what the statement said. Annoyingly, I wasn't given a copy of the statement I signed to take away with me.

it ought to be in your records also if you ask for another copy and they do the same you’d hopefully remember to ask for a copy. I can’t remember if you’ve got a smart phone you could take a photo of it. Xx

 

[wingate]

If these posters are so convinced their views are correct, why not use their real names?

Plus, it would save everyone some heartache - we could avoid making appointments with them, and they wouldn't have to treat us.

 

[Solstice]

It might be preferable if it were a universal ethical requirement that doctors can not be anonymous on social media when discussing medical matters. I doubt all those commenters on Reddit would have the courage to put their name to their bilious statements.

(He wonders, anonymously).

They'd simply discuss it at seminars with likeminded assholes instead of an a forum and we'd never know about it. I personally prefer this as it shines a light on a part of the profession's thinking.

 

[Solstice]

https://old.reddit.com/r/doctorsUK/comments/15mpc2o/nhs_told_to_stop_blaming_me_patients_for_being/

Who is he to make that determination that your life is shit? My life pre-ME/CFS wasn’t great by any means but it was my life and I’d like it back. The only life I get was robbed from me by this stupid illness.

More insights from the brilliant minds of r/doctorsUK.

I have to say though, shit life syndrome would be a pretty accurate name for my illness. It's just that, what those doctors consider a "shit life" would still be an unreachable dream for me. Hmm, how about "unfathomably, unimaginably shit life syndrome"? Yeah, that's about right.

I'd imagine a lot of people actually had a pretty good life. I did. Found school to be incredibly boring but even there in recess or when we cut class we had a lot of fun, going out on weekends, playing sports and going to the gym was great. Something threw a spanner in the works there. If doctors actually asked patients about these things instead of just assuming they might quickly find out the truth. But that might for some involve conversing with people deemed below your station.

 

[Mij]

Interesting that an Emergency Medicine doctor is posting on Reddit for info on how to deal a 'difficult' LC patient. Receiving decent suggestions though and not 'it's all in their minds", unlike pwM.E.

 

[Hutan]

One of the comments:

I’d reassure them they’re not acutely ill and punt.

Doctors so often don't seem to get that being 'reassured' that everything's fine when you can't do a quarter of what you used to do and feel bloody awful isn't actually that helpful. Reassurance featured heavily in clinical guidance for managing Chronic Fatigue I was looking at the other day - so patronising.

Here's another one, I've put in a spoiler cos I stopped reading at that point, and maybe you don't need to see it right now.

Spoiler: a doctor gives advice on things s/he doesn't know about

A few tactics for steering the conversation per your discretion:

"I understand it must be frustrating for your body to not feel like it was" And "Being vaccinated shortens the course" And "People do recover, it just takes time. But it is safe." And "Regular exercise helps restore the body's metabolic strength and balances the ANS"

• evidence based reassurance
• gives an empowering route
• honestly, everything gets better w/ exercise
• they leave feeling heard

Or "Getting vaccinated helps resolve the symptoms. Which arm do you want it in?" "Maybe you're weak because your lazy?

• they will leave.

 

[bobbler]

Interesting that an Emergency Medicine doctor is posting on Reddit for info on how to deal a 'difficult' LC patient. Receiving decent suggestions though and not 'it's all in their minds", unlike pwM.E.

JUst going to copy and paste these phrases because I think they are good and might be alternatives to eg 'energy management' which can get misconstrued:

"Discuss energy conservation techniques and supportive measures. They compare post covid to ME/CFS"