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Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS
Reddit definitely tends regressive, and I don’t disagree that the views aren’t representative of what doctors think generally, but I wanted to point out that that Residency subreddit has a 175k or so subscribers, which is far from small, however many bad actors and rubber neckers are also subbed.
To me the ignorance and dismissiveness tracks broadly with what I’ve experienced over the years, though I think more providers would rather not “waste” their time with me than hold as hateful views as those expressed. I certainly think those are well in the minority.
To me the ignorance and dismissiveness tracks broadly with what I’ve experienced over the years, though I think more providers would rather not “waste” their time with me than hold as hateful views as those expressed. I certainly think those are well in the minority.
With regards to the last quote. I always make sure to put on "Be still my beating heart" by Sting and it immediately makes my heart less anxious when standing up, POTS has since no longer been an issue.
Mithriel
Senior Member (Voting Rights)
I have always been wary of the call to teach ME in medical schools. This sort of subreddit makes me feel it is still a gamble.
In the past they would have taught the BPS views to our detriment. Today it might be different but I suspect that at best the two different viewpoints would be given equal weight.
Of course, I am cynical after watching every step forward over the decades be squashed down by BPS views.
In the past they would have taught the BPS views to our detriment. Today it might be different but I suspect that at best the two different viewpoints would be given equal weight.
Of course, I am cynical after watching every step forward over the decades be squashed down by BPS views.
I think the history, science, and personal narratives are persuasive when they’re given a chance. Social media thrives on strong reactions to often barely consumed content, so I tend to view it more as a general barometer of awareness.
I was one of the patients who spoke at Quinnipiac’s program for ME/CFS this year. There wasn’t enough time for questions to really get a sense of what the students thought and I was too out of it to read the room, but I think it made a difference. We have a compelling story. Most just never get or give themselves the chance to hear it.
Not a doctor, just a cruel, ignorant git - unfortunately in a position of power over those that should be being protected. He's taken down the comments screen-capped in the above Twitter thread. User profile here.
Discussing having played Warhammer 40,000 for 40 years —
Previously —
Three months earlier —
I'm disabled and I can't work. I can't get mental health support or medication to help my debilitating chronic pain and fatigue, and I can't afford to pay for private healthcare. I can't get insurance because of my existing chronic issues. So I can't get better in order to look for work despite having a degree in law. I get about 11.6k a year in benefits to live on (pip and UC).
I'm 25 and I'm stuck living with my parents who are retired and in council housing which is full of horrendous mold and damp. I can't get a council property although I've been on the housing register for several years. I was classed as lowest priority on the housing register.
I can't afford to privately rent a property, if they would even accept me as a disabled person claiming benefits. I'm not allowed to save over x amount or my benefits get reduced. I'm basically waiting for the day I'm left alone with nowhere to live at which point I will die on the street because I physically can't work. I barely even brush my hair it's so painful. But tell me again Mr Anderson how I'm not living in poverty.
I'm 25 and I'm stuck living with my parents who are retired and in council housing which is full of horrendous mold and damp. I can't get a council property although I've been on the housing register for several years. I was classed as lowest priority on the housing register.
I can't afford to privately rent a property, if they would even accept me as a disabled person claiming benefits. I'm not allowed to save over x amount or my benefits get reduced. I'm basically waiting for the day I'm left alone with nowhere to live at which point I will die on the street because I physically can't work. I barely even brush my hair it's so painful. But tell me again Mr Anderson how I'm not living in poverty.
I literally knew, as I clicked on your profile 'this will be fibro or CFS or some such crap.'
Yep, what a surprise.
Yep, what a surprise.
I would imagine it wouldn't be too hard for people to work out who he and his employer are from his posts and I would be unsurprised if this attracts the attention of a lawyer.
I still feel a rub my eyes in disbelief moment when I read the anti-mental health ‘psychology’ (only a psychology in as far as it being someone’s warped mindset ie a bigotry and bps is weak attempts at justifying it with sophism that neither adds up completes the circle nor makes sense) taught into professions which I’m pretty sure includes it being embedded ‘techniques’ into areas like IAPT/course deliverers, teaching, physio, chiro, ‘management’ (low down normally for people ‘aspiring one day to be a boss’).
It’s just gobsmacking that for everything else the message is ‘don’t be a bigot’ and to at least learn about equality and behave (sad but there are areas with implicit racism and sexism still I hear so I’m not being naive in pretending there) yet this is blatant indoctrination of people; who if not having empathy themselves had been held fast to not be cruel and bigoted by social pressures; being taught really nasty opposite stuff.
And the idea it’s not mental health stigma when the emphasis is on ‘watch out people who’ve been treated badly might upset you don’t touch them shove em off to be ‘dealt eith’ by someone else as the dirty so and sos ‘not coping’ (often are just no one deserves the aggression and harm people levy with being bullied and told they at them) aren’t welcome are now to be labelled the mad ones who act undesirably rather than us bullying and hurting the disabled and putting strict boundaries on them - we aren’t going to ‘bend’ to their needs’
it’s that bad and it’s that transparent. How is it legal and why do those within the community instead of standing behind and adding numbers/weight to those most surrounded by this - which would stop it because all that’s needed is numbers calling it out - instead choose to also critique and doubt the testimony of those who get the brunt? It’s ‘within group’ abandonment being encouraged too like a message of keep yourself safe and on the right side by doubting them (maybe they are exaggerating and how do they know it was intentional stuff) and undermining what you see with your eyes - the classic ‘must be more to it’ type nonsense. If someone not that ill and trapped yet sees it and feels it then we need modes for them to speak out and call it - before they are in the pushed out of society position. That's how stopping bullying and inequality is done, by all agreeing the intention doesn't matter (dignity policies don't give that leeway for a reason) and that there are lines where really someone should know what they are doing and need training if they don't.
Shouldn’t they be running and signing off these courses for bigotry - I find it astounding we are the one illness where instead of patient led to make sure inadvertent bigotry doesn’t happen being the trend (and consumer-led has been the trend in developing courses outside medicine for decades, and I mean proper insight from the start snd checkpoints all the way through) we actually have people like Sharpe and BPS trying to claim pwme should be cut out of commenting even on research at the end with fake spurious opposite of logic claims of having the conditions being ‘a conflict of interest’ vs them having financial or career interests in certain treatment or outcome areas.
If they do continue to lobby for having the voice removed from such standard inputs it would be outrageous.
So yes without regulations spelling out that teaching a bigotry course is an unacceptable option for this, astoundingly, I would agree. The shocking thing is that it has to be said.
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Almost word for word what I’ve heard Sharpe say I’m pretty sure. It’s all just vile rumour monger made up crap to wind up and play mind game politics. How on earth did he get away with that and keep a professional job nevermind a whole profession think copying such bullying words is ‘de rigeur’
when did it become funny to harm others and giggle at the pain as they desperately try and be heard and seen when their metaphorical leg is falling off and these people are trying to tell the public to pretend they can’t see it and didn’t notice or remember they saw it happen after someone hit it. I don’t think there is anything so harmful as making bystanders pretend they didn’t see what happened in front of their eyes so the harmed victims think they’ll turn round and have 25 witnesses and instead everyone is trained to pretend they are blind.
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There needs to be legislation to ensure those people are properly funded and assisted to do so.
And I also think a flaw in too many systems is that the individual isn’t named and able to be sued personally and criminally prosecuted for the consequences of their chosen actions. That’s the only thing that will stop them - whether company also named as well these discriminations need to be personally accountable in law.
Clearly a mental health bigot too. Love that people have been misled into thinking with that one that if they use the right term then their insinuation of hatred is somehow acceptable or care. That’s BS it’s clear from this they mean ‘have issues need to be dealt with’. From hilariously the person with the delusions but I guess that’s the matter for the other day even if it is what’s behind all of this - tgat so many are happy to drop logic and have warped thinking who can be indoctrinated into this.
What in earth is such a person doing anywhere near a job nevermind one like this? If these things are public the company hiring should be on the case as it says they’ve hired people who have bigoted mindsets in writing online. Just from a basic HR and corporate reputation perspective you’d think they’d have got shot (whether they behind scenes agree or disagree with that or not) ?
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it’s revelling in cruelty that last one. Yes they each need to be sued, job removed, black mark making them unemployable - which being a disability bigot and harmed should do just as you’d expect for anything else. Something has gone wrong in the funding of the follow-up process that does this tgat such people are so emboldened
just because bps people have tried to write down these bigitries into papers and articles with no proper science doesn’t make them anything other than the same bigitries - that’s what I don’t get why aren’t the medical profession saying ‘well we don’t have a racism charter under the guise of a science so when did these uneviddnced ranty manifestos that encourage bigoted cruelty become anything other than that. The idea people can relate back to saying ‘it’s ok because it’s a paradigm’ instead of the truth which is just ‘in spouting the discriminatory and cruel opinion and treatment of you encouraged by these grim people’ is proper rub your eyes stuff . How could it stand up in court as such s blah when the whole area is one of the few that chose to exempt itself from all the basics that define ifvresearch is science or fake - since when did s correlation from s manipulated sample without the condition being socially pressured on leading questions justify s manifesto? It’s still just a manifesto with no science behind it?
Sid
Senior Member (Voting Rights)
Good point. He probably also believes that MH conditions aren't real/disabling.
Merged thread
What some doctors on Reddit think about chronic fatigue syndrome in 2023
From the moderation team:
We have added a note to the opening post of this thread:
Many of the comments about people with ME/CFS on Reddit are ill informed and unkind, and may cause distress. We recommend that you consider whether the benefits from reading them outweigh the negative personal impact.
[Edited for clarity].
What some doctors on Reddit think about chronic fatigue syndrome in 2023
From the moderation team:
We have added a note to the opening post of this thread:
Many of the comments about people with ME/CFS on Reddit are ill informed and unkind, and may cause distress. We recommend that you consider whether the benefits from reading them outweigh the negative personal impact.
[Edited for clarity].
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DigitalDrifter
Senior Member (Voting Rights)
There's an old oriental saying that I think is relevant - Understanding your self without understanding your enemy only gives you half a chance at victory.
Shadrach Loom
Senior Member (Voting Rights)
Pretty sure that is Sun Tzu. Who, to be fair, was a general, writing on military strategy for a select audience of war geeks.
“Old oriental saying” is an unfortunate term, suggesting that everyone east of India grows up with aphorisms about enemies tripping off the tongue. And idiots on Reddit are not our enemies, they are merely idiots on Reddit.
“Old oriental saying” is an unfortunate term, suggesting that everyone east of India grows up with aphorisms about enemies tripping off the tongue. And idiots on Reddit are not our enemies, they are merely idiots on Reddit.
JemPD
Senior Member (Voting Rights)
I'm pretty sure that to the PwME that have the misfortune to meet these people in a professional capacity, they will feel very much like their enemies
rvallee
Senior Member (Voting Rights)
Reddit: Where did this huge trend of POTs come from?
The comments are not as despair-inducing as it can get, in fact the question is actually sincere, although weird because of the tiktok angle, but the poster says their wife has POTS so it doesn't seem to come from a bad place.
But clearly, 3 years into this, the profession is deep in denial. POTS is the lowest of hanging fruits, and even that is too much to expect.
Somehow, it seems that on the subject of social media, only tiktok exists. I guess having to do with being easier to tone police, and far easier to ignore the substance.
The comments are not as despair-inducing as it can get, in fact the question is actually sincere, although weird because of the tiktok angle, but the poster says their wife has POTS so it doesn't seem to come from a bad place.
But clearly, 3 years into this, the profession is deep in denial. POTS is the lowest of hanging fruits, and even that is too much to expect.
Somehow, it seems that on the subject of social media, only tiktok exists. I guess having to do with being easier to tone police, and far easier to ignore the substance.
I often quote POTS to show how dysfunctional medicine is. It's an illness with objective symptoms and a diagnostic test, yet nobody takes it seriously.
I think doctors use some kind of misguided instinctual understanding of the nature of illness to decide if an illness is "real" or not. They don't necessarily care about biomarkers or objective symptoms. I'll cite an anecdote that i think is relevant:
Over the years, i saw many neurologists, many of them being considered really high level. Almost all of them consider ME to be a fake illness, not to be taken seriously. They didn't care that i had POTS either. But for some reason, they took my sleep disorder (which is an ME symptom) seriously. My sleep cycle lasts 25 hours instead of 24 so i keep shifting forward infinitely, and half of my life I'm sleeping during the day. For some reason, neurologists can tell that this is a "real" symptom. From my perspective, i don't really get why. If my fatigue or cognitive impairment is not real, cant they just claim that i sleep like this because i have a poor sleep hygiene or something? Or a psychological disorder? I would think so, but for some reason they don't do that. From my POV, there is no difference between this symptom and the others (aside from it being far less disabling), but apparently for doctors there is a world of difference.
Despite having no biomarker or objective symptoms, It is a rare illness that neurologists take seriously https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=73267 they even made a drug for it!
For me, it's like the least disabling symptom i have and i really can't see why they would take this one seriously and not the others.
What I'm saying here, is that it's not as simple as ME not being taken seriously because it lacks a biomarker or objective symptoms. We should dig deeper into this and figure what is really going on. Maybe there is a way we could have a dialogue with doctors, as unlikely as that sounds. I find that the ME charities have never tried to dig deeper into this sort of thing and restricted themselves to very surface level thinking. There is never any real constructive dialogue, half of the time they are yelling "take us seriously!", the other half sponsoring quack treatments or very low level researchers. I feel that the people leading our charities do not have any real insight or understanding as to why doctors don't take us seriously (not to mention how quality research is done but that's another topic)