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

What about

"First-line treatment for these patients is pacing, which is the art of staying within the energy envelope in order to avoid post-exertional malaise. Repeated triggering of post-exertional malaise can and often does lead to worsened physical functioning over time. At worst, these patients end up bed-bound, unable to eat, and require enteral nutritional support, as well as 24-hour caregiver support. It's a really horrendous disease.

I'm actually writing a book on the subject and offering peer-to-peer consultation support, because most of these patients go without diagnosis or treatment. Thank you so much for your curiosity and interest in these patients. They're a fantastic group to treat once you know what you're doing."?
 
Well articulated reddit post.
A young woman in despair about the insinuation that she would seek disability as an identity as if it was a fancy pair of new shoes to show off with on social media.

Recently I've seen a few forums of medical professionals discussing the rise in younger queer people who believe they have disorders like ME/CFS, POTS, hEDS, GP, and MCAS.
The common consensus was that these individuals have taken on disability as an identity, and are unwilling to accept a different diagnosis/phycological explanation for their symptoms.

As a 19 year old masculine presenting women idk what to do about this.
Last year I was a high achieving biomed student studying to become an OT, no history of serious mental health problems.
Now (because of the symptoms I am experiencing) I am basically nothing.
Evey doctor I have seen has suggested I have some sort of mental illness/am not really sick.
The worst time, I had a doctor listen to me explain I had physical and cognitive symptoms so bad I had to DROP OUT OF SCHOOL and without any further questions or investigation told me there's nothing medically wrong with me and I need to start pushing through my pain more.
Genuinly told me I seem too emotionally invested in this situation, which was clouding my judgment. THANKFULLY I was told by a mental health professional that I don't seem like I have any mental health conditions, only deppresion form my situation (although I've seen doctors say mental health professionals are unreliable yes-mans).

When I go to appointments try to present less queer and bring up the "respectable" life I had before becoming sick.
I try to bring up I am not shopping for a specific diagnosis, just want to be well enough to keep going to school/working/living alone.
It's just fucking crazy to me I have to deal with blatant homophobia and sexism while I am ill. It has COMPLETELY changed my perception of the healthcare system.

TLDR: Doctors don't blame womens health issues on anxiety challenge (impossible)
 
Beautiful post on reddit:

The parts that no one wants to see​

When you've become the parts that no one wants to see, when your very existence reminds others of their own fragility, when your lack of strength and productivity tickles the fear that one day their bodies too will decay, one day we all will die,

they will need to look away.

But you know what? It's not because dying is ugly. It's not because your body, too thin one day, too bloated another, is truly the root of their discomfort.

It's because so many in our western culture do pretty much everything we can to avoid facing impermanence and the fact that our lives will come to an end.

The parts that no one wants to see, need to stay hidden from reality, so people can continue to believe they're in control.

I sympathise deeply.

And still, it's so valuable to be seen.

We weren't designed for isolation.
 


According to them, pacing is a “self-management program,” and if I am able to carry it out myself, then I do not require any care services.

Because I would once again have to explain ME/CFS from scratch to someone who has no idea what it actually involves, including the fact that “training” is often not appropriate. So it gets labelled as “refusal of therapy.”

You were denied an electric wheelchair because you had cognitive improvement? Do they expect you to walk with your mind??

I wasn't specific enough about how often I have a crash. For one question I mentioned that all my symptoms were worse in winter and when the weather was bad, so my official denial letter said they couldn't help me because "they can't control the weather."

I was told I couldn't be disabled because I have a degree.... which I got before I became unwell.

It reminds me of how I've been told by like 3 different medical professionals that I couldn't possibly have mental health issues or be autistic because I'm in a long term relationship

Different person:
I "don't have brain fog" because I have a degree... which I earned nearly 3 decades ago.

Not me but a close friend, she got denied disability because she could still spontaneously recover.

Haha yeah, my benefits are also always limited to 12 months because apparently this illness is 'new and unknown' and it might just be gone next year. Sure.

I apparently "looked well", was "a healthy, average weight" and was "well presented" in my PIP interview.

Denied benefits because my medical records stated I was “casually dressed” for my doctor’s appointment.

-You're under 65

-Your countertops aren't sticky

It's not on the list. As in, there is a literal list of diagnoses that determine if and how much you get paid for your disability. Actual impact on you is irrelevant.

So exactly zero people in my country get disability benefits for ME/CFS.

"ME/CFS is not classed as a disability in New Zealand."

That I could work as a programmer because I could sit. Nevermind that I couldn't sit for a full day. Or that my mind wouldn't function for more than an hour. And I wasn't capable of doing what my job required. They essentially claimed that some company would pay me to sit in a chair.

Since my job was sedentary the only requirement for being able to work full time is apparently that I am able to sit in a chair some of the time.
 
From this r/cfs post.
The moderator on r/cfsrecovery had a crash out.

[WARNING] Banned from r/cfsrecovery and attacked after questioning mod's theory​

I want to share an experience I had in r/cfsrecovery because I think it raises a serious issue about disinformation, abusive moderation, and the use of AI-generated content to promote questionable recovery narratives in ME/CFS spaces.

A moderator/OP posted GPT-generated commentary about CFS, the unconscious mind, placebo, and recovery, labeling it as “Research” / serious commentary. I asked a narrow question: could they provide the original prompt used to generate the GPT output?

That was my entire point. When AI-generated text is posted as research or serious health commentary, the prompt matters. A neutral exploratory prompt and a prompt asking GPT to persuasively defend a pre-existing theory can produce very different outputs. Without the prompt, readers cannot evaluate how the answer was shaped.

Instead of providing the prompt, I was personally attacked, called things like a cultist/moron/enemy, compared morally to a murderer, banned, and then muted from modmail after asking whether requesting the prompt violated the subreddit rules.

Here is the conversation:
https://www.reddit.com/r/cfsrecovery/comments/1udmzbc/comment/otf77m1/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

The mod since edited some of his replies to remove the more severe attacks (that I was 'worse than a murderer' for example). So I'm attaching screenshots of the conversation as it originally appeared. I've also opened a complaint for harrassement / abuse of power and shared the screenshots.

This is especially concerning given that this all transpired in a supposed recovey space for a serious chronic illness.

**Update**: the mod went back and deleted his responses after the complaint/post, but I captured screenshots beforehand, which I am uploading here.

The screenshots of the conversation as text:

User:
This reads like GPT was given a thesis and asked to produce the most persuasive, sophisticated version of it.
Please post the original prompt along with the output, otherwise this is useless.
Mod:
No, it's actually as clear as possible about the logical chain it follows. You need only read it. I imagine you
did so and were left with nothing substantive to contribute.
My original post and thesis is here:

User:
No need to attack me - I'm just asking for transparency. Could you just post the original prompt please?
Mod:
This reads like GPT was given a thesis and asked to produce the most persuasive, sophisticated version of it.

That's not at attack?

Again, that is incorrect - numerous studies have documented pathophysiological abnormalities and potential biomarkers in ME/CFS. Even if I'm generous and allow that
they still need more validation, that is very far from "no evidence at all".
Also, ME/CFS is not classified as a functional somatic disorder and anecdotal evidence that someone "realized that they weren't ill" or "something in their head clicked" isnt
enough to support that claim.
It's interesting that you reject documented illness pathology yet accept self-described "rare" evidence of recovery based on someone "realizing they're not ill". I think I'd
reconsider your evaluation framework a bit.
Those are your words, so you're probably an r/cfs cultist. Why not just admit it?

You believe in a model of the illness that (1) has remained unproven for decades, (2) has helped no one recover, (3) has extinguished hope for many, and (4) has probably killed
thousands of people via despair/suicide.

People like you are literally the problem. In my eyes, you have about the same moral standing as a murderer.

You know I'm issuing permanent bans for espousing r/cfs nonsense right? Be careful what you comment in this sub.
User:
The model I believe in is simply the one best supported by empirical evidence.
I'm also open to stress reduction and nervous-system regulation playing a meaningful role for some people.
That does not strike me as dogmatic or cultish.

I'm not asking in bad faith. I'm asking because without the prompt, readers cannot evaluate whether this was a neutral analysis or a generated argument built around your
prior position.

Threatening to permanently ban someone for asking for the source context of an Al-
generated post feels less like open discussion and more like intimidation. Calling people "cultists" or comparing them to murderers because they disagree with your illness model is also not conducive to a recovery-oriented space.

Is that really the tone and standard of evidence this subreddit wants to encourage?

Mod:
You clearly haven't read the stickied posts in this very sub.

I have and always will have a zero tolerance policy for people who believe in the shit that infests r/cfs. I strongly believe that forum is responsible for a minor genocide. It stole many years of my own life because I made the mistake of believing them.

I will absolutely not allow their bilge to spill over into this sub. I will ban as many people as it takes to prevent that from happening. It is the one founding principle of this forum that is utterly non-negotiable.

I think you answered your own question. It's due to the way it's presented as a cure-all, and 'all in your head", which is great for marketing of high-cost, over-promising recovery programs, but not grounded in reality.

Therefore you see a lot of backlash to these approaches. I have no doubt that stress reduction and mind body work have a net positive effect for sufferers of chronic illnesses but I don't think that there's stong evidence that these techniques alone are enough to reverse the biological changes induced by the initial insult in all cases, whether that be viral or otherwise.

Your words again. You are running around parroting r/cfs garbage.

Do you know why I have a problem with this? This nonsense is directly contradicted by a model of CFS as rooted in the unconscious mind. It is exactly fools like you who
are stifling the discourse and preventing a correct description of CFS from emerging.
And fools like you have been doing this for decades.

The easiest way to explain why CFS has not yet been cured is that morons like yourself are running around by the hundreds and thousands and telling people not
to discuss the ONE recovery approach that could possibly work.

You are the enemy.

And then you came here and pretended to innocently question the contents of this
post.

You have already said the only relevant thing you have to say: you, a person who buys into cultist notions of CFS and who spreads them around like the virus that they are, have no substantive counterargument to the above. That's the entire extent of your utility in this discussion. Goodbye.
 
Do you know why I have a problem with this? This nonsense is directly contradicted by a model of CFS as rooted in the unconscious mind.
Sometimes I mention how typical arguments for mind-body stuff basically amount to "the model is correct because the model says so", but rarely do people just come out and say it almost verbatim. A model is always correct according to itself, what more evidence could we possibly demand?
The easiest way to explain why CFS has not yet been cured is that morons like yourself are running around by the hundreds and thousands and telling people not
to discuss the ONE recovery approach that could possibly work.
Ah, damn us, we are such monsters, the answer is right there but we keep brutalizing people into not doing the simple cure that no one can talk about (TM). We sabotaged every single one of the thousands of studies and trials that have failed to show this magical mind cure, and all the clinics that keep boasting about their many achievements, for which they sadly don't have any reliable, independent, verification, but still, they must, MUST, be true.

This would be problematic enough in itself if it wasn't what many of the thought leaders of the ideology have been saying for decades. I guess we must be more powerful than the Illuminati, the lizard people who secretly control the world and, I don't know, Opus Dei, combined.

It's the only plausible explanation. How could we possibly otherwise have achieved this? We clearly have dark magic working for us.
 
Community update by the mod:
Community Update

As some of you may be aware, there was an attempt at brigading from r/cfs over the past 24 hours.

u/[j\_spru](https://www.reddit.com/user/j_spru/) made certain intentionally provocative comments that were intellectually dishonest, after being tagged in the comments of a post I created by u/[little\_half\_pint](https://www.reddit.com/user/little_half_pint/).

After reviewing u/j_spru's comment history, coupled with the comments that were made here, I concluded that this person was acting in bad faith and in violation of Rule #1. As a reminder, Rule #1 of this sub states the following:

>Any attempt to suggest recovery from CFS is not possible or to attack people for discussing a particular recovery strategy is subject to removal and a possible ban.

u/j_spru had a comment history that made it clear they were actively opposed to mind-body notions of CFS healing. As such, I issued a ban of that user and of u/little_half_pint.

They then went to r/cfs and complained about it, naming r/cfsrecovery and attacking myself, directing people from r/cfs to this sub.

Aside from entirely validating my views of those users and their intentions, this forced me to be re-exposed to the horrific cesspool that is r/cfs.

And I became angry.

10+ years since I first encountered that sub, it seems little changed. People routinely and actively despairing and contemplating suicide, unmoderated. Mods censoring conversations about anything related to mind-body healing. No progress. No hope.

But worst of all, I saw people who had newly developed CFS coming to them for help.

And the sheer magnitude of that tragedy left me distressed. It probably reactivated some of my own trauma about that sub, how many years of my life were stolen because I believed what was said there, and how very nearly I myself arrived at suicidal despair because of it.

There's no doubt that I was provoked by some brigading members of r/cfs and reacted poorly. That was certainly their intention. And, for that, I apologize. My emotions on the subject of CFS recovery, given the journey I have endured, are complex.

Some of you may also be aware that there's been an influx lately here of people who are opposed to mind-body notions of healing. This has contributed to my angst.

I started this sub to be a place that could be safe from the censorship imposed by r/cfs on that very subject, because I and many others have benefitted enormously from recovery approaches oriented towards the nervous system. I have absolute conviction that, in the broad arc of history, r/cfs will be seen as an evil place that perpetrated great and unimaginable harm by stifling that discourse.

But that day has not arrived yet. Right now, these very people exist and are, for whatever reason, determined that NO ONE should have the opportunity to consider certain methods for healing from CFS that they deem inappropriate. Forget that the evidence from people who actually have recovered from CFS points almost uniformly in that direction.

So, let me clear about what r/cfsrecovery is. This is a place where you can safely discuss any method for healing that is not dangerous or illegal (Rule #3). You can find lots of potential approaches being discussed in the history of this sub. For example and most recently, "Antivirals and anti inflammatory medication helped me a lot", on the front page.

So long as Rule #3 is followed, no such conversation will ever be removed.

But, in the interest of preserving the founding impetus of this sub, I will be enforcing Rule #1 and I will do so especially against the people from r/cfs who would see this place torn down.

The barbarians are at the gate. And it is ultimately up to the members of this community to police it and ensure that mind-body healing remains a topic that can be openly and safely discussed here. The stakes are, in my view, literal lives that might be saved.

If this is something you can't find yourself in agreement with, then I would ask you to please leave this community and let the people who are interested in recovery and in mind-body healing continue to discuss it in peace.

To the rest, I will continue to fight on your behalf, so long as I can.
 
Wow - so many pwme/lc now falling for the mind-body shpeel .... endless pwme repeating "we are stuck in a flight or fight loop" .... "I'm calming my nervous system" ... again and again, so many don't even think to question the validity of those statements ....

And also worrying increasing hostility towards informed, astute pwme who criticise the braintraining/mindbody/NLP commercial courses/programs/ideology .... stoked by the likes of Alan Levinovitz with his hackneyed sensationalist article ... hardly original.

I'm an old timer - I've seen so many alternative therapy trends/fads come and go .... and go they do, but only when a new shiny reframed/renamed version gets sufficiently hyped and publicised to become the new 'cure all'.

Hopium is one helluva drug ....
 
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I think it was the moderator that called the user (who was quite reasonably asking for clarification about the AI prompt) a "cultist/moron/enemy".

As in we here would also be labelled as such. At any rate the posts seem to have been removed on both subreddits. A prior recent post describes that moderator's understanding of the disease.

 
I think it was the moderator that called the user (who was quite reasonably asking for clarification about the AI prompt) a "cultist/moron/enemy".

As in we here would also be labelled as such. At any rate the posts seem to have been removed on both subreddits. A prior recent post describes that moderator's understanding of the disease.
"magnus opus on the subject" So that's a really serious case, now I am more excited for part 2 & 3 of his "work" to come out than I was for Dune Part 2
 
I removed practically all major stressors from my life (seriously; I'm actually quite lucky and managed to construct a happy life for myself in spite of CFS)

I am always fascinated by the way outcomes are described.

I am hoping for 100% recovered, or variations on a theme - I'll take 80% at this point.

But it seems like recovery always needs to be redefined in some way.

I removed practically all major stressors from my life

Given the existence of and my unfortunate need to rely on DWP and it's endless, relentless and random reviews, the increasingly hostile environment in the world, in many and various ways, and quite liking interactions with other humans (notoriously stressful, even the good ones), I don't see how this is feasibly possible, or the same as fully recovered.

It's making major life changes and adaptations and improving somewhat, which is not the same thing, surely?
 


I work in interventional pain medicine, and I have a situation that pops up frequently: patients who have a diagnosis of fibromyalgia, for example, that ask for disability parking paperwork to be completed by myself or my coworkers. The issue is, the patient doesn’t have a debilitating physical issue/diagnosis, but severe pain.

A DO replies

I tell them that a pillar of the treatment for fibromyalgia, chronic fatigue, chronic low back pain without complications, etc, is graduated exercise program for which I often recommend walking in a parking lot as a first step that can be incorporated into daily life without a gym, equipment, etc. I tell them in my experience people who can’t do that get worse and I think they are medically clear for the challenge. I tell them it’s a good clinical sign that I think they are capable. I tell them I would make the same recommendation for my family. I tell them I understand their frustration and it’s fair if we have a difference in opinion.

A "Med Faculty" replies
I’m not understanding why, unless the restrictions on this are that narrow in your state you don’t simply allow it. severe pain is debilitating, and chronic pain even more so.
there are temp tags that you can give and reevaluate later. Where I live, if you have to stop and recover after 200 ft, you’re disabled.

An MD replies

I am married to one, she has a permit in her car, used to feel ashamed, now I just enjoy not having to worry about parking but yes I would not do it unless it is legit

A nurse replies

I've found that handicapped parking placards can actually increase activity. There's not the "I shouldn't go shopping because what if I can't get back to my car" fear that often keeps people at home.
 
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I work in interventional pain medicine, and I have a situation that pops up frequently: patients who have a diagnosis of fibromyalgia, for example, that ask for disability parking paperwork to be completed by myself or my coworkers. The issue is, the patient doesn’t have a debilitating physical issue/diagnosis, but severe pain.

A DO replies



A "Med Faculty" replies


An MD replies



A nurse replies
astounding reading through those.

By the distorted thinking, and clearly problematic oversight of their area giving them room to snatch or think they have power they shouldn't have, then people who have fibro but eg work in a university should be perfectly allowed to shout and and get sacked them for thinking 'proven' is what is in the literature when it is a study full of bias which means propaganda.

And sadly they are therefore by doing their job in the way they are (and 'interventional pain 'medicine'' sounds dodgy too) have chosen to instead of doing a job that is desperately needed where someone is competent to understand different types of pain and actually look at the results of what helps, is instead a sing-songer ruining lives by 'belieiving what they want to believe cos it would make them healers innit, if only it weren't coerced BS and therefore makes what they do rather sinister if they are going around saying that'.

CLaiming to be deluded cos 'I believe' isn't an excuse for keeping your license, more a reason why people should keep an eye on you whatever area you end up moving into. Because callousness of choosing not to care or hear if what you do actually harms, because the sales pitch you just made up cos that's what you'd like to think as it makes you money/popular/secondary benefits ain't OK and certainly isn't the real world. But I guess some people will pay you for doing bad. As long as you don't make it overt that's why they and you are doing it.

Because somehow we are supposed to all pretend that it's incompetence or callousness rather than needing a bit of both. That's the kind of personality research that genuinely is robust. Because you know we can all test it. ANd its consistent. Once you've been told what you do and like to do might harm do you choose to check (without coercion like 'I didn't harm you did I' to someone who is vulnerable to a power you have over them) or do you do all you can to further victimise those who might have a point - cos that takes a choice to be both doesn't it?

I'm glad the nurse at the end called them out that even their nasty pretence of it just being 'tough love' aka behavioural psychology (which I note isn't mental health just because you've got the word psych in it, but describes coercion) for its stupididity in it not even achieving what they claim it would and merely trapping people in their homes where providing people with a safety net means they can 'try' without getting stranded.

How chosen thick do you have to be happy to sound like in order to pretend it isn't just bullying when you try and pretend 'going to the gym' if it did help has anything to do with whether someone can have a permit that means if that backfires and leaves them exhausted and having a bad day at least they can get to and from their work car park or kids nursery?

And what does a long-term condition to do with pain and exhaustion and more have to do with someone who had heart surgery part-time and what some surgeon (isn't that specialty known for 'characters') replied to someone that they gave no details about? HOw muddled thinking or trying to straw man can someone be in what they are allowed to talk about in a profession if they will write that type of thing down?
 
At least they are flagging their incompetence. What is pain if not a physical issue? The dualism is showing..
It's worrying isn't it what they've been brainwashed into believing. Some strange logic I can just about visualise they've been conned into (or happily chosen for their own benefit) believing of unless the pain is eg caused by the bone-on-bone grinding (which they can see the damage on an MRI but won't have done any studies watching it in action even as a snapshot, so forget even that is based on inference that 'bone being ground down more' + more pain means that is what is causing the pain not that they are just concurrent) then it's what 'just an abstract thing they can't see'.

And if it is abstract then ergo, just based on nothing, it 'gets better if you carry on regardless' even if those experiencing it do not report that, and become more debilitated.

These things seem to give away that the disability bigotry comes first and then the choosing to be undiscerning and ignorant regarding science comes second as a choice to back that up. ie the no null hypothesis is because they have an attitude of wanting to believe someone with whatever 'has no cure' so who cares whether the pain is made more debilitating by doing x, y, z in their mind they think it is 'just an excuse not to do'.

Except when they themselves have a migraine or a frozen shoulder (or both would be getting a tiny bit closer to what those they are judging are perhaps describing, and yet they a choosing to have no respect for 'doing what they can every day pushing through all of these') are they operating heavy machinery well and would they want to be on a bus where the driver has one but takes that same principal.

They aren't even noticing that those people aren't even asking to 'not drive the bus' just eg have a permit so they've something left to get home after they do push through to do their job (so they can keep the show on the road and hold down their job etc). They need to be taught that these are people who do their job with flu and a broken leg everyday for 1,000 days in a row so what's their anaology of that one time they worked for 3 days with a cold or a sore arm (and probably had the odd thing they said 'I can't do that today, could you pass that x to me' or I'm going for a break to take an aspirin that those chronic don't have the liberty of when its not very short term) either being in work or not got to offer to someone who has multiple times day after day without a break for so many times longer and is just trying to come up with a plan to be efficient and work out how you get more done with less etc.



And they've no proof it doesn't cause permanent damage or disability and don't believe people when they turn up with those consequences from what they do?

Which is an utter dislocation from being scientific or medicine in any way if you decide to remove the observation bit and replace it with pure bias ie bigotry. It is so worrying when you see the patterns of thinking so happily laid out as if they don't realise it isn't logic.

It reminds me of the episode in the good wife where they got some trainer in to make all the employees 'experience what it was like to be old' because an accusation of ageism had been made, and they had to put corn in their shoes and wear funny glasses etc. This is like that person suggesting if said old person/bunch of employees just walked more on the corn magically their body would get used to it and it would have good effects on their feet over the years level logic. And scarily too many people think like that when there aren't others around them brave enough to pull them up.

And you only have a chance of 'seeing something' if you don't close your eyes to it and have/develop the right equipment, hence why most people get taught the history of science/medicine/whatever where things like the discovery of the microscope are there not to pass the test but to provide a level of thinking that is supposed to make someone qualified as a professional because they think critically which means realising the basic stuff they are taught to do day to day isn't 'knowing everything' (like 'before the microscope and after' and being able to read the literature related to why and how it was developed and what it changed in what they thought had been 'knowledge') rather than just a vocational assumer that what they churn out=good 'cos I got a badge, see'.

Which is about being able to 'read' papers, but I'm not sure that term of 'read' (which means understanding if something is propaganda because it has warped research design so is just bais) in the academic sense vs literacy being understand what it says but taking that literally without going to the methods section and understanding how you need to read it is 'being got' as a distinction. And the context you are supposed to develop by 'reading a literature' in that way. So it is all talking at cross-purposes due to the ambiguity in all these terms.
 
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