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

[Wits_End]

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."?

 

[Yann04]

TW: Suicide

A post about a woman with LC in Canada who committed suicide. Says psychologisation/dismissal contributed.

 

[Chandelier]

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)

 

[Chandelier]

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.

 

[SNT Gatchaman]

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.

 

[Chandelier]

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.

 

[rvallee]

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.

 

[Utsikt]

Community update by the mod:

Spoiler: Update

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.

 

[Lou B Lou]

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 ....

 

[Sean]

I was personally attacked, called things like a cultist/moron/enemy,​

You are certainly their 'enemy'. The enemy of pseudo-science and its practitioners.

 

[SNT Gatchaman]

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.

 

[Sean]

@SNT Gatchaman

Ah, yes. I meant that to be in support of the person I was quoting. Obviously didn't work too well. Edited original comment for clarity, hopefully.

Thanks for catching that.

 

[Lisan_Al_Ghaib_87]

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

 

[JellyBabyKid]

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?

 

[Kitty]

I did remove all the stressors from my life once I was old enough for the state pension—DWP included, as they put me on 10-year review for PIP.

It made no difference to my illness.