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

There's a lot we don't understand.

My son went from mild/moderate to bedridden/barely conscious after one sports game (although he was only that severely ill for a month). My daughter kept pushing herself physically in substantial ways, and crashing, and yet recovered after a couple of years.

I guess a precautionary approach would suggest that avoiding PEM is probably a good thing to try to do, given how many people say that activity caused a deterioration that they didn't recover from. But, the people who did the body-building sessions and crashed and went on to recover probably aren't posting on that reddit thread. I think we need to keep in mind the range of illness trajectories, and avoid sounding certain.
 
Hutan said:
I think we need to keep in mind the range of illness trajectories, and avoid sounding certain.
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For sure. There is no way to predict what’s going to happen.

But I don’t think I could ever advice anyone to not do what they can to avoid PEM. And I’d say to not take it as a guarantee that they will get better or fully recover to their baseline (whatever that is) after a crash.

It’s a weird thing to be in that kind of a limbo. You might still recover, but you also very well might not. How do you adapt?
 
Often this thread contains dismal posts describing medical abuse. This is... quite different. Just now posted in the long haulers' sub. I don't know what to say, but it made me laugh.

Just Came off a 24 Hour Cocaine and Hooker Bender

I’m 3.5 years into LC. I have good and bad days. There are times when things calm down in my body and I feel perhaps 75% recovered. There are briefer times when I feel closer to 85% and some fleeting moments feeling 90%.

I’ve had a few good days to the extent that I was good enough to hit some cocaine and got a few hookers. This is a post for motivation. I would have never thought when I first started LC that I would get to this point. I have setbacks and I push things too hard, but I’m evidence that progress can be made along a recovery trajectory.

I can't wait for the trial acronyms. REHAB (Rehabilitation through Hookers And Blow)?
 
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SNT Gatchaman said:
Often this thread contains dismal posts describing medical abuse. This is... quite different. Just now posted in the long haulers' sub. I don't know what to say, but it made me laugh.

Just Came off a 24 Hour Cocaine and Hooker Bender

I’m 3.5 years into LC. I have good and bad days. There are times when things calm down in my body and I feel perhaps 75% recovered. There are briefer times when I feel closer to 85% and some fleeting moments feeling 90%.

I’ve had a few good days to the extent that I was good enough to hit some cocaine and got a few hookers. This is a post for motivation. I would have never thought when I first started LC that I would get to this point. I have setbacks and I push things too hard, but I’m evidence that progress can be made along a recovery trajectory.

I bought some viagra but didn’t end up needing it. The coke was good and so were the girls. I’m 1 day removed from that bender and strangely don’t feel hungover.

I can't wait for the trial acronyms. REHAB (Rehabilitation through Hookers And Blow)?
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Then they’ll diagnose you with PASC
[Primary Addiction to Sex and Cocaine]
 
Pitt Is Launching a Chiropractic Program—What Happens When Pseudoscience Gets an Academic Seal of Approval?

The University of Pittsburgh, a highly respected institution in allied health and medical research, recently announced the launch of a Doctor of Chiropractic program. […] It risks legitimizing pseudoscience under respected academic brands.
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It sets a dangerous precedent. If Pitt, a flagship institution, launches a DC program without clear reform or regulatory safeguards, it opens the door for other less rigorous academic centers to follow, further blurring the line between science and pseudoscience.

This isn't about professional gatekeeping, it’s about protecting patients and ensuring that academic medicine doesn’t lend credibility to unregulated, unscientific practices. Quackery isn't just silly, it delay legitimate care and hurts patient outcomes.
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"Evidence-based chiropractor" replies in defence, quoting the proposed curriculum, implying it's fully in line with evidence-based medicine —

The curriculum includes an extensive scope of topics related to the skills, knowledge, and behaviors required in chiropractic practice. The history, scope, and nature of the contemporary practice of chiropractic will be covered in detail. Skill development in manual and manipulative procedures will be founded on the principles of biomechanics and kinesiology, integrated with the skills and knowledge of rehabilitation and exercise science. The biopsychosocial approach to pain syndromes will be stressed as the foundation for a deep understanding of the role of the chiropractic practitioner in the emerging value-based US healthcare system.
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I think @rvallee's head may explode.
 
SNT Gatchaman said:
I think @rvallee's head may explode.
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Confirmed. Some laughter. Deep sadness, too.
This isn't about professional gatekeeping, it’s about protecting patients and ensuring that academic medicine doesn’t lend credibility to unregulated, unscientific practices. Quackery isn't just silly, it delay legitimate care and hurts patient outcomes.
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Oh, buddy, you are neck-deep in it already. It's too late for small measures. I love how their criticism applies perfectly to, well, this:
The biopsychosocial approach to pain syndromes will be stressed as the foundation for a deep understanding of the role of the chiropractic practitioner in the emerging value-based US healthcare system.
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The seeds are ready for the harvest. They were custom-built to grow into enabling all the pseudosciences. Enjoy the reaper*.

* Person who reaps, right? ;)
 
Turtle said:
value-based US healthcare system
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It ties patient outcomes to the cost of achieving those outcomes.

I suspect it’s why everyone are so bothered with PROMS nowadays - it’s an easy way to «show» that you’ve achieved something.

Of course, most questionnaires are useless for that purpose, but that has never stopped them..

It also doesn’t explicitly emphasise quality, safety, ethics, etc.

I think of it as the lovechild of capitalism and medicine.
 
Seems to be an official concept: https://www.cms.gov/priorities/innovation/key-concepts/value-based-care.
Value-based care is a term that Medicare, doctors and other health care professionals sometimes use to describe health care that is designed to focus on quality of care, provider performance and the patient experience. The “value” in value-based care refers to what an individual values most.
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I don't think it has anything to do with more pseudoscience, chiropractic or otherwise, but since it's a generic nice-sounding word, people use it to mean whatever they want it to mean. How biopsychosocial: words and their meaning, why bother?
 
rvallee said:
Seems to be an official concept: https://www.cms.gov/priorities/innovation/key-concepts/value-based-care.

I don't think it has anything to do with more pseudoscience, chiropractic or otherwise, but since it's a generic nice-sounding word, people use it to mean whatever they want it to mean. How biopsychosocial: words and their meaning, why bother?
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Huh, seems like there are different definitions going around.

I was looking at something like this:
Value in health care is the measured improvement in a person’s health outcomes for the cost of achieving that improvement.
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That’s a very different definition of value compared to «what you value the most».

Defining and Implementing Value-Based Health Care: A Strategic Framework - PMC

Value in health care is the measured improvement in a person’s health outcomes for the cost of achieving that improvement. While some descriptions conflate value-based health care and cost reduction, quality improvement, or patient satisfaction, ...
pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov
 
Post today from a patient who saw one of the PACE trial members.

Story about a really bad doctors appointment

I want to share my experience I had a few months back with a certain doctor. He was an infectious disease specialist who was based in Oxford in England. My mum drove me 2 hours there, and it was a massive waste of energy. He instantly brought up my mental health issues and told me I cant have CFS and the reason I feel so tired is just because I am anxious and depressed. He only seemed interested in my mental health and had no interest of my countless ME/CFS symptoms. He told me that the only cure for CFS was graded exercise therapy and that the new NICE guidelines were "controversial". He also jokingly called me a "lazy bastard" which I didn't find funny at all. He then went on to say that I must have "lost my sense of humour". It sounds like this is a made up story even just telling it but it's literally exactly what happened. How can there be doctors, so high up in the NHS that still have these views in 2025 its insane.
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Poster continues —

His name was Dr Timothy Peto, Infectious disease specialist based in Oxford England. There’s actually an article about him on one of the ME charities website claiming he was involved in some study called PACE a while back.
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Basically he said because I have anxiety that MUST be the cause of the constant fatigue. The thing is, I used to just have anxiety and no CFS and I would skateboard for 5+ hours a day and feel great. Now I can barely get out of bed… He seemed to have no understanding that fatigue is not my only symptom
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I want to share my experience I had a few months back with a certain doctor. He was an infectious disease specialist who was based in Oxford in England. My mum drove me 2 hours there, and it was a massive waste of energy. He instantly brought up my mental health issues and told me I cant have CFS and the reason I feel so tired is just because I am anxious and depressed. He only seemed interested in my mental health and had no interest of my countless ME/CFS symptoms. He told me that the only cure for CFS was graded exercise therapy and that the new NICE guidelines were "controversial". He also jokingly called me a "lazy bastard" which I didn't find funny at all. He then went on to say that I must have "lost my sense of humour". It sounds like this is a made up story even just telling it but it's literally exactly what happened. How can there be doctors, so high up in the NHS that still have these views in 2025 its insane.
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A useful reminder to anybody who thinks we are too strident or harsh in our criticism of cruel jokers like this.

And they wonder why we hate them. Real mystery that.
 
Sean said:
A useful reminder to anybody who thinks we are too strident or harsh in our criticism of cruel jokers like this.

And they wonder why we hate them. Real mystery that.
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Well, there's also all the lying. I do not like being lied about. Not one bit. There's nothing to wonder about why we hate them, the reasons why are plentiful in their own research.

But many of them, directly or through their pals, have compared us to terrorists and other nefarious people. Which is as insane as it's ridiculous. There's the lying part of this, but also, who the fuck does anything like that? Humans, it turns out. Almost anyone can be prodded into behaving like this. The last few years have been very illuminating about this.

That's really the thing: not only do we have every reason to hate them, we should hate them even more. But if Long Covid has proven anything so far, it's that there is nothing unique, or even particular, about them. That hatred is systemic, and almost any random combination of MDs doing this work would end up producing the same garbage.

An unaccountable profession that can't handle not knowing things and prefers to lash out at those suffering from their failures is always a dangerous thing, it takes zero hindsight to understand this. And yet here we are, with the hindsight, and it makes zero difference.
 
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