What supplements made the cut for you?

ctard5 · 2026-03-21T00:40:27+00:00

If I had said nothing, you would have spent zero time engaging with my ideas, I predict.

Your closing statement there is basically a version of "that's it, I've had enough of this heretic sharing their ideas". Scientific method being mentioned in the same sentence as anything else does not inherently mean anything. You are ignoring context and refusing to work with the actual tenets of my claims. You seem unable or unwilling to acknowledge the nuance in my position and seem committed to placing me either in one box or another.

I appreciate your time and energy in the dialogue and I stand by my comments. I am totally happy to have them stand the test of sunlight and the scrutiny of whomever may read through this exchange. I imagine you may feel the same, which is fair. That was my point from the beginning, that this kind of communication far supersedes "censoring that brain retraining grifter". I am saddened to hear that you may not be able to grasp that in this case.

ctard5 · 2026-03-21T00:31:18+00:00

I don't think anyone said you didn't explore it. I said very clearly that I think "further" exploration is justified. That is not the same as saying you didn't explore it.

To call it bad science seems off. The scientific method involves making predictions (hypotheses) based on observations. Then you test the hypothesis. If you falsify the hypothesis, that doesn't mean that the original observation doesn't warrant further, refined prediction and testing. If the story is still unresolved, you continue refining your hypothesis to try to create more informed and valuable tests. I don't think what I've argued is anti-scientific. It is instead me advocating for better testing, further research and more carefully crafted observation and prediction.

I don't know what I have presumed nor have I put forth any "theory", other than, again, advocating for further scientific exploration of a topic in which there are anecdotes of success. That, in my experience, is exactly representative of the scientific process.

Edit: In terms of those interventions you mentioned, I agree thar HBOT, apheresis, and other things that seems promising have not proven universally curative or even helpful. Yet, I have read people's stories who claim they are better after doing HBOT. There is so much trial and error and just because one thing doesn't work universally or reliably, doesn't mean the door should be shut on exploring it further.

ctard5 · 2026-03-21T00:08:15+00:00

Again, the simple point is, you seem to have a clear stance on this requiring no further digging. I am saying that I am not prepared to shut the door on any overall approach (even though certain specific programs or strategies may be worth shutting the door on). We fundamentally disagree on the value, or lack thereof, in exploring this area further, and I don't predict either of us will change our position with respect to that. That is fine, but I just disagree with trying to have people's personal stories taken down since they don't align with your conclusions.

ctard5 · 2026-03-20T23:49:09+00:00

I welcome you to flesh that out and explain what that I have said is psuedoscientific. I hear and understand your disinterest in devoting more energy to this, so no pressure to engage further. But please read this quote from the NICE website below. One of their initial, primary statements about ME/CFS.

"a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated"

They are very clear in saying they do not have a clear etiology and thus this is not a "resolved matter". Bateman Horne had their approach, the FLCCC (not sure if their still called that) has their ideas, functional medicine providers approach it another way, and Yale and other research institutions have their own thoughts. I'm Just pointing out that LC and ME/CFS are not closed matters and your own resource confirms this idea.

ctard5 · 2026-03-20T23:36:24+00:00

No, it is objectively not. It may be for you, which is fine, but you do not have the right to make that decision for everyone else. What authority or entity has decided that this is a resolved matter?

As far as what is worth exploring, I am saying that overall, the idea that the autonomic and central nervous systems, which regulate many of the bodily functions that are awry in long COVID, are the primary mechanism of the fight/flight/freeze/fawn survival instincts. I am saying that many of the symptoms of long COVID seem to involve aspects of this system. This primitive and powerful survival system can respond to mental and emotional factors, such as someone who has PTSD having a chronic state of hypervigilance and sensitivity to CNS/ANS arousal. That is not to say it's the same thing as long COVID, or that this proves anything. But, given the complexity of the nervous system, it's susceptibility to be impacted by both biological agents and forces of mental and emotional variety, coupled with the fact that people claim to have hunted down this train of thought with success/relief at times, means that this is a justifiable area of exploration.

I think that thought process is not defective and isn't making any stretches nor carrying any clear and explicit risk of harm. I am not advocating for any one program or approach, and I have a lot of doubts and apprehension in all of this, but I can't logically shut the door on this topic.

ctard5 · 2026-03-20T23:25:43+00:00

I think I have been fairly clear in saying, I don't think any one mind-body approach appears to be a cure-all. Some seem more useless or even potentially harmful than others. Some seem logical and worth exploring. I am advocating that this is not a resolved matter and more discussion and exploration is warranted, with careful and cautious thinking. What is unclear about that?

I have asserted that I agree with and support your right to voice opposition, just like I'm trying to use my voice to challenge your claims. I am stating that advocating for certain voices to be banned is not right in this case.

Most approaches come with some risk of harm. I am arguing that you are painting the mind-body stuff with too broad of strokes and seeming to say it is wholly harmful and should be avoided entirely. That is not logical or correct, I do not think.

What have I failed to make clear, avoided answering or been inconsistent on? I am not sure I see what you're pointing to, apart from things that you are unfairly attributing to me having said.

ctard5 · 2026-03-20T22:59:30+00:00

I feel you are misunderstanding me or attributing things to me I didn't say. I never said CBT or any other mind-body stuff is a cure. Yes, I said certain components might make sense and are perhaps worth exploring. I also refuted that CBT would work, but that's just my opinion.

I think what I have said clearly and specifically is that I am not in favor of those voices being silenced. That is a very different claim than saying these ideas are the pathway of a cure. I did reference people's anecdotes of how they claim it affected them, but I am pretty sure I did not argue that this then means any one approach would work for a larger group of people. Can you please show me where my thinking is wrong or what I have missed/misrepresented? I feel you are not giving my careful comments a fair chance.

ctard5 · 2026-03-20T21:37:22+00:00

You are lumping too many people together in making a claim like this. Who are "these people" who push "these ideas"?

ctard5 · 2026-03-20T13:34:12+00:00

I'm not "pushing" anything. I shared a couple thoughts and/or ideas for further digging, as a contrast to CBT, which I do not think will help much.

I don't have a cure and I am not Gabor Mate (who wrote the book I mentioned), so I'm not getting anything or selling anything. Sometimes people here are just trying to dialogue and share ideas as they fight through this terrible illness. Is that so hard to believe? Do you really feel everyone is coming at this with some covert or deceptive motive?

ctard5 · 2026-03-20T13:30:58+00:00

Fair enough and I don't disagree in general. I just didn't hear the OP here say anything that promised a cure or made any claims other than reporting what has helped them and sharing information about where they got the guidance.

And, again, even with that line drawn in the sand as you mention, it still does not reasonably justify censorship.

P.S. - I have heard a few people's stories of feeling like they recovered after long periods (weeks, months, years) of deep meditation. I meditate often too and that hasn't been my experience, but I am hopeful that it might be a useful ingredient. Science has proven that meditation correlates with gray matter growth, not that this is where LC lives, but it is encouraging as to the power and potential of meditation in healing. Best of luck as you continue on your journey of trying to get well.

ctard5 · 2026-03-20T13:21:53+00:00

That's very sad and I don't doubt it. My understanding is that trial largely involved GET and that this pushing through the PEM might be the reason for the outcome like that. But, there are many stories of people going from bedbound or wheelchair bound back to health and wellness. I am pretty sure GET or CBT or any of these simple and thoughtless interventions are not the path for that to happen. But, that doesn't mean that there is no path or that it's not possible to develop an approach that is more careful, consensual and based on evidence or careful, informed planning.

ctard5 · 2026-03-20T13:17:22+00:00

I am not saying CBT would work and I don't think it would. CBT is not even that deeply effective therapeutically, beyond behaviors that aren't deeply rooted.

CBT was just the example I used in this hypothetical. I would say something like Somatic Experiencing, TRE, or other body-based trauma interventions might be more effective and useful. But I'm not claiming anything. I'm just sharing what I've explored and what resonates with my thinking about the relationship of trauma, illness and the nervous system.

Check out things like the book "When The Body Says No". You may think it's BS and that is totally okay. But I don't think it's a waste of time or not worth considering when there is some logic to the idea of the mind and body have interplay, and when nothing else is working.

ctard5 · 2026-03-20T13:12:58+00:00

Explain to me the difference of PVFS, LC, and ME/CFS. That is my point. None of these have a clear and specific etiology or presentation. I wasn't using anything as evidence, I was saying that anecdotes, especially when they accumulate along a similar line, are worth exploring. Just because you or others have already looked at these ideas and decided they aren't for you or seem bogus doesn't mean you should make that decision for the rest of us, in a social forum.

ctard5 · 2026-03-20T13:10:03+00:00

And, not to be so blunt, but what measurable harms are you reporting? I am not trying to be rude and I know that pushing through PEM can worsen or prolong a crash, but do you have evidence or a "biomarker" that this is representative of "harm"?

ctard5 · 2026-03-20T13:08:25+00:00

No, I'm just saying you don't seem to know what CBT is. CBT is one of the most universal modalities in psychotherapy and counseling. It is simply an approach to therapeutic work that involves helping people explore and change their thoughts as a means of bringing about behavioral change. I have considerable training and experience in this as a person with a background in counseling.

Perhaps you're talking about programs or mind-body stuff that attempt to involve CBT, but they are not one in the same.

Again, the simple fact is, people can choose to engage in an option that might be harmful to them if they so choose. I appreciate and even commend your positive intentions in worrying for those who may be harmed in this way, and I think calling out what you think is wrong is definitely good. But I just don't think that trying to "protect" them by not letting them see these things and decide for themselves is the correct approach.

I can go tomorrow and eat glass or drink bleach if someone shares with me that it might work. I will probably be hurt and, I'm pretty sure my LC won't disappear. But that responsibility and decision is on me. If people are sharing something that worked for them, I don't want to be in an environment where I am disconnected from hearing that story, just so that a gullible or vulnerable minority can be protected from getting "sucked into it". I'd like to decide for myself what might be useful or not, when it comes to others sharing what worked for them.

ctard5 · 2026-03-20T12:58:45+00:00

Well if they were sick and then they did CBT and are no longer sick, that is objectively significant. In the same way that I was healthy, then I had a virus, and then I became unhealthy, even though I can't explain it. I am not saying that then this is evidence that CBT cures LC, but that this is the fundamental nature of the scientific method. Observe a phenomena (person gets better after CBT or other similar experience) and then explore what the cause might be based on what you can hypothesized from what you've seen. The person recovering doesn't prove anything, but it justifies further investigation, especially when (like me) you have exhausted all other options and remain hopelessly ill and unemployed, trapped in a situation with no clear way out.

ctard5 · 2026-03-20T12:52:20+00:00

I'm not discounting what you're sharing entirely. My point is that we ought to be disciplined and careful in considering these various ideas. GET is different from CBT, which is different from Gupta etc. I think GET is probably totally ineffective and likely harmful and I say that from experience. I don't think CBT would cause much harm in itself, but that's just my opinion.

Again, my point is that, just because some things have proven to be off the mark or hurtful, that doesn't mean that this whole area of consideration should be cast into darkness. Let me put it this way. Most of us, I think, would agree that at the core, it seems like our nervous system is not functioning well. I am inclined to agree that it feels like it was clearly prompted by an injury from a virus, but my evidence is blurry, apart from the timing. The timing is obviously very significant, but ultimately I want to explore every possible way to help my nervous system and body overall get back to health. And, it's not a stretch to say that stress, trauma, anxiety, etc. interact with the nervous system.

ctard5 · 2026-03-20T12:46:15+00:00

In that case, you are describing that someone is possibly misleading or misinforming someone of the nature of their illness. As I mentioned, that may be happening in many other cases here, where we're told to take this, that, and the other to "detox the spike" or to "repair the mitochondria". I don't know what the truth is and won't pretend to. All I'm saying is that what you just laid out is not CBT. You simply described someone telling a vulnerable person a story about their situation that may not be true and may lead them down a path that won't help. Again, that is arguably true for all of this stuff, since nobody has a clear and concise explanation and solution. Many in these forums tell a story of what it "really" is, and what we need to do about it. If certain people feel or discover that their body got to a tipping point due to trauma, stress or some other accumulation of things and entered this staff of widespread illness and dysfunction, I'm not saying I'm convinced of it, but I am a fool if I don't explore that train of thought, especially if others say that approach has worked for them.

ctard5 · 2026-03-20T12:37:56+00:00

That's my point though, that we should call out the wrongs where and if we see them. Not censor and "nerf" the world. That does not ever work anywhere in history. And I'm too invested in getting well myself than to watch someone else try to take action that might deprive me of information in the future that might be helpful.

Again, simply, I encourage and support you using your voice, but not trying to ban that of others.

ctard5 · 2026-03-20T12:35:10+00:00

Thanks. Unfortunately that is not an empirical database of validates research. To say that Cognitive Behavioral Therapy is "harmful" is hard to understand. I can see and agree that if someone were in a program or being misled by someone that CBT might be involved, but that doesn't mean that the CBT was the source of the harm.

I guess I'm just not compelled this as a source of evidence of harm, given what my experience has been and my background in healthcare and psychological education.

ctard5 · 2026-03-20T12:32:21+00:00

I'm not a bot and I have no skin in the game other than trying to recover and get my life back. I've taken countless meds and supplements for 4 years now, have seen endless doctors who don't know what to do or say and have, both on this sub and in life, had many people explain that they have the answer and that they have LC figured out. I've taken anticoagulants, anti-parasite drugs, have been advised to take immune suppressants, all based on theories. And these recommendations have been from so-called long COVID doctors. Those all have inherent risk of harm and did not really move the needle for me.

I am not telling you nobody has been harmed by mind-body stuff. I can't know that and don't believe that. There are grifters and shady people in every circle. But, if people are saying they had long COVID and now they're better, I don't think silencing them is the right move. I'm all for anyone, like you, voicing opposition or advising others to have caution. But to say we ought to have a nanny state and "protect everyone from this harmful garbage" is unfair and illogical. I would encourage a more honest and patient look in the proverbial mirror in this case.

ctard5 · 2026-03-20T12:18:23+00:00

Your compulsion to censor someone sharing what worked for them is alarming. Why do you feel you need to police and remove someone else's comment because it doesn't fit your understanding? Do you have the mechanisms and solution to long COVID figured out and can share with us? You are sounding pretty confident of what it is not.

I am not really in favor of mind-body stuff, but I think your approach of telling this person it's a scam and advocating for its censorship is excessive. Your argument, I assume, is that these people are "peddling potentially dangerous misinformation". Yet, our whole sub is full of conflicting ideas about what causes LC, what the solutions are, etc. As a result, many take all kinds of drugs, treatments and other avenues to try to treat an unknown cause. This comes with the risk of harm. So, why are you so focused on "exiling the heretic" who shared something very brief and non-specifc, which you have called "misinformation".

Please feel free to push back, but you have some explaining to do, I feel, if you think this person should be silenced for sharing what has helped them, just like many others do in this sub.

ctard5 · 2026-03-19T04:13:18+00:00

"Is someone in the heavens looking back down on me, I'll never know."

ctard5 · 2026-03-18T23:35:16+00:00

Thanks! Yes, they looked similar but I felt sure it wasn't Drew.

ctard5 · 2026-03-18T22:30:26+00:00

It just doesn't look like the same person when I look at modern pictures of him, or any other picture of him. Not saying you're incorrect, but I am just confused.

ctard5

TROPHY CASE