If this is the doctor you are referring to then you know that he says that its likley that no-one will make a study for us because of the ethical and economic obstacles is to big.
So if you guys want to honest about our situation then be honest about scientific research will not happen in the near future. Even if we make youtube videos
Can someone transcribe that to English??
I just replied to Khera from an earlier email he sent me and asked him about the 2nd part of the genectic study…Waiting on a response…
Impeccable timing. I’m at a loss for words.
Aha ok, he means that the treatment he suggesting is impossible to do together with controlled studies, am I correct?
My doctor in Sweden tries to contact him but he hasn´t responded to his e-mails.
@Das, theological debates about miracles of mind over matter and legitimacy/illegitimacy of recovery claims are tolerated; however, attempted character assassination after putting words in my mouth will not be. I ask you again to not conflate anyone’s skepticism of recovery claims with calling them liars. The only person identified as a liar so far was the person who isn’t even a member of this forum who had enough moral character to admit to what they did.
have no idea what you are referring to in above
point i was trying to make earlier was Im just confused as to why you are so keen on discrediting recoveries…bizarre mindset
I totally agree with you about some people here. bizarre is the right word for it.
There is so much wrong with this posts…
Your point is nonsense. It is both rational to expect that some people will fake stories and people have actually admitted to it.
Yes, people recover, while “actively” doing X or Y. That does not mean X is what made them recover. Correlation is not causation. When many people recover naturally doing nothing, and most people do not recover doing X, then that one guy who recovered while doing X is likely recovering natural, too., and not because of X. There is no substance with a proven track record in treating PFS. People have tried to “learn” from recoveries for 15 years without tangible results. These recoveries are likely natural/random, and some are probably fake (see above) or scam attempts.
It’s cute that you care so much about the reputation of this forum. We are absolutely fine if people who think like you do not like our forum. This is not a place for quackery, delusions, anti-science talk, blind hope and people who cannot deal with a critical thinking and a healthy dose of skepticism. This place is also not negative towards new joiners. In fact, most new people who just came off the drug receive the positive message that they are likely to recover (naturally). But if you feel this place is too “toxic”, too “negative”, “does not contribute to a positive emission” and has a “bad reputation”, and if you don’t agree with the mission of this forum to initiate awareness of and research into this condition, you are free to leave!
That’s it from me. This is going in circles. It is clear you want to keep believing that you will find the holy grail of supplements one day and will ignore everything that goes against that, because you are afraid to face reality. We will see where you are a couple of years from now. Maybe you will be wiser.
righteo, great post, super helpful
were all screwed, recovery is impossible and any recovery is actually a scam artist who perversely enjoys attracting attention on an obscure forum of a rare condition that most people have never heard of
Lets instead turn our attention into convincing some scientists that it is worth their while, financially or otherwise, that spending their time researching a disease whose main forum has 4000 people is a good idea. Cancer and the Covid vaccine will have to wait. #delusional
to revist @greek initial question, a month later I have no idea what people think the point of this forum is
My view is that its first purpose should be a plave of support where ppl can discuss symptoms and educate each other on ways our symptoms can be managed
Trolling is a bannable offence, tolerance for it here is extremely limited. If you can’t even be bothered to properly read the posts of the people you’re replying to (then misrepresenting), this forum isn’t for you.
honestly im not trying to troll and am trying to be honest and contribute positively but I really find this place can be a poisonous den of negativity
Im gona check out of here for a few months
who knows i may have recovered in the meantime
This community’s focus should be on drawing scientific and medical attention to our condition.
There are all kinds of broscience, supplement, herbal remedy, and so on forums with plenty of talk about TTHCWP. The fact that this place could just as well be confused with Ray Peat etc is detrimental to its credibility and therefore prospects for being taken seriously. I am not saying that TTHCWP talk should be banned or that anyone should be discouraged from doing whatever they want, I’m just saying that if we want the next 15 years to be different from the last, then the community focus needs to change. That stuff has proven to not be a fix.
We need to move on. We need to change.
A whole new world of therapeutic opportunity awaits us. It just needs to be tapped. We just need to exit the comfort zone, reach out to the world, engage scientists, and get the research started.
That’s the saddest part. The technology to find out why some of us have persistent side-effects has been available for years and potential treatments may be right over the horizon. The negative comments against taking this route are as baffling as those who say a person’s mood will influence their recovery.
@eskimojoe, what I meant was that it was quite the coincidence for someone who noticed a strong nocebo/placebo effect to post about a partial recovery while we’re in the middle of this conversation. If they feel as if they are at an acceptable level, then good for them, and good for you if you recover. No sarcasm.
If thinking positively/convincingly about recovery worked for me in that same way, I would have been back to normal within the first 10 years post-drug and there have been low points in the last 10 years that I would have willed myself to death if I could.
Hi Northern_Star,
If people fake stories usually on web - would you say that the survey could be filled with fake results ?
Thank you
Some people post fake stories on the web. I think that is hard to dispute. I think only a small amount of stories on this website are probably fake, but enough to take them into consideration,when attempting treatment based on very few stories from members without track record (that’s how this whole discussion originally started).
Fake stories typically intend to get a reaction out of people, i.e. they have a weird desire for “fame” or high status in a group, they seek money via scams, they just enjoy people getting into a frenzy (trolls), or - in our case - some people want to trick people into experiments that they are not willing to do themselves.
None of these motivations are satisfied by our survey. Hence, I think the amount of fake surveys will be very small. But a small amount of fake stories won’t make a material difference in results.
Indeed, if we follow the train of thought by the mods we can’t trust anything posted here. Why should we trust the surveys then?
Well, this isn’t going well.
This feels a bit like a few people are trying to score points against the moderators, rather than doing what I’d hoped, which is having an honest debate about what is and isn’t working on the forum.
I think that the community needs to work out what it wants to be and what the likely outcomes are from continuing down the path we are already travelling is.
I’ve already laid out that I don’t think the current path is working.
I don’t think it’s negative to say that repeating the same things and hoping for a different outcome isn’t likely to help anyone.
I think it’s exceptionally positive to say “is there a better way?”
I think there is a better way, but I want people to think about it, the question really is, “is there another way?” Or even better “what other way can I think of?”
Let’s not get into arguing about why some existing projects are or aren’t as good as they can be, let’s not just double down on our current positions.
Really force yourself to work out a different way for this community to be successful that is not reliant on a piece of luck, a billionaire funding us or Joe Rogan deciding to help out. It’s a good experiment at least.
Genuinely looking forward to hearing from “your side of the aisle”!
Don’t ask me what to do, ask yourself, honestly, is this the right way to make progress? How could we do it better.
This is an opportunity to come together and make a future for ourselves that isn’t bickering on a forum forever, that isn’t watching people run experiments on themselves that either fail like they did 100 times before, or watching people take ever stronger doses of dangerous drugs and substances, until they kill themselves.
That’s what we have now. Does that work? It works if you’re Merck, you get to keep making money while the victims of your drugs argue amongst themselves and then kill themselves.
At this point, I just want people to be honest.
We have two admins right now. Axolotl and Awor. I am a moderator and so are the other staff who have posted in this topic. This topic is 100% my position on this. I don’t want to speak on anyone else’s behalf, but I am comfortable saying that a forum of people running the same failed experiments and committing suicide is not what anyone wants.
One thing that people could do to support admins and scientists would be to do absolutely anything to help. What are your skills? Please offer them up. Normally when I ask this, people say they don’t have any skills. Everyone can offer something. There are more ways to help than producing world class scientific research.
With the resources we have now it’s difficult to imagine what the milestones could be, but I refer you to my first answer, in order to get to
creating and meeting milestones, we need to stop repeating the exact same experiments on ourselves that didn’t work last time.
I don’t really understand the question.
Axo and awor have been suspiciously silent or absent the last few months it seems 