What exactly are you feeling with the butyrate?
Im feeling things related to libido, less brain fog, better facosu and brain stability, and less anxiety that I have not notice since pre pfs. But the waves are slowly. Also I noticed after coffe that my “adrenals” seems to be working hard. In my opinion the creator of the thread should be allowed to write here, and answer some questions.
7 Likes
Yeah I agree, I feel like he was on to something.
4 Likes
To address the complaints and statements surrounding my permanent banning of @Headsup and reiterate the forum rules:
-
Although we share a common goal of promoting research into PFS, this forum is an entity separate from the PFS Foundation. Emailing the PFSF with grievances about this forum will only waste your time and theirs.
-
This is not a platform for unbridled free speech. The infrastructure of this forum is provided by the admins at a great expense of their time devoted to hosting, keeping the software up-to-date and functioning, and integrating special features into the site. This is done in addition to the time they devote communicating with the scientific and medical communities to further research into PFS and the greater “post-drug syndrome”. They maintain ultimate authority over this site and forum and, in collaboration with several moderators, created the community guidelines and delagated authority to us mods to enforce those guidelines, which comes at a great expense to our free time depending on the activity level and nature of posts on any given day.
-
Under the “Theories” section of the guideline it is stated:
Contributors should refrain from making declarative statements regarding the etiology of PFS without significant and specific evidence.
Rather than the OP immediately being banned for stating the cause of PFS and recommending a solution to other members in his very first post on this site, it appears the contrived Rube Goldberg mechanism of fictitious pathways was removed from the post and his descriptions of improvement and treatment regimen were left intact. He then (at some point in 35+ edits of the topic) surreptitiously added the deleted content back into the original post with a my theories disclaimer and asks you to “do the research” and “connect the dots” among the mutiple unevidenced declarations that follow in his “well researched” theory because he can’t be bothered with providing citations.
-
@Headsup then encouraged members to leave to follow him on instagram (recruiting members off of this site), then calls it “toxic” without explanation (pretty bad mannered considering this site hosted his theory full of unsubstantiated facts for 2 months and allowed him to skirt the rules). This is what ultimately resulted in the ban.
-
Please see the forum guidelines and consider limiting your participation here if you feel they may be too stifling or if you may become bitter about following them in the future.
-
If you have ideas about how the site could be improved, please share them in a post. Badmouthing the site by saying things like “this place sucks”, or “this place is toxic”, are meaningless beyond stating that you’re unhappy and will probably result in your post being deleted. Just be mindful that the current policy was carefully considered over time and included conflicting viewpoints. We can’t, and won’t, cater to everyone. Also be mindful that this is not a democracy, with the admins being the ultimate authority over the site.
5 Likes
Just so I understand, Headup’s well constructed theory is a no no because he didn’t correctly cite his sources, but it’s okay to author a post on the benefits of Methamphetamine.
8 Likes
A “well constructed” theory would cite sources. A “well constructed” theory would require no “connecting of dots” by definition. Let’s not kid anyone.
And yes, you could claim that you fully recovered after eating a diet of all used cat-litter for a week so long as you didn’t try to contrive some nonsense as to why.
There’s a big difference between a member sharing a subjective experience and a member stating a baseless theory objectively.
2 Likes
One of my biggest complaints about this site is the constant bickering and negativity, so I’ll end mine here.
While I don’t agree with the decision you’ve made to ban Headsup, I can say that I appreciate the work the admins do to keep this site running.
8 Likes
Out of respect to the people who maintain this site I won’t go deeper into the ban of the OP.
But atleast let us sufferrers who do believe OP is on to something, the chance to have some form of contact with OP. Now that he’s banned we can not reach him. This condition is hard enough for us already, me and others don’t want to deal with forum politics too but are only interested in finding a solution.
How can you alleviate this mods? Do you have his email?
11 Likes
The changes of the microbiome OP is referring to is the increase of Bacteroidetes phylum and Prevotellaceae family as well as the decrease of Ruminococcaceae family, Oscillospira and Lachnospira genus. (https://www.ncbi.nlm.nih.gov/m/pubmed/30265917/)
I checked, and the bacteria that are decreased post treatment (lachnospira and ruminococcacea) are in fact responsible for most of the butyrate synthesis - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5715108/
5 Likes
Yikes.
Hello,
This is a private website and adherence to the guidelines is a term of use. This policy is not up for debate, and users do not see the majority of anything the staff do, including any warning messages sent, editing actions, or the moderation action log.
Our moderators give endless effort to keep this site in existence as a privilege. As one of the administrators, I am exceptionally grateful for their commitment, the burdens they shoulder and the work they do on a number of projects. I can see @Dubya_B had previously sunk a lot of time he frankly shouldn’t have into trying to continually sieve out assertions of scientific accuracy and the edit history in this thread is enormous. This is not a theory, this is an incoherent pile of biological terms.
We are fully aware users are cognitively impaired and most have an extremely poor ability to differentiate the quality of contributions. Desperation leads a percentage of users to be extremely suggestible when it comes to perceived hope from self medication, and therefore anything with a supplement, drug or diet at the end is seen as a “theory”. This repeatedly and breathlessly happens even when someone signs up to do it with no prior membership, providing an enormous range of scientific assertions with no evidence whatsoever, and usually additionally asserting they have read the whole forum (which we can see is untrue on the server side in every instance). This has been going on for fifteen years.
This is a very serious problem, and some members are profoundly unwell. Asserting pseudoscience not only makes this poorly recognised condition look even less plausible in the eyes of outward observers, scientists and professionals, but they have caused extreme harm and preceded suicide in vulnerable patients by deliberately trying to instill confidence in alternative health suggestions or psuedoscience ideas. In his last post, the last member to take his life had commented on how much worse he had made himself with ideas received elsewhere.
Users are perfectly permitted to share what has helped them. There is a very clear instruction on how to do this in the guidelines:
Theories
As examples, instead of using definitive statements about the condition that can appear as factual claims such as “PFS is this”, “This will work every time” or “Do this and it will cure you”, consider using language such as “I believe…”, “You could try…”, or “This has worked for me”.
If a user wanting to sign up out of the blue and share piles of unsupported text that they assert is a scientifically accurate theory for this extremely serious condition and cannot possibly do that with the appropriate humility the guidelines ask, then these assorted people need to write it up in the format of a medical hypothesis with full referencing and clear relevance to the studied clinical situation (PH Survey, Irwig, 2012; Ganzer et al., 2015; Walf et al., 2018; Di Loreto et al., 2014; Rubin et al., 2018; Chiriacó et al., 2015; Fiuk et al, 2016; Than et al., 2018; Melcangi et al., 2018; Mirabal et al., 2019). They can then take it to a professor of steroid biology.
This year, due to the work of the past two years, we are shifting strategy to outreach and practical progress. I am aware some would prefer this to be a completely unmoderated site, but that is not compatible with our goals and the site will continue to operate via the stated guidelines.
Criticism of moderation policy or individual moderator decisions do not represent a matter for patient discussion here and will be removed. If a user believes it to be in error they can PM a member of staff, but the moderators judgment is wholly up to them.
Best and thank you for your understanding,
Axo
12 Likes