The intent of this post is as follows:
1) Spreading info on MW to public (always one of my core objectives)
2) Expose poor logical and critical thinking by ITSAN founder – Kelly Palace and her crew of volunteer moderators.
3) Question their authority in deciding “What is best for TSW sufferers”.
A TSW friend directed me to this link in ITSAN General Forums, titled:
A read of the entire post shows similar, repeated reports mentioned by myself and fellow MW advocates:
1) Massive skin shedding during initial period (a withdrawal period), a difficult/painful process to some, not all.
2) Increased comfort and pain tolerance after withdrawal period.
3) Strengthening of skin layer, less susceptible to breaks even when scratching.
Do pay the thread a visit for more info.
Now, on the topic of openness and ITSAN stance on no-moisturizing, I’m glad they have changed their approach from recommending moisturizing extensively in their Q&A page to one that is more nuanced. (I believe much of the changes stem from the awesome work put in by fellow MW advocates. It appears ITSAN read the blogs intently.) It appears they have started to see that people are really recovering from MW and that there could be potential iatrogenics from moisturizing. As non-committal as they are, they label it as a personal choice. Yet some posts in the above thread are pretty enlightening.
From member JT:
“I find it odd that there are so many people (me included) who swear that MW has helped them more than anything else during tsw, yet I recently received a mass email from itsan basically discouraging any talk about it. They implied that discussions (on this forum) on MW are akin to discussions about GMO’s and cancer. According to them, moisturizer has nothing to do with either the cause or cure of tsw. That fact is, nobody has completely figured out the exact science of this thing yet, and the only thing we have to go on is each others experiences.”
I don’t have to say anything much about the bolded part (other than the obvious attempt in limiting information flow), but the important point from me is that – We do not know the iatrogenics of moisturizing. (The upsides – improvement of skin, is good. The downsides – people have reported irritation, allergies. Research has shown to slow down keratin proliferation etc.) The more we do not know about the downsides, the less eager we should to recommend it to others. As for MW, there is no downside (technically yes, there is, if you decide to MW after a long period of moisturizing, you will suffer a withdrawal period). Following that, there are no iatrogenics to talk about.
Then founder KP says:
“I personally completely disagree with the 50/50 use of MW for healing. Having watched people heal for 5 years here, I would say 90 percent have used moisturizers. No, in fact, let me correct that……I personally know of zero people that have healed without Moisturizers. If someone in our network has healed without moisturizers I would like them to email me or post your success story with before and after pictures and be completely healed. And yet, ITSAN and I personally are still open to the concept.”
Firstly, I’m very interested in her definition of “healed”. I’m not sure what metric she follows. It could be 100% complete baby skin free of rash? No flares? No scratching? No skin dryness? or what, that exactly constitutes to her definition of healing that gives her the AUTHORITY to make her value judgement on the topic of moisturizing/MW. What is worse, who is she to require someone who has done MW to prove it to her, so that she can be open that her mindset may be wrong. Reeks of narcissism here.
I’m not sure if I’m healed, in fact, I can’t be bothered. All I know is that 4 months + into TSW and MW, I’m able to do things that I couldn’t do when I was constantly on moisturizers. Playing soccer, running, going out shopping, talking a walk in the sun, thinking and writing critically etc. All I know is that I suffered a hell lot when I was constantly using moisturizers (all sorts, natural/synthetic). There is a big difference in myself in knowing that NOT moisturizing helped alot. Of course, my personal experience counts for nothing, but please read the thread, read more blogs and see that there are many others who has reported the same experience as myself.
Secondly, I’d like to educate KP and her forum lackeys on the concept of : “Absence of evidence does not mean evidence of absence.” In KP limited worldview and experience, she has not seen anyone who has healed doing MW. It does not mean that there is NO ONE who has healed doing MW. An analogy will be the black swan example. Prior to the discovery of Black Swans, due to the mass observation of only white swans, people made the claim that “All swans are white and there are no black swans”. Until they found one. So, in order to solve KP IQ problem, I suggest she open her eyes, read more research, read more blogs, listen to their members in the forums (and stop banning them for a start), maybe pay a visit to Dr. Sato and the numerous children he has treated with MW techniques.
Thirdly, one reason why ITSAN and their crew see such limited information is because of their early and ongoing censorship policies. They banned members who had an opposing/alternative view that, in their questionable authority, believe that information is bad for their forum members. Example, Joey removed my vaseline post (See here); they banned Dan, who was one of the early advocates of MW and all the information he posted. I’ve also received emails from my readers showing documentary proof that their moderators removed my blog as well as a couple of other’s blog hyperlinks as they tried to share in the ITSAN forum. (I thought about disclosing them, perhaps I will in public, despite it not being constructive/valuable to my readers.)
Now, what you don’t see, you don’t know. Member SwankyButters wrote this:
“As I read it, Dr. Fukuya feels it can be helpful but it’s not a ‘this way or the highway’ type thing. I think the reason this got all weird here was the insistence from some that it was a cure all and two that Itsan was actively trying to either stop people talking about it or not presenting it as a course of action, which I have not seen at all. I’ve not see that kind of censorship.”
You have not seen because you have not been censored. What is censored is already unable to be seen, and ITSAN don’t tell the whole world on what they have removed.
Another post from JT sums up the climate and mental models (ingrained biasness) from KP and her lackeys:
“Joey and Kelly,
Here is the quote that made me think itsan was discouraging talk about MW: “We know that there are many concerns in the world like cancer, GMO foods, diets, environment, all kinds of other health issues and skin ailments but we want to try and keep posts on the topic of topical steroid addiction and withdrawal so the forum does not get loaded with posts about other things that may have little to nothing to do with the cause and cure of TSA/TSW.” it then says “The no moisture idea is one such example“.
That’s is. Don’t be mad at me or kick me off the forum. I read this and I thought it meant you didn’t want us talking about it. I’m not trying to twist your words Joey, or slam you. I didn’t even know you wrote it. I think you have been such a help to many people here and I’m NOT attacking you. I was upset because I saw a change for the better in my own condition within a week of stopping moisturizers and I though this message was being censored. I’ve been steroid free and suffering since July 4th, 2012 and nothing (other than immunosuppressants) has made such a quick change for the better for me. And I’ve read numerous blogs of other sufferers who had the exact same results as I have. Are we cured? No. Is it speeding the process? Who knows? Are we happy with the results. Yes. And guess what, we’re not selling anyone, anything! We have NOTHING to gain from this other than the satisfaction that posting our experiences may help someone else.”
I don’t need to say more on the level of openness in the forum.
I believe people who manage such health forums has a moral obligatory to firstly : “Do no harm“. I’ll expect people managing such forums to have at least some modicum of IQ and moral conscientiousness in order for them to do no harm. They also have the obligation to respect alternative views contrary to theirs, and not ban them if they don’t agree. We are not here to make friends, but to share experiences so that others can benefit through availability of information.
Do not recommend products, techniques, etc that you do not know the long-term side effects of. This include moisturizing. I’ve written many post to show why moisturizing is unnatural and bad for our bodies, one that relies heavily on feedback mechanisms and self-regulatory homeostasis mechanisms.
If a product has upsides/benefits, then its great. I’m more concerned of the downsides, the iatrogenics. We all have limited capability in understanding stuff. There is opacity. When we don’t know, better not to give advice readily.
And please, think before you write. They say people are smart until they open their mouths. It is even evidently clear how stupid they are when they start writing.