ITSAN Forums, the good and the bad.

This will be my first and last piece, reviewing the forum for its merits. I’ll leave the readers to decide what is best for them given what has happened.

As of this morning, I was banned in the forums for “Consistent confrontational posting. Breaking ITSAN forum policy and rules.”

Here is what happened:

Early I had posted a link to the dailymail UK article regarding the potential downsides of vaseline for discussion. This post was taken down very quickly, with Joey the moderator citing forum policy rules. I felt offended, but as I was new then, I had to accept their rules.

Overtime, I realised there was a bigger problem: there is blatant censorship and removal of forum posts – posts of good quality but deemed unsuitable by the forum mods. I took a look at their forum policy and found it highly inconsistent in logic and rational. I posted a sound critique on their policy in a bid to help them improve. My lengthy post was deleted soon after again based on forum policy. I felt it was important to address this censorship issue as access to information, information shared by the forum people, was hugely important for TSW sufferers. When information is unnecessarily removed, people simply don’t access them and are unable to make a proper value judgement on their decisions. Yes it was against the rules to call out on their illogical forum policy which is poorly exercised by their moderators, but this mistake is minor compared to the blatant information hiding and removal done by them.

Then I always felt a target was on my back. Every post I made, I had the fear of censorship. I felt there was no point in contributing my views. At no point in time, I have been rude to anyone personally. My posts have been constructive, I try to value add discussions. The last straw came when I posted in this thread: “Woiuld you recommend TSW to a person you know” and after replying to Kelly’s (President of ITSAN), my post was again deleted. A post that I thought was valid and open for discussion, a post pertinent to the topic. A post that is not confrontational at all.

itsan

I was subsequently banned a short while after the post was removed.

Was I furious? Yes definitely, for the meaningless censorship they have done. I’ve no idea what they are trying to protect from my harmless but constructive posts. But to think about it, perhaps this association does not contain and share the same values that I did – spreading information and creating awareness. I wrote an open email to Joey, the moderator:

“Dear Joey,

I have always respected you and ITSAN in all aspects for the work you have done. Nothing can take that away from you.

The only issue I had was the censorship of information, on your forum policy. The mistake I made was calling it out publicly, this I agree. This mistake is only minor to the amount of quality information that could have been out there, improving the quality of lives of plenty suffering our same plight. Otherwise, all of my posts are constructive and I always seek to value-add to the community.
Instead of working together to improve ITSAN more, your team of moderators have decided not to be inclusive of logical pertinent discussion. Is this the team’s fault or is this the forum policy fault, I have no idea.
I’m raised not to shut up when the house rules don’t make sense. I am raised to confront issues in a logical reasonable rational debate. I am not raised to shut down other’s opinion if they don’t suit me or if I don’t like them.
I’ve had plans to donate part of my proceeds of my book project to ITSAN, and contribute in more ways because it is the right thing to do. Give back to the organisation that has given me alot too. The ban, which is totally unnecessary, is making me think otherwise.Our goals don’t differ, they are shared – spreading awareness. This entails information being available to others, inclusive to others, and not silencing the voice and opinions of people who support your forum.
I am disappointed by your actions, because the people who are suffering are those who are unable to hear the voices of another fellow sufferer, simply because of forum policy and unnecessary censorship. And this hurts me most because our goals are the same, but you are taking them further and further away from its intended purpose.

Hope we both reflect on our actions thoroughly.”

————————————————————–

She has not replied me as of this moment.

I have spoke to a number, many has raised their concern and disappointment of ITSAN on issues related to this. I took them with a pinch of salt initially. There appears to be something really wrong with the people in charge of moderating this forum based on my incident.

—————————————————————

The good – if you need a place to share, seek comfort, complain, pour out your feelings, go to the forums. The people are generally nice and are willing to spend their time to share similar experiences.

The bad – if you need a place of knowledge, a place of sound logical debate on issues related to TSW, steer away. There are too many landmines you may step that is not to the liking of the moderators. And blatant censorship. I refer you to this blog post by another blogger, Dan, on his experience with ITSAN forum too.

—————————————————————–

As of now, my resolve for spreading awareness is even strengthened, given the lack of ability of their forum moderators in achieving this objective. Will I go back to the forums? Yes, if I am unbanned, for the purpose of helping others in the forum, which is always my intended objective. Will they unban me? I’m not sure.

My point of view has always been: information should be readily available for public consumption. Good/bad scientific and personal anecdotal evidences should be shared. The people who are reading them should take responsibility in doing their due diligence and assess the quality of the information presented, and make their own personal decisions in whether to heed the advice or not.

One word to sum up my thoughts: “Disappointed”

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10 thoughts on “ITSAN Forums, the good and the bad.

  1. Yep. A lot of people repeating mis-information. Moisturizing themselves into oblivion for months and months. I could tell you were posting some “controversial” things. hah! It is really sad though that they dont promote real discussion

    • Well, I wonder if it is their policy to do this or it is the people who are manning the forums. ITSAN had the potential to be great, perhaps the people they chose to volunteer limited their potential.

  2. The “board” makes the decisions along with Joey’s input. So, I believe Kelly is behind most of these actions more so than anyone else. Joey is a very kind down to earth and very understanding and forgiving person. She is also a very patient and tolerant person who really cares about people.

    I just read the post that you linked here and what Kelly said. I have never talked to her and really don’t know much about her except for she and her husband are real estate agents I think. Joey is an old hippie who has a lot of compassion. Kelly, I don’t know.

    Something I read in her post bothered me though. She said “no doctor knows who becomes addicted and who does not. For example, like with cocaine or opiates. Some people are addicted quickly, others are not.” Really? I must be really super smart and extremely intelligent because I know what she and all doctors don’t!

    The way one can know if a person can become addicted is by knowing the individuals likelihood to addictions. For example, if an individual smokes cigarettes you can conclude that person has a higher likelihood of being an addictive personality over one who doesn’t smoke. All a doctor needs to do is ask a few questions of the patient to figure out whether they are at risk of having an addictive type personality. Knowing an individuals background, especially childhood environment reveals a lot too. Others can become addicted quickly only because they have a higher likelihood of psychological addiction than better adjusted people do. It’s not rocket science!

    As far as physical addiction goes, I believe we all have the same propensity to become addicted physically to drugs in pretty much the same time frames, depending on various factors such as current health, body weight, age, etc.

    Now, please send me my Nobel prize for discovering what “all doctors don’t know”.

  3. Well, as a person who sees the world as it is, people who can’t accept other’s legit opinion and shut them down completely exists in the past, present and future. Government do this, institution do this, all for very specific untold reasons.

    I just hope it is a life worth living for them. I want to die as a wise man, not someone spending tons of energy living in fake emperor’s clothes.

    In fact, I’ve to thank ITSAN for banning me. My time and energy is better channeled to building more personal relationships with other bloggers as well as writing more critical ideas.

  4. Well this is easy, Dan. You’re disgruntled because you were called on your demand that you use ITSAN as your soapbox for all your conspiracy and healing theories. You believe you know the “truth” and you hide behind your claims of how menacing ITSAN is and how they censor your wisdom. The long and short of it is that you were banned because you refused to follow the rules of a private website forum. If you didn’t like the rules, you could simply have gone elsewhere, yet you had a temper tantrum, wanting ITSAN to change their rules to accommodate you. Now that you can say whatever you want why don’t you simply stick to all the ideas you have for curing this condition and abstain from trashing the organization that set you on a path of healing? Because all that grumbling is just sour grapes and nobody really cares.

    • Tracy, that is pure nonsense. I’m disgruntled because I believe itsan’s rules create an environment which unwittingly harms other people, and after trying to help itsan through financial support, and posting useful information, I was treated like a child who knew nothing. I back my information up with mostly facts.

      I didn’t want itsan to change their rules to accommodate me, I wanted itsan to change their rules to accommodate the uninformed people who fall victim to the misguided beliefs of itsan’s vets, the same way I initially did. I would have never moisturized if it hadn’t been for itsan. I would have never had the ability to speed up my tsw if I didn’t know better about the power of the mind and the placebo effect, and believed what itsan says about how “the only healer is the passage of time”.

      I was pretty much done with itsan until you made your comment. Now my blood is boiling again. People do care. You must referring to yourself and your itsan vet friends. I know you guys don’t care, but people that are new to tsw do care, and they need good information, not your self pitying BS way of supporting people and poor advice. Wake up Tracy, people are already learning a better way to heal from tsa in spite of you and your buddies.

      • As the author of this blog and befitting to my blog policy that all information should be available for readers to process, I’ve approved Tracy’s comment and decided to let the discussion of this topic continue.

        I’ve thought about not showing Tracy’s comment for the fear of inciting further negative personal accusations that may result from it. However, I’ll leave the conclusion to informed readers to decide.

        To my readers, I’ll continue to value-add information as I’ve always done, no matter if I’m banned from ITSAN or not. Let our common shared goals of raising awareness of this disease be of highest priority.

    • Tracy, yes, it’s nice to be able to say whatever I want without fear of being “banned”. Yes I did demand a public apology on the forum, only because that is where I was publicly ridiculed for my views. I didn’t demand that apology until after the new information came out from the Japanese conference, which confirmed in spades what I was saying all along about the importance of moisturizer withdrawal during tsw.

      Organization that set me on a path to healing? Give me a break! It set me on a path of using moisturizers of all kinds, to believe that nothing can speed up tsw, not to bother with diet, and just do whatever is comfortable as far as which moisturizers to use. Totally useless and potentially damaging information. I discovered that it was the wrong path only because my skin wasn’t healing after two months. It was simple logic. Open wounds don’t heal very quickly if kept moist for an extended period of time. Especially if kept moist with moisturizers containing man made skin barrier destroyers. Why is that so difficult for you to understand?

      Here is your opportunity to debunk my so called conspiracy theories, rather than to just throw more insults. Which by the way, seems to be very reminiscent of my days on the forum. I’m open minded, and I want to see and try to understand your point of view, so feel free to answer the following: Do you still believe that nothing can speed up tsw other than the passage of time? Do you believe in the placebo effect? If so, why would you advocate telling people nothing can speed up tsw? Do you still believe moisturizing during tsw is the best way to go? Are you still telling people not to waste their money and time on diets? Explain why I’m wrong in my claims of moisturizing prolonging healing and causing excessive and unneeded suffering. Do you not believe what the doctors at the recent Japanese conference and others who have done studies on MW have said? The part about moisturizer withdrawal being “essential” to successful tsw recovery? I look forward to your response.

  5. Pingback: MW info + Constructive Criticism of ITSAN Again | Say No to Topical Steroids

  6. Pingback: MW info + Constructive Criticism of ITSAN Again - Say No To Topical Steroids

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