Methylisothiazolinone Isn’t Banned, But It Looks Like I Am

Banned from MI GroupI am not a big fan of Facebook.  I find the interface a bit busy and confusing, and I haven’t really worked out who can actually see stuff when I post it.  But it is a big platform so I feel obliged to got on it every now and again.  I was on it recently and a side bar suggested I should join a group called “Get Methylisothiazolinone Removed From Products!”.  It sounded interesting so I clicked on it and thought no more about it.

Some time later somebody messaged me.  This was quite a revelation in itself.  I didn’t know that Facebook had a messaging system.  But it does, so I had the fun of working out how that worked.  The person was from the group which I thought I had joined.  It turned out that she was one of the admins and she was deciding whether I should be let in or not.   The first question was to ask me why I wanted to join.  This seemed an odd thing to ask, but I said I was a cosmetic chemist and a blogger with an interest in MI.

She then asked me if I or a family member actually had a reaction to MI.  When I said I didn’t she told me that the group wasn’t suitable for me.

Well now I was interested.  What kind of group would turn down somebody with an interest in a subject because they weren’t the right kind of person.  I wondered if they had read my blog and didn’t like what I was saying.  So I asked if everybody was asked the same questions when they tried to join.   The person messaging me was evasive.  I asked the question several times, but got nowhere.

So this is all very curious.  The name of the group implies that it is running some kind of campaign.  Get Methylisothiazolinone Removed From Products! An exclamation mark and all.  It sounded like a pretty plain statement of intent.  And yet when somebody who might be expected to at the very least have some kind of knowledge of the matter shows up, they don’t want me to join.  And in fact they have a screening process to keep the wrong kind of people out.

Now as I know very little about this group apart from the name and that it has at least one officious gatekeeper, I can’t really say very much.  Are they basically just not very keen on listening to opposing viewpoints?   Or was the person I was talking to just following a standard procedure that they have adopted to keep out people who aren’t focused on what they are interested in?  Or is the group looking for people they can sell something to.  That last one would explain why the last person they would want to join would be someone who blogs about the subject.

That last explanation would be consistent with something that she said a couple of times, which was that she was happy to answer any specific questions I had about the allergy.  There are always people who look at problems as opportunities, and people with an MI allergy certainly have a problem that they would be likely to be prepared to hand over cash to help solve.  But I think that often the motivation in a support group isn’t financial but emotional.   It is quite a nice feeling to help someone out.  Seeking people out who need help and helping them, well there are worse things to do with your life.  I wonder if the people behind this group believe that they have some kind of insight that qualifies them to support people with a nasty allergy? And does that give them a warm fuzzy feeling?  In which case the last thing you want is anyone in the group who actually knows much about the subject.

But I don’t know.  If anyone has any experience of this Facebook group I’d be interested to hear about it.

28 thoughts on “Methylisothiazolinone Isn’t Banned, But It Looks Like I Am”

  1. Ah, let’s hope that their screening process keeps everybody else out too, so as little damage as possible is done to the world 😉 Never heard of this group before and would not want to join.

  2. Lol.. Colin you’ve written some great posts but this is my favourite by far. Funny how it’s the most random experiences that give us the best insight into human nature.

    1. Thanks Elise. I thought twice about even posting it as I wasn’t at all sure anyone else would be interested. So good to know you liked it.

  3. LOL Why on earth would you want to join a community whose ethos you don’t share?
    Do you show up to the golf club with tennis balls and a racquet? No.
    If people want to ban MI, then leave them to it. Start your own group if you believe otherwise.

    1. I see your point Sarah, but they didn’t say ‘we don’t like you, go away’ – they were probing to see whether or not I had a problem. In any case, given that I regard MI allergy as a problem and I would like to do something about it I don’t think it is a foregone conclusion that my ethos is in conflict with their’s.

  4. Sounds crazy to me they wouldn’t want you in the group. I would think your knowledge on the subject could help people more than the supportive ear from family and friends!

  5. I am in the group. My son has terrible eczema and maybe an MI allergy (he’s too young to be tested yet.) No one in the group has ever tried to sell me anything, although I do understand your concerns. I think that the reasons people are screened is because they don’t want people coming in and saying “MI allergy isn’t real! Go change your diet! Only eat organic! Starting taking this supplement!” They are all people who have been diagnosed or suspect an MI allergy, so they’re all working from the same vantage point. Also, the “get MI banned” must be secondary to just informing people… because I’ve been in the group for about 8 months and I think only once have I seen a post about contacting someone or signing a petition. Hope that helps!

    1. @Katie Thanks Katie, the airborne exposure problem is the one that I have learnt about since I started writing on the subject and it is the one that I am thinking about most at the moment. It’s good to hear that the group isn’t a front for scammy selling practices. My reception on trying to join it made me suspicious that it was.

  6. There are plenty of MI allergy groups to join. Aren’t you in the larger MI allergy publc group? As someone without the allergy, why would you need to be in a support group that exists for allergy sufferers?

  7. It seems that the group admin made it very clear of the group’s purpose. Why is it so important for you to be in that group? Aren’t you a member of the larger MI public group?

    1. @Kay It isn’t especially important for me to be in that group. It was just an interesting experience that I decided to pass on.

  8. Most groups are private and the admins have to let you in, unless the person running it decides it should be a public group. These are regular people and not companies, they don’t have to let you in, so many will question potential group members. You have an agenda for being pro MI according to your blogs. With that said, anyone with the allergy to a preservative that you don’t find to be threatening, is not going to want you in their group. The MI allergy is acquired and you aren’t born with it, it’s everywhere and doctors are having a hard time treating it. Good luck in your pursuit to join groups that you shouldn’t and then in turn talk badly about a group of people suffering from it and they only want to support each other. I feel sorry for you and your bruised ego.

    1. @Suzanne People can run groups in any way they wish, and I can respond to how they run that group in any way I choose. I don’t have a pro-MI agenda. I currently believe that people with allergies are best served by wide choice and clear labelling. You are quite right about allergies being acquired. Anyone can develop an allergy to anything, and given that I have been exposed to much more MI than the average member of the public I am at greater risk than most of joining the group of the population that is sensitive to it. I am not sure why my ego should be bruised but I am grateful for your sympathy.

  9. I run an MI group (not the one you are talking about here) which has a couple of thousand members all of whom have suffered or are suffering some pretty dreadful allergy issues as a result of MI.
    Several have had to give up or change their careers as a result.
    I’ve also read your blog where you describe MI as a pretty minor problem.
    So in my opinion you are either wrong, or an idiot. I suspect others might think the same.
    And do you REALLY not know how Facebook works yet?
    Go figure!

    1. @Jane If I am an idiot then there is very little I can do about it, so you’ll just have to accept my apologies. As to being wrong, well yes I may well be. I am a scientist not a politician, and if I hear something that suggests my ideas are wrong I am happy to change them. So at the moment I don’t think a ban on MI would be a good idea, but I am willing to change that if I hear something I don’t already know of if the situation changes. This applies to anything I believe. For example I currently believe that insulting people is not a good way to get them to change their minds. I’ll be sticking with that one for now.

  10. Can’t say i find this funny,

    You must not know someone who has had their life ruined by this chemical. Or had to watch them suffer thru a horrible flair and not be able go help or touch them because their skin is hypersensitive to everything. I hope you never do.

    A closed group is so that the people or family trying to help someone get thru this has a safe place to help, vent, cry, be angry about a condition that they did not even know they were being exposed too.

    Once you are sensitized to mi/mci it is for LIFE! And you can only hope family and friends care enough about you to change the products they use so you can be around them and be safe.

    Otherwise you are dealing with this all alone!

    1. @Nancy I don’t know anyone with this condition personally. I do get a steady stream of e-mails, often with photos attached, from people who have read what I have written about it. There is rarely much I can do, but from time to time I can answer a question that can help a little. It isn’t obvious to me that my lack of direct experience of the problem makes my opinion invalid, let alone offensive?

  11. I am sorry Collin, but how helpful can you be to a group that is interested to remove that dangerous neurotoxic preservative from products completely, because it hurt those members, me being one of them? Would you join cancer sufferers after writing that cancer is pretty much non existent? We need someone to speak up on our behalf, not put us down, which is what you did in your blogpost. Thanks for the help, thanks for not listening, thanks for mocking us! Really sad….

    1. @Marketa I can think of quite a few ways I might have helped that group if it is, as some people are asserting, dedicated to genuine mutual support. My experience was that it has a clickbaity name and and evasive gatekeeper. And when have I said that MI sensitivity is pretty much non existent? If I thought that why would I have written so many blog posts about it? It was not my intention to put any sufferer down or mock them in any way and I can’t see anywhere I that I have done so. If you could point out what you find offensive I am sure I can reword it.

  12. Lols gosh Collin I think the most comments you get are when you post about MI. I don’t understand why the online MI nazis attack you with such regularity. You’ve never disregarded the community, only in the past said that MI allergies are relatively rare and need to be studied more. That’s a perfectly reasonable statement to make, because it’s true.

    I was wondering why they seem to be so over represented online compared to in person but maybe because they’re rare they find each other online. In any case, a disease isn’t any excuse to be nasty. If they truely felt disregarded by you, what’s wrong with a “Collin please do not insult us. This is a terrible disease with very sad consequences and you are underestimating the gravity of our situation.” That would have garnered my respect. But the nasty comments and personal insults that misconstrue or misunderstand your article just wipes out most of the sympathy I had for them.

    All you did was write about what you felt was an odd experience, which is what a personal blog is for. It’s not your job to crusade for them. And for the MI community to attack anyone who doesn’t support and believe in them 100% is just wrong

    1. Calling people with an allergy that pretty much keeps people away from public places a bunch of nazis…..makes you worse.

  13. HI Colin, Love how this post is getting so much attention, and am – as always – a fan of approaching anything in a scientific manner.

    I don’t feel you need to apologize to @Jane at all – no need to apologize to people who do nothing but demonstrate incredible rudeness! Keep doing what you do. I think you rock!

    1. @Lise I try to not get offended when MI sufferers are rude to me – which I have had quite a lot of since I started writing about the subject. Although only a tiny number of people have this problem, and of them only a a tiny number have a serious problem, it must be a really miserable condition to experience so I try to be understanding. If venting their anger helps, I don’t begrudge them it.

  14. I am sure the people who claim to have MI allergies have or will develop other “allergies” to other chemicals, especially the ones that are hard to pronounce. I’m also sure most of them haven’t performed any kind of significant tests. Trying a cream (or two), seeing an adverse reaction and then blaming MI is not a sufficient method. Again people are being misled by their feelings and not facts.

  15. Chris – It is important not to overreact on the other side either. As someone who has a diagnosed MI allergy I can assure you it is not an overreacting to hesitate shaking hands with someone who has just spread an antibacterial lotion all over their hands. This allergy can be very difficult to navigate.
    However, Colin has consistently provided the best MI information I have ever found. It is level headed and useful. To see the attacks from so many people was hard for me to view. This is one reason I am not on Facebook and other social media. Reasoned discourse is always the best, and I applaud Colin for managing to remain civil, wry and informative.

  16. As someone who has lost their career to this chemical allergy, and knowing the cases of m.i related reactions reached epidemic proportion in the uk, I simply want to know ‘what changed’ in the pharmaceutical industry to cause such a thing. Up to 2009 I never had a problem, then I went travelling, got a chemical reaction to suntan lotion (which was thought to be ‘prickly heat’ then photo sensitivity) and now I cannot use a leave on product (moisturiser,hairspray,mascara,foundation,hair conditioner,antibacterial spray) dark hairdye or wet wipes or wash my bedding in anything containing this or Isothiazolinone. Having had severe anaphylaxis from emulsion paint last year(Isothiazolinone is in every emulsion paint in the uk except ‘baby paint’) I just want to know what combination of drugs caused me to become sensitised..was it the anti malarial drug? The yellow fever injection? The antihistamines? I ask because my best friend who I travelled with developed the allergy at the same time..and the three things aforementioned are the only common denominator. My friend has been hospitalised twice with anaphylaxis after using wetwipes, so as two average people, born in the 70’s..what on earth are they putting in our products? It’s embarrassing having to take your own bedding wherever you go and act like you’re a hypochondriac when the works cleaner goes wild with the antibacterial spray..but until you’ve experienced your nostrils blister and weep,watch as your neck swells up and your eyes swell and close up and be subjected to three months of harmful steroid treatment, you will never understand the debilitating nature of this issue. All of which appears avoidable. Kudos to anyone who can help stop this happening to someone else, it’s hell.

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