Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Support forums and netiquette

with 9 comments

I feel a lot better since I stopped posting on the FailsafeNT support forum a few months ago. Not physically, but mentally. When you are virtually housebound (in my case through preferred hermitdom), the internet provides a link to the outside world, and you can get very attached to people you have never met. I allowed FailsafeNT to take up a large part of my time and my thoughts, so when it all boiled over a while back, I was very upset.

This is going to be a very frank post. In fact it qualifies as a rant.

I don’t have a very high tolerance of stress. Being part aspie, part alien, I find people stressful full-stop.

FailsafeNT was my way of interacting with people who came from a similar perspective as me, so I only found it moderately stressful. Most of regulars on FailsafeNT are lovely and I enjoyed helping them with their diets. I made two very good friends whom I like a lot. I found demolishing various altie theories about FCIS (food chemical intolerance syndrome) fairly tiresome and I often felt frustrated that people couldn’t figure out the differing worth of various theories by themselves. But I accepted it as part of the job. However, sometimes the wrong person comes along and turns something that was only moderately stressful into something that is utterly unbearable, especially when that person is a senior WAPF member.

The thing is, some people can be over-emotional and take everything personally. Some people have never had the self-discipline or imagination to do the failsafe diet properly, despite having obvious FCIS reactions like eczema to both amines and salicylates. Some people have systems in place in their brain that do not allow them to think they have a food chemical problem, because they believe that food chemical problems are ‘unnatural’ or ’caused by vitamin deficiencies’ or ’caused by gut bacteria imbalances’. Some people ought to act on their intelligence rather than on their learned emotional responses.

People with FCIS – especially those on a very high chemical WAPF diet – can be very volatile and moody and generally act like the Anthony Colpos of this world. For some reason this seems to be particularly true of men. If you criticise something they say you can dent their ego and they will take it as a personal affront. They will start attacking everything you post on every subject. Off come the gloves and out come the politics and religion. Before you know it, you are being attacked for daring to suggest that evolution did, in fact, happen (rather an essential prerequisite in any scientific discussion of genetics), or you are being called a genetic ‘defective’ and how dare you be ‘political’ by couching genetic polymorphisms in such neutral terms as ‘polymorphisms’ when you are clearly a mutant.

Sorry, I must calm down. I seem to still be stinging.

You can win a lot of respect on a forum for being a big man, for being volatile, aggressive, patronising, and using long words in combinations that other people don’t understand, even if what you are saying doesn’t make logical sense. However, you can also make people afraid to answer you back.

You can also cause a number of people who are disgusted with the unfolding argument to quietly unsubscribe from the forum.

I don’t want to post in this kind of environment. It wastes my time, it wastes everyone else’s time.

I have decided I do not want to go through it again. For the sake of my mental and emotional health.

If you really thought the only reason I disappeared from the internet for five months last year was to renovate a house, then you don’t read the FailsafeNT forum.

I no longer want to interact with the individual(s) in question. I gave up trying to post some sense into the complete lunatic asylum that is the native-nutrition forum about a year ago for the same reason – two aggressive individuals who just became too much for me to cope with.

I don’t know why I ever bothered posting on native-nutrition in the first place. At the time I first started posting I was under the impression that WAPF was a more scientific organisation than it actually is. But it turns out that the things the general membership believe in are rather different than the things the WAPF magazine and website publish. Like flies to excrement, when faced with a choice between science and mysticism, native-nutrition members always go for the theory that smells most like BS. Law of nature.

WAPF no longer attracts scientific minds, and even the scientific minds who are there appear to be deeply religious and somewhat warped. WAPF has always leaned towards the altie, but in the early days when I got involved, WAPF spent most of their time critiquing the poor science that surrounds animal fat in the diet. This was the only reason I respected WAPF. But that isn’t WAPF anymore. WAPF is outright altie lunatic nonsense and fermented foods and GAPS diets these days (excuse me, where did Weston A. Price even mention fermented foods?).

Hence I am no longer a member, and it was becoming a contradiction for me to run a failsafe forum associated with WAPF. I’m sure I’ll elaborate on my reasons for leaving WAPF some day when I’m angry enough.

I no longer want to be a conduit for individuals with FCIS to discover WAPF. As long as Sally Fallon keeps avoiding the truth and promoting the misery of the GAPS diet to people with autism and ADHD, that will only be deeply harmful for them. The same goes for the promotion of raw milk as a cure for milk intolerance.

Meanwhile FailsafeNT has gone to seed and everyone has a crazy pet theory about the ‘real’ reason they are ill that could be demolished easily by any properly trained doctor. People who should have been told to STOP EATING AMINES are still eating amines. I feel this was inevitable. Ever since WAPF put a link to FailsafeNT on their website, a steady stream of alties have been joining the group and now there is nothing to hold them back. I await their reign of fermented cabbage and coconut milk kefir terror with an eager dread.

Sorry, am I doing that ranting thing again?

I will no longer link to any WAPF related websites. In fact, I won’t talk about them anymore.

Do I feel bullied off FailsafeNT? Hmmm.

There is a silver lining in every cloud; this particular silver lining being that I’ve been able to get on with my life. In the last few months I have become much happier and calmer, I’ve taken up fiction writing again, and I’ve almost finished the first draft of my novel. All the pressure and responsibility I felt I was under have dissolved. Instead of spending my day worrying about getting back to someone about something complicated and puzzling that they’ve posted and knowing they probably won’t like what I say, I spend my day thinking about the next scene in my novel, and it is so much more fulfilling. Partly because there are no people involved, at least, no real ones.

So for you who know who you are, here’s my last word and a beginner’s lesson in netiquette:

  • Rule 1: Remember the human. Remember you are talking to other human beings who have feelings. It is easy to forget you are talking to real people when you are online. By saying unpleasant things you could hurt them, perhaps more than you think.
  • Rule 2: Adhere to the same standards of behavior online that you follow in real life. Think before you post. Would you walk up to someone in the street and say that? Don’t be rude or aggressive, remember your manners, and don’t deceive people about your identity or condition.
  • Rule 3: Know where you are in cyberspace. Acceptable behaviour in one forum is rude in another forum. For example, don’t promote religion on a science forum. Don’t talk about chocolate puddings on a weight loss diet forum. Don’t go into a failsafe forum and call people defective and FCIS unnatural.
  • Rule 4: Respect other people’s time and bandwidth. Try not to bore other people with your rants and whines, they don’t want to spend hours of their time replying to your voluminous arguments. Don’t spend eight paragraphs saying something that could be said in one, or nitpick over every single irrelevant detail of someone’s post just because you are angry.
  • Rule 5: Make yourself look good online. Make yourself look your best, check your spelling, and make sure what you say actually makes sense and has reliable references before you post it. By the same standard, admit when you are wrong.
  • Rule 6: Share expert knowledge. If someone has a question you know the answer to – answer it, and answer fairly, not with prejudice. Don’t spend your time demolishing fundamental science just because you have a pet theory you can’t let go of.
  • Rule 7: Help keep flame wars under control. Be friendly, be polite, and smooth over differences instead of antagonising people and trying to humiliate them.
  • Rule 8: Respect other people’s privacy. Don’t pester people or come onto their forum and harass them if your attention isn’t wanted.
  • Rule 9: Don’t abuse your power. Knowing more than others doesn’t give you the right to take advantage of them. Don’t try to dazzle people with fake science and long words. It doesn’t make you look good. Instead explain concepts clearly in layman’s terms so everyone can follow the conversation.
  • Rule 10: Be forgiving of other people’s mistakes. Don’t make them look stupid or humiliate them. If it’s important, let them know politely and gently rather than trying to show them up. It doesn’t make you look good to make other people look stupid (especially if you turn out to be wrong).

Now read a longer version of the rules of netiquette.

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Written by alienrobotgirl

1 July, 2008 at 12:19 pm

Posted in Personal Diary

Tagged with ,

9 Responses

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  1. I feel really very happy for you. I’m actually sick to death of nutrition, diets, genetics, chemicals and desperately want to think about something else. And yet I just don’t stop because i’m not happy with the way I feel and so it just goes on and on. I recently changed my degree (to biochem) to take off some of my stress and stop trying to appear NT all the time. I am finding being around people (especially young girls) at university almost too unbearable.

    FailsafeNT is the only internet thing I do though so at least I don’t have the pressure you do. I try to be open minded about everything that is said because I’ve had to recognise I was wrong about a few theories several times. I need to stop writing crap about things I have discovered only to find they backfire a couple of weeks later, that is a terrible habit of mine. This is probably why I should not start a blog.

    Aww, I don’t want to loose contact, it really helps knowing there is somebody going through similar things as I do, I suppose you will keep writing your blog?

    piratehyde

    1 July, 2008 at 5:05 pm

  2. I greatly appreciate your blog. It has helped me a lot in my thinking about health. I am a member of WAPF and I am sorry that some of its members or philosophy are so contrary to what you are doing with the Failsafe work. I find that from most people or organizations with a message I get some essential truth about the world that they are trying to convey even if I do not believe all or even much of what they have to say. I believe that WAPF has done much good in promoting animal fats, small grass based producers, raw milk, and in general a less industrialized way of eating. This has important political ramifications that I approve of as well health considerations. I would rather see a world of many small producers of food than a world of a few big boys like Archer Daniels Midland even if ADM did every thing right from a health perspective.

    The information of Chris Masterjohn as well as some others of WAPF I believe to be of the highest quality and WAPF is the forum that made that possible. I think a better question to ask yourself, is would the world be better off if WAPF did not exist, even though you do not agree with some of its statements or members. To me, WAPF’s principal object is the raising of health children and to do that you do need the fat soluble activators that Weston Price talked about and a restriction on the refined carbohydrates. I view your goal as helping people with food intolerance problems, which is a different emphasis though frequently important in the raising of healthy children.

    I believe in evolution and that science is a way of learning about the world. I think that in principal everything can be explained. However not all is known yet and so the question becomes how do you make decisions on limited knowledge. Most people start off doing what they learn while they are growing up, from their family, TV, etc. When they have some health problem, then they go to the official people in charge of health problems, which are doctors and ask for help. I am in the US. Here, what that means is drug them. You never hear boo about what you eat or that your activities are important to your health and if you do, it is all a bunch of low fat nonsense. They do not know what Vitamin D3 or K2 are and they never say anything about sugar or in deed about the food intolerances that you talk about. 90% of the doctors that I have had dealings with are owned lock, stock and barrel by the pharmaceutical companies. WAPF is looking for a different way and their touchstone is traditional diets. If it was not for WAPF I would not have hunted down real butter or started making bone broths. Different people have different challeges and WAPF has expanded the non pharmaceutical range of options that help many people though not all their information will help all people.

    So I wish that you would maintain your connection with WAPF but state to people that you deal that there is a caveat in that some of WAPF’s teachings may not be good for people with special challeges. For most people WAPF is are helping to create a better world.

    Porter

    porterowen

    1 July, 2008 at 10:19 pm

  3. Good post. I have the same feelings as you regarding WAPF. Sometimes I think they are being influenced by the multi-billion dollar chemical corporations…the past couple years they have had some very fishy articles. Some of the articles they came out with want people to believe that the problem they are having is all in there head…and that is causing your second brain(you gut) problems…or along these lines…not taking into consideration that it could be food chemicals, chemicals in products(natural and unatural), plastic, or amines.

    i think you have a great blog! I don’t have any of these food chemical sensitivity problems, but i am well aware of them thanks to you! I can steer people in the right direction when they do not know what is burdening them. I have pointed alot of my friends to your blog, and they feel like they have finally found someone who really understands.

    thanks again, keep posting. You, chris, and Peter are awesome!

    tbonetroy

    2 July, 2008 at 7:02 pm

  4. Hi Elena

    Sorry you had to go through another change at uni, though I think you are so intelligent it is definitely worth you doing something more technical like biochem rather than nutrition. I think if all else fails you could try computer programming, you will definitely be surrounded by 100% geek!

    I hope I didn’t imply by omission that I was underwhelmed by anything you’ve said on FailsafeNT. Your posts are always interesting, technical, logical, informative, etc, and always add to our knowledge rather than detract. You should definitely start a blog! I am often wrong too and have to rethink things. I must have deleted over 100 blog posts from the last couple of years because they are misleading in some way. You just have to keep thinking, keep revising, keep refining, and not be ashamed of it. You wouldn’t be a scientist if you never changed your opinion on anything. 🙂

    I don’t want to lose contact either – I’ll still keep writing my blog, and when I have a bit more time I may start posting things on http://community.plantpoisonsandrottenstuff.info.

    alienrobotgirl

    6 July, 2008 at 4:06 pm

  5. Hi Porter

    I do agree that WAPF has done good work. If I did not believe that WAPF did good I never would have become a member.

    Unfortunately WAPF are actively promoting harmful treatments like GAPS/SCD for individuals who have food chemical intolerance (i.e. people with ADHD and autism), and I cannot with conscience remain with the organisation.

    I had hoped that by trying to spread the word to WAPF about food chemical intolerance, they would be able to help a number of their members who joined WAPF after realising their condition had something to do with food but didn’t quite understand the cause of their problems.

    However, despite learning about food chemical intolerance, Sally decided to go in the exact opposite direction and promote a very high chemical diet as a “cure” for these people, and it is making them very sick. I know, I’ve been there. When I was most influenced by WAPF I was on a diet virtually identical to GAPS and I have never felt worse.

    As WAPF have chosen to take this approach I feel I now have to protect the Australian failsafers who find and read my blog. They have been diagnosed by hospital doctors and are following the correct treatment for food chemical intolerance in the failsafe diet. I will not be a conduit for these people to become influenced by WAPF’s false promises and pseudoscience.

    alienrobotgirl

    7 July, 2008 at 4:52 pm

  6. Thanks tbonetroy! 🙂

    alienrobotgirl

    7 July, 2008 at 4:53 pm

  7. Hi,

    Hehe I wrote that comment up there when I was feeling rather overwhealmed from working as a dietitian in a hospital for a month. I gained a great deal of understanding about the practical aspects of dietary therapy though and the limitations of the NHS. I should write about it in my currently non-exhistant blog.

    LOL, my partner does computer science (I took your advice!). I think the maths would make me fall flat on my face.

    For now i’m trying to recover from pelvic inflammatory disease. I have no idea where I picked that up from…

    piratehyde

    8 July, 2008 at 5:49 pm

  8. porterowen mentioned Chris Masterjohn at WAPF. Here’s a passage from one of his book reviews at WAPF:

    Although the inclusion of such a large quantity of unrefined and nutritious whole food is likely to dramatically improve many people’s health, it could actually hurt the health of others. Fruits and vegetables contain chemicals called salicylates which are similar to aspirin. In some people, salicylates exert a drug-like effect that mimics an allergic reaction by causing the omega-6 fatty acid, arachidonic acid, to be converted into inflammatory chemicals called leukotrienes. These chemicals in turn cause the dilation of blood vessels, the constriction of bronchial passages and the production of mucus. Salicylate intolerance can result in asthma, hives, nasal polyps, chronic swelling and gastrointestinal symptoms. Two to four percent of outpatients attending allergy clinics, two percent of those with Crohn’s disease, seven percent of those with ulcerative colitis, and fifteen to twenty percent of those who attend ear, nose and throat clinics are salicylate intolerant.

    So at least one guy at WAPF understands that eating a high-chemical diet isn’t optimal for people with a food chemical intolerance.

    maurile

    16 July, 2008 at 6:31 pm

  9. Hi Maurile

    Who do you think educated Chris Masterjohn on the subject of food chemicals? Me.

    Chris continues to make many statements insinuating that food chemical intolerant individuals are either a) vitamin deficient or b) genetic defectives.

    I find both attitudes insulting. Especially as I know more about the subject than Chris.

    alienrobotgirl

    16 July, 2008 at 7:19 pm


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