transabled.org

An international non-profit organisation for research into BIID and for self-help of BIID sufferers would be a great thing.

In the German speaking countries we have formed a loose group unter the http://www.biid-dach.org (BIID roof or BIID in D, A, and CH) which is working together with a commission of researchers in the German speaking countries.

We have managed to build up a very small web site in German and a forum in German. We are informing journalists and try to find participants for research studies. And BIID will be included in the list of rare conditions and problems (“blue list”) on the web site of http://www.nakos.de, the German national contact and support unit for the support of self-help groups.

There are research projects going on at the Universities of:
- Amsterdam, the Netherlands;
- Paris, France;
- Zurich, Switzerland*;
- Luebeck, Germany*;
- Frankfurt am Main, Germany*;
- Sydney, Australia;
- New York, USA;
- South California, USA* (on-line questionnaire: https://usccollege.qualtrics.com/SE?SID=SV_79sJrgQZQMWmXOY&SVID=Prod.)

I know that Monash University in Australia is planning a new study, and I don’t know whether the Ramachandran/McGeoch/Brang team in La Jolla (University of California at San Diego) is still conducting BIID research.

(I have taken part in the projects with the *).

The problem – which you ask about in your headline – is that only very few of us are participating in research projects. I don’t know why most refuse to do. It is easy. It is safe. It is anonymous. Researchers are nice, open-minded and understanding people. Some even have a lot of humour.

So all of you who read this, contact the researchers and take part if you can.

About the non-profit organisation: Who is willing and able to be spokesman/woman or head or president or whatever? Under his/her full real name? Or can we find somebody who lends us his/her name, a person who obviously hasn’t BIID?

I take part in all studies I learn of but I’m only one person so that doesn’t solve the problem.

You guys may well be a lot more hands on in terms of the research stuff on your website but as you say…it’s all in German. How can I take part in a study if I don’t understand German? I’ve said it before, I hate missing out on opportunities to move forward because of language barriers. New Zealanders don’t have the same opportunities to learn foreign languages like Europeans do.

Hi Sophie, indeed researchers in Germany, Austria and Switzerland tend to work with German speaking people. I think it is much easier and more exact when somebody expresses his/her feelings in his/her mother tongue than in a foreign language.

You might just contact the researchers in English and ask them what you can contribute. This should have three effects: First, they see that there is interest from abroad, and second, they might get some information just from talking with you which they hadn’t had before, and third, they might be motivated to translate at least part of their questionnaires etc. into your language to be able to include you.

Then there comes the next problem. They all don’t have the funds to pay for travels from so far.

You need researchers in New Zealand. Maybe you can contact experts for neuroscience, identity disorders etc. and ask them to do research?

Dear Sean, if you read this, too: We should make a list of ongoing research projects including information about what is done there, who can participate, whom to contact etc. and a place in the www. This information should be updated regularly and be given in more languages. It could be a reference site (RSS feed, mirror site, don’t know) from or to other sites. Can we get this done somehow – maybe at an extra page on http://biid-info.org?

Best wishes
Phil

@Phil, it would be very easy to add a page on biid-info.org. The site is a wiki, so anyone can register a (free) account and add/edit content. :)

You guys want something no rational doctor can give you.

What if you wanted to be the like guy in “Johny Got His Gun”?

What if you end up on benefits even if you didn’t plan to.

Phil…It would be good to see what your website says in English (Babelfish should die a horrible death to be honest), do you have a statistics thing set up to track your visitors? I’m only asking because I wonder how many people stumble upon your website who don’t speak German and leave not knowing what BIID is.

Oh, I have no access to the web site. Our admin is in a deep depression, and nobody else has the data to get into the site, look for statistics and change things. I can’t even add links etc.

In the long run I hope that the web site can be changed into something with a content management system where some more people can change and add information easily and where news can be published, too. Then we could also do some introductory texts in English, French, Italian etc. with links to web sites in these languages.

In the forum which is at the moment located at http://biid-dach.forums-free.com there is a department for links.

I don’t know how many people leave the sites in English because their English is not good enough or they don’t speak it at all. In Germany most people have learnt English at school, but that doesn’t mean they are able to read and write well enough.

Maybe we should dream about ONE international central web site (“Portal”) with very short, reliable information in as many languages as possible and links to all sites in all languages…

I don’t know what the reasons/circumstances are but BIID.org no longer exists. Many websites/media articles (the Frankfurt BIID conference!) still refer people to BIID.org, we could take advantage of that with an international central website.

Gah I don’t understand the links section on BIID-dach

@Alix, tell me, how is it any more irrational to provide an amputation or a spinal cord transection than it is to provide the kind of repeated cosmetic surgeries that leads to “lizard man”, or women with breasts larger than large pumpkin? As for ending on benefits, even if we don’t plan to, I don’t think it would be any worse than the loss of productivity we suffer NOW due to BIID.

@Alix: Rationality is often a matter of perspective. The implications of relativity and quantum mechanics may appear to be irrational. Yet they are supported by observation. Viewed in a different way they are indeed rational.

In order to determine whether a medical procedure is or is not rational, one first has to specify the paradigm from which one is seeing it.

Is it rational to spend millions of dollars on a single life when other lives could be saved with just a few dollars? It depends. Greatest happiness for the greatest number? Long term ecology of the planet? Personal autonomy? Survival of the fittest? Coin toss?

Chloe and Sean,
I love you, guys. You are rational and polite to the xenophobic expressions of others. Keep up the great work.