transabled.org

dear sean,

you NEED to go there!! no question!! you as such an eloquent and differenced person, we need you to be there. it doesnt really make any sense to have this conference running without any biid-representer..so maybe there really is any sugarmum or dad out there to let this happen!? do you think dr.first wouldn’t help you out a little at least? what i can offer is: maybe i can come there by car and give you a support in ground transportations?! i do live just 5 hrs from frankfurt (by car)..so all rich people please “stand up” or “roll out” for seans trip to germany – i’s for your own sake maybe as well;-)..

I want to be a rich sugar momma, but as we know, wanting something doesn’t make it so!

My best friend is convinced we are going to hit the jackpot any day… But someone said I’ve got a better chance of being killed by a vending machine;)

This really sucks Sean!

Just like Kata, I could offer my car and help locally, I\’m not that far from Fankfurt either (although more than five hours). Besides, I\’d love to attend the conference, if it is open to general public. We NEED to have one of us speaking for us all out there.
Could you please give us some more details about the conf.?

Sean, if not the money, can you manage the spare time you\’d need for that trip?

I’d love to help if I could but I am in debt to the tune of – ehemmmm – following my last little episode of illness. I’d happily get involved at a practical level were it of any use though.
I’d go myself if it were a public event, or if one could get an invitation eg from Michael, if not as a speaker than at very least to listen and ask questions.

I agree, we NEED you to go, you may not have started out wanting to be our representative but you are the best person from our little corner of the BIID community that I can think of. I wish I could help out with finances but then I’m “Idiot Girl” when it comes to money.

Can you find a way to speak via satellite???

That may not be a bad idea. I will contact the organisers, see what’s what for that.

Conferences provide funding to or for speakers in some manner. The only way I would travel and speak for free is if the other speakers also went unfunded. Your lack of “official” standing in the field of research is more than counterbalanced by your breadth and depth of real-world knowledge of the subject.

A lot of conferences have a lot of money to pay for travel fees for speakers, but not all of them. I speak at many conferences (not BIID related) and sometimes there is funding for travel, other times there isn’t. This time, the conference doesn’t have a lot of fund behind them, unfortunately.

I appreciate your compliment Nobody :)

I hope they can arrange some kind of satellite or internet or at least telephone link for you. You are certainly the best person to be speaking for us.

Don’t you have Skype? That plus a webcam… That would work pretty well, don’cha think? Or you could, like, put ads on this site. (Google Adsense or something)

Tora, yes, I have Skype, and a webcam. However, attending by Skype for one panel discussion is not quite the same as being there. I’ve been to enough conferences to know that the scheduled talks are only a minimal part of what is happening during a conference.

As for ads, there are ads on this site, there have been for about 18 months now. They bring in barely enough money to cover my webhosting costs, and domain registration costs. Running this site is a work of love, certainly not a get rich scheme.

There are? Wow… I’ve never seen them. Apparently I’m not very observant.
I would totally give you money, but I’m broke.
I’m not being very helpful. I think I’ll just shut up now.

I think my only issue with these BIID conferences is that us wee mere mortals don’t actually get to see what happens in them. The list of topics on biid.org hardly tell us anything. It’d be nice if there were videos or something.

biid.org’s information about the two previous conferences is not particularly well organised. While “video or something” might be nice, it is our responsibility, mere mortal or not, to take it upon ourselves to read up, puzzle it out, and learn. Like it or not, because BIID is so rare and misunderstood, efforts to get the medical community to better understand it is bound to use a somewhat academic language.

I’d be interested to know how many academic conferences about other medical conditions include speakers from the ‘service user community’ for want of a better phrase. I’d be willing to bet it’s not that many.

If we’re going to be taken seriously then, like it or not, we’ll have to ‘play the game’ as far as the researchers are concerned.

Issues around end user participation in academic symposia are for another, more generalised debate.

I’m not sure what you’re saying here Cath. Are you saying that in order to be taken seriously by academia we have to butt out of conferences? If that’s the case, I respectfully beg to differ :) While I’m sure that the “service user community” tends not to participate in conferences like that, I’m also of the firm believe of “nothing about us without us”. This is a stoutly “social model” perspective, and may not be embraced by most of the medical world. Nonetheless, finding some sort of equilibrium is primordial. I believe the best balance is met by having BIID sufferers participate, that can “speak their language”.

not being clear enough – sorry! I’m not really up to speed on what is considered ‘the norm’ when it comes to medical conferences, never having attended one outside psychiatry, which does encourage service user participation, but only to pay lip service to it.

Thus I have a slightly jaded expectation that we are tolerated, but not emphatically welcomed at such events and only admitted at all where service user issues are politically sensitive. I would love to be proved wrong.

To clarify my original point – if we are going to get ourselves taken seriously – bearing in mind ultimate goals here – then we possibly need to avoid anything that can be seen as outright political activism, at least until BIID is an accepted diagnosis. If we agree that BIID as mental disorder is the way forward in order to be taken seriously, then we have to tread carefully until we are in a stronger position, so as to keep everyone focussed on first principles.
I hope that helps clarify my position! I’m tired and it is late :)

Cath (never knowingly accused of promoting the medical model of mental illness…)

Sean, I just want to correct some misinformation on the BIID conference. The actual conference is scheduled for March 6th & 7th, 2009 in Frankfurt, Germany. It is to be held at the Klinikum der Johanm Wolfgang Goethe Universitat Frankfurt am Main. I’m hoping to have get togethers for those of us that suffer from BIID on March 4th & 5th, just prior to the conference and any additional free time that is available. Sean, I am going to see if I can find some way to fund your transportation to the conference. I don’t know if I’ll be successful or not, but I will see if I can come up with something. I do need to know what it would cost for a RT airfare for you, if you could provide that information to me.

Thanks for that Chris, it’s hard to find information about the conference!

I’ll drop you an email about the requested information.

wow, thats concrete news, thank you chris. i’ll be there as well – found out, that frankfurt is just 3 hours by car from where i live :-)!! please let sean know, he can hand you out my email-adress, so you can get in touch with me directly! and sean dear, thats good news for you too, so maybe you’ll make it to europe anyway!?

Sean could you do me a favour and contact me privately about this? Cheers, Kate

Hi Sean,
A short comment after a long long time. I live only 1/2 hour from Frankfurt and wish you can attend the conference.

Wow, Sandy, it’s good to see you here again. How are you?

Wow, Claire, you remember me? Okay, I am in the middle of BIID attack, I admit, after a year of abstinence.

Well now, Michael First gave me the email address of the conference organisers and i emailed them two days ago and have heard precisely nothing back :(
So much for user participation.

Yes Sandy I remember you. :o) Sorry to hear about the BIID attack. That’s the way it seems to work. We can go away, but we always come back.