Invest in ME International Conference 29 May 2015, London

[SOC]

Last year North America was prohibited from buying the DVD set because actually someone put the content on You Tube. This sale of DVD represents a source of charitable funding for this organization which stretch itself really thin in prder to provide services and hold one of the most reputable scientific meeting year after year after year.

What a dirty trick on somebody's part! At the same time, it does seem pretty silly to punish the entire North American continent for one person's idiocy... and to lose all the revenue north american sales would have generated.

Let's hope everyone is more civilized this year.

 

[Kati]

What a dirty trick on somebody's part! At the same time, it does seem pretty silly to punish the entire North American continent for one person's idiocy... and to lose all the revenue north american sales would have generated.

Let's hope everyone is more civilized this year.

They only make PAL DVD format now, there used to be another format for people in North America. Does anybody know if the regular kind of computer (mine is almost 10 years old) can read PAL format?

 

[Kyla]

They only make PAL DVD format now, there used to be another format for people in North America. Does anybody know if the regular kind of computer (mine is almost 10 years old) can read PAL format?

If it is PAL you wouldn't be able to play it on a North American DVD player. Computer should be fine, as long as they haven't region coded it, in which case some extra fiddling would be involved to get your media player to recognize it.

 

[aimossy]

@Mark
Hi, sorry for the random tag. I was wondering if you might be going to the conference again this year and doing write ups? You wrote fantastic reports after the last one.

I am also wondering if anyone knows who may be tweeting from the conference this year.

 

[Sasha]

Last year North America was prohibited from buying the DVD set because actually someone put the content on You Tube.

I don't understand this either - it seems a pity to prevent the whole US from having all this inspiring stuff on DVD because of one irresponsible person! One of the strengths of the conference is the international nature of it - getting top researchers like Dr Hornig and Drs Fluge & Mella turning up. I think there's always a big US contingent and it would be good to encourage more, as well as making the conference accessible to US patients. Plus it would be an additional source of revenue, if they're making a profit on each sale.

This sale of DVD represents a source of charitable funding for this organization which stretch itself really thin in prder to provide services and hold one of the most reputable scientific meeting year after year after year.

I had thought that they didn't make a profit on these. I've been looking on their site to see where I'd read that and couldn't find anything but I found this on PR:

[Quoting IiME] We have tried to make the cost of the DVD as low as possible for those purchasing it and as accessible as possible to as many as possible by heavily subsiding its production. If we were to ever break even on the costs of the DVD then any profits would go toward funding or supporting biomedical research or educating and creating awareness of the need for biomedical research.

So maybe they've reached the point at which they're breaking even. If they're not (or if the profits are slim) I hope they might consider putting at least some of the material (with the researchers' agreement) on Youtube because it might help get them attention and good publicity and help them pull in donations for their research fund that might outweigh any forgoing of profit from the DVD sales.

@Jonathan Edwards, is there some reason that researchers would generally prefer not having their talks on Youtube? What about at least having just the keynote speech on Youtube with a link back to the DVD purchase page?

 

[Jonathan Edwards]

I don't understand this either - it seems a pity to prevent the whole US from having all this inspiring stuff on DVD because of one irresponsible person! One of the strengths of the conference is the international nature of it - getting top researchers like Dr Hornig and Drs Fluge & Mella turning up. I think there's always a big US contingent and it would be good to encourage more, as well as making the conference accessible to US patients. Plus it would be an additional source of revenue, if they're making a profit on each sale.



I had thought that they didn't make a profit on these. I've been looking on their site to see where I'd read that and couldn't find anything but I found this on PR:



So maybe they've reached the point at which they're breaking even. If they're not (or if the profits are slim) I hope they might consider putting at least some of the material (with the researchers' agreement) on Youtube because it might help get them attention and good publicity and help them pull in donations for their research fund that might outweigh any forgoing of profit from the DVD sales.

@Jonathan Edwards, is there some reason that researchers would generally prefer not having their talks on Youtube? What about at least having just the keynote speech on Youtube with a link back to the DVD purchase page?

This is not something I have been involved in I am afraid.

 

[Mark]

@Mark
Hi, sorry for the random tag. I was wondering if you might be going to the conference again this year and doing write ups? You wrote fantastic reports after the last one.

I am also wondering if anyone knows who may be tweeting from the conference this year.

Yes, we'll be tweeting from IiME again, and I'll write an article, though it'll almost certainly be a lot shorter than my previous ones! Anyone else who's going, PM me and we can meet up.

 

[aimossy]

Im sure a shorter version will still be great! Thanks @Mark

 

[Kati]

I would pay for online access to these videos. DVD's are getting obsolete now with the internet.

 

[MEMum]

Yes, we'll be tweeting from IiME again, and I'll write an article, though it'll almost certainly be a lot shorter than my previous ones! Anyone else who's going, PM me and we can meet up.

Hi Mark
I'm going, not tweeting but might be able to write up a couple of talks. Will PM you when I've worked out how.

 

[voner]

mark,

what is your Twitter handle?

 

[Sasha]

mark,

what is your Twitter handle?

https://twitter.com/aboutmecfs

 

[aimossy]

Actually it would be good to know if this is tweeted from Pheonix Rising twitter or Mark's own twitter handle.
@Mark ?

 

[Sasha]

Actually it would be good to know if this is tweeted from Pheonix Rising twitter or Mark's own twitter handle.
@Mark ?

It will be the PR one.