transabled.org

Sean, sadly, I don’t think they did a thorough workup of me when I was there. I got the impression Dr. Ramachandran might have wanted to do a scan or two, but didn’t get the chance due to time constraints. I gave them a copy of my MRI, but it probably won’t do them much good, the resolution wasn’t high enough. One of the things they are surveying is density.

I get the impression that by disregarding the terms Body Identity Integrity Disorder and Apotemnophilia they may be desiring to classify Amputee and Paraplegia variants differently. When I visited with them, they indicated they suspected some neurological differences between our groups, what those differences are they did not say. They did say we exhibit more intense depression. I think perhaps you will see another paper with a separate term for us or perhaps they just don’t have enough evidence or isn’t conclusive.

Unfortunately, naming rights are indeed a big deal for scientists. Whoever coins the name which catches on often gets credited with making more of a contribution to discovery than is their due. So there is always a motivation to invent a new name. We, the subjects who are being discovered, probably won’t get much of a say in the formal terminology.

Xenomelia, or “foreign limb” sounds like a description for alien hand syndrome. We really don’t need another name for BIID, especially when it sounds like something else.

I’d like to read the article, but refuse to pay $30 for a day’s access to the website.

@Mark: I agree, as far as I am aware, no one with BIID describes the affected limb as being alien. From my meager understanding of neurology, damage to the left parietal lobe can result in “alien” limbs, where the sufferer completely denies that the affected limb is their own. Dr Ramachandran asked me a question, are my legs “alien” or “intrusive”? My answer was the later, my legs feel wrong, not alien. Any amputee variants want to contribute their thoughts on this?

I actually like the sound of xenomelia…

And I agree, paying $30 for access to the article is insane. I assume this research is in some way funded with tax payer dollars… locking information up behind paywalls operated by third parties is a horrible model for academic research.

There are some people involved in direct action re: charging for academic papers. I understand they charge largely for historical reasons (but I “understand” only based on what Ben Goldacre tells me). There a growing number of open access journals now. With any luck (and more direct action) it will all be open access in some years.
It’s worth remembering that it’s not the scientists who put the research behind paywalls, but the journals. And if the research fits best into a particular closed access journal, that’s where it’ll be published (to get the appropriate attention from other academics).

But back to the real topic: I too think that a new name is a bit unnecessary. Xenomelia is a bit ambiguous, and though it might serve, the existing name, BIID, seems to make a lot more sense. It contains the important bit about “identity”.
I can see why researchers might want to draw a line between those PWBs who identify as amputees and those who identify as having SCIs, but instead of doing research and simply discounting the SCI-types there should be separate analysis on the two (or more) groups.

I *should* have access to the journal through my uni, but can’t log in right now for whatever reason. I might post again when I’ve read the paper…

Gravity has hit it spot on regarding paid articles – the journals’ publishers need to get some money out of publishing, otherwise they wouldn’t do it. Open Journals are great, but I don’t believe they’ll take over. Mark, Xavier, check your email. Gravity, some universities delay online access by a month for new publication, you may have to wait a bit.

I don’t like the word xenomelia – it is “ugly” and people hearing it will immediately have a negative impression of us because the word is “complex”. I also don’t like it because instead of being inclusive, it is exclusive. That *really* gets under my skin. I’ve been working really hard for years now to develop the understanding that we all have the same condition that just happens to manifest as a need for amputation, paraplegia, deafness, blindness, etc. This is a major kick in the guts to me and I see it as a move taking us BACK rather than forward.

Yes, I too tried to access the article, but as has been stated before, the price of access is a bit deterring…. and unfortunately I have no university account to try to get access with. Ah well.

Xenomelia sounds like a nice enough word, but it feels like it means something different from BIID. I think xenomelia very accurately addresses that certain limbs feel foreign, but BIID addresses everything – including the possibility of paraplegic, blind, deaf, etc. variants. Is there any reason why the name BIID has been passed over?

I’m not particularly impressed with the new name myself. I agree that there is no real need for yet another name for the condition, even IF the researchers are trying to separate the various aspects of it.

On top of that, this new name is going to be mis-understood by many IMO. While “xeno” may be Greek for ‘foreign’, I’m willing to bet that more people associate it with ‘alien’ like Mark and Xavier have already done. Then we have the second part of “melia”, this sounds too close to ‘philia’ which has too many negative connotations associated with it and is going to bring up negative sub-conscious associations in peoples minds. Again just my opinion, but one born of watching human reactions to new or different experiences and information that they are not properly educated on.

Getting the read the article might be interesting, but I don’t particularly feel an overwhelming need to do so. I trust Sean’s over-view of it and his reporting of it that he provides here. He’s definitely been doing this long enough to know what he’s talking about. :-)