Let them eat cake!

[Aliantha]

lmao...it's obviously not that supersecret.

[DanaC]

hey....we're British, we don't do proper secrets, just commonly understood things that nobody talks about.

[Aliantha]

It's rather ironic that your best secret agent is a figment of someone's imagination huh? lol

[DanaC]

That's exactly what we want you to think.....nyah....nyah nyah.....oh hang on, no that's right. Yep.

[Aliantha]

[9th Engineer]

Do you NEED to show me that you're sick? No really, but what you're doing now is certainly not convincing me to believe you. You are asking me to believe that you have a genetic mutation of some sort which causes these symptoms, but is so rare that it has never been classified. Do you realize exactly what the odds are on that? This is not even something like schizophrenia which is a long standing and well documented disorder. You are saying you have something that no one has ever had before, or at least never in a developed nation. We have names and studies on conditions that affect only one in many millions of people, so if it is really genetic then either the mutation occured within the past few generations or you would be able to trace it back much further than your great uncle.
I'm a bioengineer, this type of stuff is my bread and butter and I know all about how stuff like this goes through the scientific community.
You are asking me to take a multi-billion-to-one occurence at face value (yes, that is the probability of what you claim happend, actually happening.)

Oh, and please don't go on about your opinion of me. This is an internet message board for crying out loud! You are not my coworker, my collegue, or really even an acquaintance for that matter. That's why this is not a personal attack and why I'm not worried about your reaction affecting me in any way.


EDIT: When did asking for more information become an attack?? Just send me the name of the journals

[JayMcGee]

I was always oppossed to Transportation.... we should have hanged them....

[Aliantha]

Yeah well, had you done that, you might have been able to win a match of cricket.

They are not isolated from each other, it is a genetic issue, not so easy to show in short-hand (they system is set-up to deny complex disorders) and how do you know so much about this? I have not discussed my disorder in detail here... you assume much, as ever.

Originally Posted by DanaC

'Those people' refers to the people I represent; the echoes, refer to this thread: the attitudes displayed to Mari's condition; the legions of armchair neurologists/psychiatrists/fraud detectors; the experiences brought to the debate by several other posters; and finally, the experiences I had during a prolonged illness in my childhood, teenage years and early twenties, which I started to post about and then decided to erase and start again, because a significant proportion of the people posting here cannot be trusted with details of such a personal experience.

I have, and will not, discuss all of my disorders or how I know about other's experiences with different types of illness.
There is a lot of the last acceptable prejudice in here...

[9th Engineer]

What I'm refering to is your statement about it being so rare it has no name, nonsense. If research has proven that there is a genetic corralation between those symptoms then it has been named. If you don't want to give details about yourself then that's fine, although you could just post a link to the medical journal that published the study on the genetics.

[xoxoxoBruce]

Originally Posted by rkzenrage

They are not isolated from each other, it is a genetic issue, not so easy to show in short-hand (they system is set-up to deny complex disorders) and how do you know so much about this? I have not discussed my disorder in detail here... you assume much, as ever.

I have, and will not, discuss all of my disorders or how I know about other's experiences with different types of illness.
There is a lot of the last acceptable prejudice in here...

Whoa, chill out. What prejudice?
I don't see anyone questioning your problems, only how you determined it is genetically based. Apparently you feel it is a genetic condition because of family history rather than a medical determination by doctors, that are stumped.
I'm sure you're aggravated by the system, that won't accept that determination and is trying to stuff you in several pigeon holes at once. But, that's not our fault, we're not them.
There's no reason to be defensive here. There's nobody on this board that's going to effect you life one way or the other.

If you don't want to discuss it that's your privilege, but if you bring it up, it's unreasonable to expect people not to ask questions. After all, that's what the board is about, topics of discussion.

Medical conditions that are named, have to be described in detail and parameters established to determine if any other case falls in the same category or is something else.... perhaps something new.
Because the insurance companies will try to nit pick, the doctor naming the condition has to dot every i and cross every t. That means a lot of time and effort, taking time away from actually treating patients. It would be reasonable to expect some doctors to concentrate on treating patients rather than writing papers for medical journals.

Peace out, we're not the enemy.... ok?

[Isis]

Wow, I don't think I've ever seen so many people with axes to grind in one place, or as many people willing to get in over their heads and make obvious fools of themselves.
Marichiko, you are a librarian and you're trying to tell a Bioengineer he has his stuff wrong??!? Are you really prepared to go head to head with both of us to back that up? You don't even have the training to know the basics of ANY of the topics you mentioned. I don't care how much google searching you do or how many hours you spend reading WebMD.com, you still do not know enough to question either of us.
Rzkenrage, cool your heels man. 9th isn't trying to insult you. You made a pretty huge claim and then said that there was information in our database explaining more about it. 9th wanted to read it, you said no, he got angry. Everyone I know in our department has a hyperactive sense of skepticism, if you raise even the tiniest red flag or say something that trips a switch somewhere we're going to go after it. It's just part of what they teach us. I wouldn't mind reading it myself once we finish up with finals this week (5 finals, last on friday at 6pm ).
@9th: Maybe you should go easier on the House re-runs for a bit.

Hmmm... Isis, I suggest you get to know the board a little better before you start making condescending comments to the folks who have been around for a while. Where did YOU get your degree from and what's your field?

Sure, I'll go head to head with you. What would you like to start with?

LOL... I love that you are so transparent. My condition is genetic, it does not currently have a name. The only person who may have had it, that we know of was a great uncle. I am in journals for several of my conditions (a medical textbook for my brain) and could give a shit if you believe me. Your respect or belief in me is a thing that I hold in less regard than something I ate yesterday.

As for schizophrenia and what those that suffer from it can or cannot do, the degrees of that disorder are so extreme as to make that conversation impossible to have on that level. Depression is currently listed as a form of it.

[9th Engineer]

Why is this about my respect or belief in you? You said something I thought was out of whack and said so, all I asked was that you post some other information to clarify what you said. You must know the names of the journals you mentioned, I have access to all the medical journals at the university so it would be simple for me to look up this stuff for myself. If you aren't comfortable with me finding your real name (unless you somehow had it omitted from the study?) then just say so, don't make this personal.
You arn't going to win alot of trust by saying that you are the either the only person who has ever had this condition or a close second and then refusing to point to some literature on the topic. Now there's another posibility entirely, do these journals say that they have found that your symptoms are part of a larger genetic disorder? Or do they say that there may be a connection? Or for that matter is there one which covers this at all, you said several of your conditions which insinuates that they aren't talking about a singe genetic condition.
Having a disorder is not a licence to get angery and rude to anyone who asks you about it. Even if I was directly questioning the validity of your claims, then you should point me in the direction of the studies which support your statements, not claim that I am transparent because I don't take the word of someone I don't know except over an internet message board as infallible.