Originally posted by picklewalsh
I just thought i would raise awerness of it, and just to let people know if they do have it there not alone.
Always a good idea IMO - and good on you!
I do however belive there should be more reserch into it.
There may be more than you think. If you are up to it you might start researching - stick to the peer reviewed stuff tho. Many so-called rare and
under-researched diseases have benefited GREATLY from a few interested (and obsessive) patients who review the literature and remind everyone of
everything that has been done.
...The medical system tends to reward researchers who do
new work, and there is NO glory in going back to collect all the old stuff together,
even at the graduate level. So it doesn't get done, important work often is lost or forgotten - and sometimes the last overlooked link is found by
someone like you, motivated by a totally personal interest.
Good luck and best wishes, whatever you do.
