Hi John,
I applaud you very much for your efforts in trying to get more research completed for BFS. It is disheartening when the medical community makes you feel like a cast-off...however, I do think there are times where they know there's nothing they can do to make our physical symptoms go away--and so at that point, they address the mental aspect. It's frustrating all the same, but I do understand their perspective. After all, this condition won't be our killer, so they don't pay it much attention. For all of our stress, aches and pains over BFS, I wish it were different--but again, I understand why it's not.
As far as where to go from here: the only thing that comes to my mind is that Mayo Clinic study. You could contact the Mayo clinic and see if anyone is still somewhat involved with that study (follow ups and such) or see if anyone would like to re-visit it. Maybe the newer medical students who need to satisfy any research requirements (???) It would be interesting to take that route--since some group of people at the Mayo clinic saw the necessity to do a BFS study. Maybe they'd revisit the study to focus more on CAUSES of BFS--now that the original study has done it's job of proving no connection between BFS and ALS.
On the downside, I'm not sure how the original BFS study came about in the first place. If it was mainly as a means to discover (or rule out) a possible root-cause of ALS, then I don't know that they would be interested in putting further effort into studying our benign condition--as their focus is on more severe conditions. Guess you never know until you try. I would think that the folks at Mayo (in light of the BFS study) would at least be responsive to your efforts--and maybe give more insight into why they would or wouldn't choose to further delve into BFS.
Thanks again for your efforts!! Keep us posted about your Lyme results.
Amy
I applaud you very much for your efforts in trying to get more research completed for BFS. It is disheartening when the medical community makes you feel like a cast-off...however, I do think there are times where they know there's nothing they can do to make our physical symptoms go away--and so at that point, they address the mental aspect. It's frustrating all the same, but I do understand their perspective. After all, this condition won't be our killer, so they don't pay it much attention. For all of our stress, aches and pains over BFS, I wish it were different--but again, I understand why it's not.
As far as where to go from here: the only thing that comes to my mind is that Mayo Clinic study. You could contact the Mayo clinic and see if anyone is still somewhat involved with that study (follow ups and such) or see if anyone would like to re-visit it. Maybe the newer medical students who need to satisfy any research requirements (???) It would be interesting to take that route--since some group of people at the Mayo clinic saw the necessity to do a BFS study. Maybe they'd revisit the study to focus more on CAUSES of BFS--now that the original study has done it's job of proving no connection between BFS and ALS.
On the downside, I'm not sure how the original BFS study came about in the first place. If it was mainly as a means to discover (or rule out) a possible root-cause of ALS, then I don't know that they would be interested in putting further effort into studying our benign condition--as their focus is on more severe conditions. Guess you never know until you try. I would think that the folks at Mayo (in light of the BFS study) would at least be responsive to your efforts--and maybe give more insight into why they would or wouldn't choose to further delve into BFS.
Thanks again for your efforts!! Keep us posted about your Lyme results.
Amy