Interesting Ted Talk On "unsolved" Illness

[sue1234]

I found this interview interesting. Even though the woman claims she has ME, it sounds like she's got whatever we have. Maybe we all have "________", and don't know it. "_____" hasn't been discovered yet! Anyway, here is how she describes herself when asked what happens to her physically if she over-exerts(and most of us know that that can mean just taking a shower or something else mild):

"All my symptoms get worse. I might just collapse: I’ll be walking and then just go pfft. I might stand up and have my heart rate go up — something called postural orthostatic tachycardia. That, for me, is what the dizziness is. It also happens if I eat starchy foods, because I have severe glucose metabolism issues, so I might eat too many strawberries and then, you know, drop to the floor. Often when I overexert myself, I can’t breathe. It’s not a question, really, of getting enough oxygen in my blood, although my breathing is certainly affected by this. But rather that my cells can’t breathe, because they cannot produce energy under aerobic conditions."

Interesting that she has orthostatic issues, glucose issues, respiratory issues, and energy issues. All things I know I have, and a lot of you have. How do the labels get put on? CFS, POTS, ME?

Interesting about the issue of feeling like you don't get enough oxygen being related to cells not breathing.

She is also correct in mentioning that scientists/researchers would be more appropriate to address these unsolved medical issues than doctors. I've often wished I could meet up with an interested researcher to go over my illness.

Oh, here's the link:

http://blog.ted.com/2013/10/25/illuminating-an-illness-without-end-fellows-friday-with-jennifer-brea/

[bellgirl]

Doctor's don't have the time to research outside of their specialty, and the problem is that if there isn't a specialty for you, then your condition essentially doesn't exist...The good thing is that there is research being done for all of this, it's just not enough. I have the faith and hope that one day, they will find a cause for all of these disorders that seem to overlap. This was very interesting. Thank you for sharing. I love TED groups around the globe. They really get people's attention, and she is one who has the motivation and the wear- with- all to be able to make this movie.

[Chaos]

I am constantly amazed that "outside their specialty" means outside their one tiny little area of focus in your body. Eg...go see a neurologist and he refuses to even discuss the autonomic nervous system and will only address migraines. Hello! Whatever happened to doctors looking at a patient as a whole person? Does not the autonomic nervous system integrate have some impact on migraines? Do migraines not affect the GI system (nausea and vomiting?) Does that not have cause "stress" (every doctor's favorite diagnosis these days? ) on the immune system? Does that not also have an effect on the endocrine system? How can they be so blind to all of this????

Sorry. Rant over!

[sue1234]

Bellgirl and Chaos,

I definitely agree that they don't look at the whole system anymore. Maybe this documentary will get some serious interest since it aligned with TED talks. I still see what she has as being similar to what we have, so maybe the professionals that research will think on it. I found it interesting when she talked about the clusters of outbreak in Nevada in the 50s. Some odd virus or environmental maybe?

[Chaos]

There were outbreaks in Incline Village (near Tahoe) in the 80's but there have been numerous outbreaks documented back into the 1800's. Apparently they were calling it "polio light" as many times nursing staff at the polio hospitals would come down with it. They even think Florence Nightengale had some version of this.

Yes, I definitely think it all looks like variations on the same theme. Hope they start recognizing it as such. Seems like some docs are catching on to the fact that there are clearly overlapping situations here. Wish more of them were.

Thanks for posting this TED talks Sue. Last I saw they were up to a significant amount of the financing they need to make the movie. Any exposure we can get would be helpful. Maybe I'll email her and see how much time she might be willing to devote to the POTS part of her disease on film.

[bellgirl]

TED talks have been all the rage, even here in Huntsville, Alabama, so I'm hoping that it might raise awareness!! Maybe I'll consider doing something on Dysautonomia here. I know one other person here that has been diagnosed with our illness, and she is a nurse, like I am. Something needs to be done, but I don't know how all the energy it takes to do something like this would be on me, and if I could handle it alone. Just being realistic...Mine also started with a virus that left me with a misaligned eye and neuritis on my right side, and now I have Fibro, too, that I believe was triggered by the Dysautonomia. At least we could present it from the medical perspective...now I've got an idea. I always wanted to start a support group, but maybe I'm supposed to do this instead....hum.