Quote:
Originally Posted by mrsD
It would be nice if you could put this information up on that link I gave you to our subforum. The subforum is where we are trying to store informational posts. It is so hard to organize all the stuff that happens with PN here, with all the causes and treatments!
There was that study on Vit C...which I believe did not pan out as expected.
I don't think CMT has had the funding to do major studies with the nutrients for mito support. And that is very unfortunate.
At this time people can only try things. I know the mito patients do get a cocktail of CoQ-10 and carnitine among other nutrients.
I think we are at a cross roads of sorts between the empirical data and how to correct what is reported.
You might contact Kitt... she seems to have her own ideas about this subject, and she is more informed about CMT than I am. I see Kitt did log on recently, so maybe she will come on this thread. You have to post a little bit more to enable Private Message function. Not long now. I don't see that she has enabled email to be sent thru the NT system however.
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You are correct at Vitamin C. That was tried in studies in both the US and Australia on CMT1 and neither test showed any improvement.
I can tell you that both HNF and the CMTA are currently funding research into both CMT1 and CMT2. But you are correct in that the funding is relatively small and the studies are quite limited currently. One of the CMT1 studies has identified three compounds (molecules) that seem to be beneficial to CMT1. Further studies will be needed to determine efficacy. A similar study is about to get underway for CMT2.
It's quite frustrating that CMT is a more prevalent disease than MS but the funding for research is a small fraction of that for MS.