Quote:
Originally Posted by mrsD
Well, I am not impressed with them. I have seen them on Today TV program...they could not even get a few minutes segment to explain it ..all they did was hold up a T-shirt, and say "join".
To me that was the most lame thing ever. I suspect... drum roll please as I get my paranoid hat on.... that Big Pharma is behind it like it is in another area, ADHD, CHADD. CHADD gets about 50% of its funding from Big Pharma. CHADD therefore, promotes drugs for children mostly. If Big Pharma is NOT donating to this Assoc. then maybe NO ONE is, and they have no money. Well, I have for a DECADE donated my time for FREE to this forum and its predecessor board, to help people advocate for themselves. (and I have met many wonderful people along the way too!)
I have something else to add: I firmly believe each patient should be his/her own advocate. Waiting and relying on an "Association" to do something for you these days, will result in a LONG WAIT.
There is a substantial amount of information on the net from reliable medical opinions, to allow most people to form their own path of helping themselves. Special interest groups, whether it is Big Pharma which wants to guard its major money making drugs jealously, or any other group ( some doctors who want your exclusive business) can be obstructing in the end to your finding some relief from your pain and stress. Some of the "treatments" offered today are financially out the of reach of many, as well, and may be toxic in the end.
I found much information on PN, myself, and share it freely here.
People reading can take it or leave it...but I think they are capable for the most part in making those decisions.
I believe PN is an environmental disease (apart from the metabolic causes--but even diabetes is somewhat environmental because of the poor dietary choices we have in our food supply). That means toxins and drugs (given by doctors) can create your PN. CNN is running a show about this now by S. Gupta, who claims that studies are showing the average American consumes pesticides regularly.
More here: this is just one alarming example:
http://ac360.blogs.cnn.com/2010/06/0...ue-group-says/ |
Yeah I agree with the environmental toxin portion(going to try OSR #1 now). I am almost convinced that the pharms I took(Prevacid, Cipro) along with some physical events caused mine. Our Food Industry definitely promotes Diabetes, Heart Disease and many other 20-21st century diseases. Then you when your sick, you have Big Pharma waiting to prescribe a pill(which usually leads to 6 other pills.)
As for the Neuropathy Association, I would almost like to write them a letter and see what they might be able to do to fix some of these things. I too thought that maybe they were owned or majorly contributed to by Big Pharma and that is why things are not really going anywhere. It seems like it is more profitable in the end for them to treat our symptoms than to treat our problems. It is disgusting when I see or hear people's problems getting worse because of this prolongued symptom treatment.
In Europe and Japan for over 20 years they have been halting and even reversing certain neuropathies(mainly diabetic, alcoholic) to a degree with Benfotiamine and Alpha Lipoic Acid and other modalities. But our doctors won't tell us this. Why? Because they only read Pharma research journals which basically drive their decisions towards bandaid symptom treatment(pain meds) moneymakers instead of disease resolution.
Until someone calls attention to this problem, everything will probably stay the same. I agree we alone and are our best advocate but without a true organizing force detached from Pharma's influence, we are stuck! I would like to change this. I have some ideas but would like anyone's opinions as well.