Hillenbrand/CFIDSME Activism

[Guest guest]

Imho, In order to unify ourselves we need to look at commonality of causes.

For instance, probably almost any of us here would get pos for the ciguatera

test as done by Dr. Hokama. I would venture to say that almost all of us too

would score pos for a VCS test as well, showing we have neurotoxins. Yet how

many of us have even tried to use cholestyramine to remove them, and use it in

its proper amount 4X day for many many weeks ( is only one I recall on

this entire list who did just that). finds mold avoidance to be single

most effective therapy and yet who here has cared to learn from his experience

to

see if he is correct or not and prove him wrong in his statement that he has

yet to find one CFSer who does not react to mold? Folks, we got lots of work

to do to try to get well ourselves, which is our responsibility, before we

worry about politicians helping us out. Now, I guess I am a lone voice on this

but I would love to see both GWS and lyme groups send in blood samples to

Hokama and see if they too get pos for the ciguatera test. Instead, I see NCF

try

to make CFS into a unique illness in and of itself rather than look at

commonalities of it b/t other illnesses. Hopefully this research into the

neurotoxins and liver will yield some interesting understanding and progress in

our

quest to heal.