Fibromyalgia, Ehlers-danlos Syndrome & Sleep disturbance 1794

[Guest guest]

Norman, have you considered calling Dr. Bernard Bihari? Do you know who he

is? (212-929-4196)

[Guest guest]

> Norman, have you considered calling Dr. Bernard Bihari? Do you

know who he

> is? (212-929-4196)

>

>

Thanks . I interviewed Bihari over the phone in Dec. 2004 and

have talked with him several times since then. What I provided to

the naltrexone network is potentially priceless, through my

networking among researchers--so Bihari will speak with me when he

has time. But he doesn't know anything about EDS, and none of the

activists in the network have helped me to gather volunteers for the

fibro and EDS case studies I designed with the input and verbal

support of the NIH researcher in charge of the large current 5 yr

connective tissue diagnostic study--who said she'd apply to do a

pilot trial with LDN for EDS III if I could supply her with the

evidence of successful case studies.

Everybody is overloaded with work--it's the American way of " life. "

So our priorities are what determines what gets done and what

doesn't. And fibro is not a high priority among the network ingroup

of LDN, to which I also belong. Nor is fibro a high priority with

Dr. Sacerdote in Milan, to whom I have direct email & phone access.

That's why fibro research needs to become a priority for a few people

somewhere (a nurse who uses LDN for her fibro promised to shepherd

the case studies in Atlanta, but she no longer keeps in contact with

me, nor did she provide me with her pain specialist's contact info so

I could work with him). I could even use a few allies in the EDS

community.

Norman