Fibromyalgia research activists sought

September 2, 2005

At the LDN meeting June 11 I announced that I was organizing

documented case studies of fibromyalgia and Ehlers-Danlos Syndrome

III (Hypermobility type) which would be conveyed to clinical

researchers in Italy and USA to launch clinical trials of both

diseases.

My own 17 year old daughter, who is mostly bedridden with EDS III

(which looks exactly like fibromyalgia plus loose joints) has been on

LDN for 3 months, and has seen an increase in activity, withdrawal

from all narcotics, and virtual cessation of normal

opportunistic " side-diseases " but little else. However her blood was

tested before and 5 weeks after starting LDN, and it went from 1/6

normal beta-endorphin to 1/2 normal--tested by the world's bestknown

researcher for this test, at the Uni Milan, who will also launch a

fibro trial if she gets comparable results on the fibro studies I'm

seeking. A nurse volunteered a doc in Atlanta to conduct all the

fibro case studies (with my questionnaires and the Milan blood tests)

BUT NOTHING HAS HAPPENED IN almost 3 months.

I need organizational help with this--I'm a full time professor, and

my wife is newly in cancer treatment. I can't find any money to

subsidize the cost of blood sample preparation and shipping to

Milan. I have adequate resources to handle the EDS volunteers and 3

more besides my daughter who will probably commit. But there is no

fibro organization I can find that will help.

Please contact me at nphbrown@... if you 1. can move a doc to

prescribe and monitor a few fibro cases to do blood samples before

and 1 mo and 6 mos after LDN--and my 2 qnrs once/month for 6 mos. 2.

can help raise some cash to subsidize blood sample prep (unusual,

cost me $200 each) and shipping (over $100 for first 2 samples sent

together). We (Dr. Sacerdote at Uni Milan & I) want at least 6

parallel cases of each disease--and the fibro cases should have some

signs or history of joint hypermobility (est. 30% of people).

Please write me at my home email, because I don't browse this web

site. I'm toooo busy. MS (which I have also helped with clinical

trials) has a good organization, but fibro does not ( & EDS org is

dominated by geneticists, so they won't support our immune related

work, though they're allowing us to mention it).

Norman Brown, Ph.D. (Psychology prof)

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