Hi Everyone,
Here is some feedback I received recently regarding the California
clinical trial of LDN for MS:
Hello Dudley,
Thank you for the patient update on the UCSF LDN trial. I can fill in a
bit on, as I was the organizer for the patient fund-raising effort,
stemming from my earlier survey efforts of hundreds of MSers using LDN,
published at
http://LDNers.org
in which 287 survey respondants reported 76% symptom improvement and 50%
halt to progression.
Following the 2005 conference on LDN, I and a few other LDN advocates
launched the fund for LDN research. By the time we had raised
$25,000, news arrived that Dr Cree of UCSF was considering an
LDN trial. It is noteworthy that he was considering this study before
he even knew about our fund. I called him and he explained it was a
low cost study, only using QoL, with a budget of $50,000.
Using our fund as seed, he said he could fund the remainder. The fund
committee recognized that this was a minimal end-point data study,
but we decided this was the best way to "kick off" LDN for MS research
because UCSF is a respected academic MS research center. And, should
they detect a positive effect, they will be in a position to receive
higher funding from NIH, like the $500,000 that was awarded to Penn
State for expanding the Crohn's trial, following their highly positive
small pilot study that showed 67% disease remission, for a
previously incurable condition.
And I can report that even before conclusion of the UCSF trial, other
research interest is surfacing. Summa Hospital System of Akron, Ohio is
starting a 36 person LDN/MS trial, and today I found this article:
'Low-Dose Naltrexone for Treatment of Multiple Sclerosis: Clinical
Trials Are Needed' -- Ann Pharmacother. 2007 Jul 10 PMID: 17623758
And there is interest arising for the other areas of application for Low
Dose Naltrexone, like fibromyalgia, cancer and HIV. All of these can be
tracked at
http://ldninfo.org/ldn_latest_news.htm
I have also been approached by an author who has already published
several medical reference books on autoimmune disorders under McFarland.
Anyone who has relevant clinical or anecdotal experience with LDN for
any application, please send them my way.
SammyJo Wilkinson
http://LDNers.org
<
DudleyDelany@...> wrote:
Hi Everyone,
The following is a comment that appeared on the Internet by a
participant in the California clinical trial of LDN for MS:
"I completed my 17 week participation in the UCSF LDN study on July
3.
Unfortunately, I don't think the study was well run. The study only
included a very subjective quality of life questionnaire at the start,
middle, & end of the study. No objective measurements were taken such as
MRI, blood test, physical exam, etc.
DU"
Doesn't sound so great, but it will have to suffice until something
better comes along. I presume, since this was a patient-funded trial,
fancy stuff like serial MRI's for every patient was just too costly. At
any rate, as the saying goes, "Half a loaf is better than none."
With best wishes,
Dudley Delany, R.N., M.A., D.C.
http://profiles.yahoo.com/dudley_delany