My Email response to MS Society on LDN

[Guest guest]

THE MS SOCIETY DISAPPOINTS ME. WHY DON'T THEY TALK TO PEOPLE THAT LDN HAS HELPED. I TOO HAVE MADE DONATIONS WHEN LOVED ONES HAVE DIED AND WISH YOU TO CONTRIBUTE TO A CHARITY. DID YOU KNOW YOU CAN'T TELL MS TO SEND YOUR $ FOR RESEARCH? TROUBLING EH?

IF I'M WRONG PLEASE LET ME KNOW. MY MOM SENT MONEY AND WANTED IT TO GO TO RESEARCH AND THEY SAID THEY COULDN'T DO THAT. WONDER WHY??? KIM

[Guest guest]

I am an Engineer (Civil and Environmental – Rutgers Univ.), I have

MS and I take LDN.

Shame on the MS Society for the close minded and selfish reporting

of old news and bad science. There are serious questions about the

actual demyelinization mechanisms blamed for MS (the article dated

April 24th in your news letter a prime example), the validity of

using the induced " version " of MS in mice and the article cited from

1994 notes Naloxone and not Naltrexone (with no mention of the

critical component dose – hence LOW DOSE Naltrexone).

As a test engineer I can state with some degree of confidence that

clinical testing is neither perfect nor conclusive. It is merely one

of the best indicators we have. It is only as good as the parameters

initially defined, and the " interpretation " of results which are

presented as " conclusions " . The human factor clearly can skew any

testing including Clinical Double Blind either intentionally or

inadvertently.

Anecdotal evidence, although not scientific in nature, certainly

carries some validity as the number of anecdotal claims increase. At

the very least it is the responsibility of the MS Society to fund

immediate clinical trials rather than publishing weak and woefully

inadequate speculations about something that, for whatever reason,

is helping so many with MS. In addition, is seems apparent that the

MS Society, by criticizing rather than investigating LDN, CHOOSES to

know little about it. Again - Shame on you!

Since being diagnosed several months back a number of donations have

been made on my behalf, both in my name and anonymously (several

substantial). I would like to know how to initiate the process of

having those funds refunded. Although the Society clearly does some

excellent work, it also seems clear something other than the health

and well being of MSers creeps into the decision making process, and

prioritization of expenditures, of donated funds.

My money can be spent more efficiently elsewhere!

Sincerely and with much disappointment,

Alan

(Please respond by return Email)

[Guest guest]

Well stated Alan, Sure wish my mind still worked as well as yours

does!! Hope your eloquent words don't fall on deaf ears.