Re: CJD questions

[Guest guest]

Dear Terry,

Thanks for both your message below, and your earlier message via CJD Voice.

You have absolutely no need to apologize - and think I should make it plain

that I have always put the interests of those I see as potential or factual

victims of misguided government policy, and bad science, ahead of my own

academic security [at enormous personal penalty, I might also add]. My

reasons for not responding, as yet, are chiefly that I am literally snowed

under with deadlines for book chapters and articles, together with more

than 2000 other answered letters, phone and email messages, and I wanted to

reply to your questions in full, rather than with several of my often

uninformative " one liners " .

It is probably also worth admitting that I have responded in the last 2

days to various requests for CJD articles, not because I feel CJD is more

important than my other deadlines or unanswered requests [the majority of

which are also concerned with putting information into the public domain],

but because I feel so guilty that after 8 years of CJD activism, that I

have not yet done enough to prevent the trauma of this disease remaining a

real life experience for so many.

To simply say, " I offer you my deepest sympathy " is not enough. There is

much more to be done, but rather than ignore the emails of CJD Voice

members searching for information, I put aside some of what is being done

to simply say " Yes, air mail copy on the way " . To do otherwise, I felt

might add to the " suffering " . So my dear Terry, what I am saying is " I will

answer your questions in due course, perhaps in just a few hours time, when

I have made space to treat your questions with the respect each deserves.

But please no more apologies. It is I who should be saying " sorry " for not

having the capacity to answer more immediately.

With my kindest regards you and to all at CJD Voice, Lynette.

____________________________________________

At 08:47 PM 1/20/99 +0000, you wrote:

>Hello Dr. Dumble, I got to thinking, I did not mean to put you on the

>spot, by asking you those questions (your position and everything). I

>just know, you know, what's happening here. I just thought you would

>make it clear to these families, that they in fact, have not proven that

>CJD and nvCJD, are not tied together in some way or another, and that

>CJD could still be tied to BSE, because of their test procedures not

>being capable of testing the low infectivity levels. I believe in you,

>and I respect you and your thoughts, didn't use any caps, and by no

>means want to put you on a spot or make you mad. I would not blame you

>for not responding (your position and my reputation), it seems I have

>upset a lot of folks lately. But I just wanted you to know this, and

>that I meant no disrespect in the questions (and by all means, if I am

>wrong, please tell me). Thanks for all your help to me and everyone else

>you have helped. Very Sincere, Terry S. Singeltary Sr./MADSON

>

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