On-going discussion Re: Helmut Prahl, Ph.D.

[Guest guest]

Don,

Fairness requires me to tell you this: The content

of your latest posting went to no one who receives

PLS-FRIENDS messages in the Digest format (like me).

(I got the content of your message by going to the

egroups PLS-FRIENDS website and clicking on

" messages " .)

For Digest subscribers, your message came through as

follows:

Message: 1

Date: Sat, 27 May 2000 08:18:33 +0000

From: dcwilso@...

Subject: Mark's rebutal - Don's message - exhange

[This message is not in displayable format]

From what I can tell, eGroups blocks all attachments

from its Digests.

There is a way around this for text based documents

that are saved as Microsoft Word or Wordperfect files.

Save the document as an HTML file. Then attach the

HTML file. For some reason that I'm not aware of,

this seems to work.

And yes, I am all too aware that any criticism of Dr.

Prahl will probably be taken personally by PLS pals

taking his drugs--including yourself. For that I am

profoundly sorry.

As I have recently mentioned in an off-list message to

a few PLS pals, I consider you and the others taking

Dr. Prahl's drugs (or having a spouse who is taking

his drugs) to be good, honorable people doing the best

that they can with a crappy disease. If my wife had

the disease, and I had to watch her ability to move

deteriorate, I may well have tried to get her to try

Dr. Prahl's drugs, and never have decided to

investigate Dr. Prahl. Don, I'm well aware that you

feel that you are doing the very best that you can for

Bettie Jo. And who could fault you for that?

As for Dr. Levy's decision to slowly reduce and

ultimately terminate Dr. Prahl's drug, I fail to see a

distinction between

(1) calling the adverse effects " overdosing " (when the

dose is 1/16th of a pill), and

(2) calling the adverse effects of such a miniscule

amount " adverse side effects " .

Many letters to the editor of the PLS Newsletter over

the years state that patients who discontinued Dr.

Prahl's drugs rapidly deteriorated, but that the

deterioration could be reversed within 2 weeks by

resuming Dr. Prahl's drugs. As I don't have access to

much of Dr. Prahl's writings (and doubt very much that

he will provide me with any) I am not able, at this

time, to refer to a statement actually made by Dr.

Prahl, as distinct from one of the PLS pals taking his

drugs.

I find it incredible that Dr. Levy tried to poo-poo

Dr. Siddique's work. Do not underestimate Dr.

Siddique. He was the lead author of the first study

that found the gene responsible for familial ALS. See

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uid\

s=2020294 & dopt=Abstract

See also a listing of his work on ALS, including an

article on childhood PLS, at

http://www4.ncbi.nlm.nih.gov/PubMed/ (Search for

" Siddique ALS " to avoid loads of irrelevant article

abstracts by other Siddique's.)

As for Dr. Siddique's PLS research: Dr. Siddique

currently needs blood samples from 400 PLS pals, and

certain of their family members, before he can try to

determine the genetic cause of PLS using today's

technology. (Several years ago the numbers required

were much higher.)

The reason that Dr. Levy's blood has not been tested

by Dr. Siddique (assuming that it hasn't) is that 400

blood samples have not yet been collected.

I am hoping that future technology will reduce the

number of blood samples needed to a much smaller

number.

Why should someone taking Dr. Prahl's drugs contribute

blood to Dr. Siddique? (My question, not yours.)

Simple. Keep your options open. Dr. Siddique, and

his team, have a proven track record. He is

interested in PLS. Why fail to join a study that may

help us all? What he may someday find could lead to a

cure. That's why!

Our disagreement over Dr. Prahl and his medications

should and will have no impact on any other

discussions or exchanges of info between you and I.

As I have said before, my focus on Dr. Prahl is solely

on Dr. Prahl--not on PLS pals taking his drugs.

Wishing you and Bettie Jo all the best for this

holiday weekend--and beyond.

Mark

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