Subject: RESEARCH NEWS, Diets and stuff

From: LaVonne Murphy <[email-masked]>
Date: Thu, 05 Dec 1996 22:22:55 -0800

Hi Gang

Went to out Annual Meeting last night and learned a couple of things you might have 
interest in.

Dr Lemke from Salk Institute spoke on research on remylination.  He has two post 
doctorate students doing research on two different aspects of this.  Sorry, didn't 
understand one of them at all.  The other has discovered a protein that lives either in 
the cell bodies or the genes that control remylination by the oligodendrocytes, schwann 
cells and in the retina ONLY.  Didn't understand this really well either.  This stuff is 
more technical than I have ever studied.  Am going to try to get a book on beginning 
genetics if I can find one in my price range.  But this stuff is way above me so don't 
expect miracles.  But they are making progress in this direction.

Also Dr Shapiro spoke on current research on treatments and meds for control of Sx.  
They are testing BetaSeron for Secondary Progressives, which you all knew.  They are 
testing Avonex on Primary Progressives and people just diagnosed or people as yet 
undiagnosed but with a few minor Sx to see if they can prevent the development of MS.  
Avonex is also expected to be approved in Europe, Canada and other developed 
countries within the next couple of months but approval by their medical 
systems could take longer because of the expense of the drug.  They may wait 
until Copolymer 1 is approved to see if the cost is lower.  Copolymer 1 is expected out 
in the spring in the US and has just been approved two weeks ago in Israel for use in 
the general MS population with RR.  The report on oral myelin should be out in the late 
spring or early summer on the stage 3 testing.

He had about 20 drugs and treatments, including the ones above, listed on a slide and 
said there are over 100 more in the process of being tested for all forms of MS.  These 
tests are being done all over the world but most are here in the US.  The US NMSS has 
put more than $200,000,000 into research in the last year!!!  Over $2,000,000 of that is 
being done here in San Diego County.

To quote Dr Shapiro, "There is more reason to have hope than ever before."  I asked him 
about the availability of treatments and drugs in other countries.  That's how I got the 
info about countries where medications are under the control of governmental medical 
plans.  Unfortunately, other countries such as Iran, Iraq, and some other third world 
countries will not make these new medications or upcoming ones available to their people 
at all.  A good deal of this is political.  And most do not want to provide these 
expensive treatments available to the masses.  (It's my guess that the rich will be able 
to travel out of country to obtain treatment and pay for it out of pocket.)

DHEA:  I was going to ask this question too but somebody beat me to the punch.  It has 
not been studied at all for MS though Dr Shapiro stated that it has interesting aspects 
to it.  I don't know if no one has presented a study that looks promising or if the 
committee that decides where the funds will go can't agree.

Diet:  There has been no diet adequately tested because clinical trials are not 
possible.  The Swank Diet shows some promise but it may be because it is a *very* 
healthy diet for anyone.  If you are going to try a diet, this is the one you should 
try.

Vitamins and stuff:  Stay away from B6.  This can be disastrous for people with MS 
unless your MD has tested you and you are lacking on it.  It should be carefully 
monitored even then.  Melatonin can be fatal for people with MS.

It is impossible for me to remember all the details on this stuff.  We had two hours of 
lecturing and Q&A and this was held in the evening.  My attention span is not always 
good at that time of day.  You can e-mail [email-masked] for further info and address 
your inquiry to the Research Dept. or IRC (Information Resource Center) and ask for the 
technical stuff on your question.  Be sure to include your snail mail address because 
any info will be sent to you that way.

Hope some of this adds a little joy or at least releif to your Holiday Season.

                                            L