30 Dec 2013 at 1:45PM
Nothing is straightforward with this pesky condition.
30 Dec 2013 at 2:03PM
Hi Supaguy68,
I
watched the YouTube video with great interest. Sarah's recovery is
remarkable. It reminds me of the controversy over antibiotic treatment
for stomach ulcers, and of the fact that every medical assumption can
and should be challenged. The bacterial infection theory looks well
worth following up. There will be resistance in the medical
establishment, of course, but a serious large-scale trial should
eventually conquer that resistance - if it can ever be funded, which I
think is doubtful.
So:
thank you for bringing this stuff to our attention! Your excitement
about it is understandable, as is your anger and frustration at the lack
of progress with effective treatments for progressive forms of MS.
I'd like to address a few of your points in more detail.
"I am Primary Progressive. Nobody in the pharmaceutical industry is working on people like me."
This
is untrue. There is currently a lot of research work going on to find
treatments for PPMS and SPMS. Maybe you haven't noticed it yet. It's
well documented on the MS Society's website and publications.
"I
have compared them to someone who is laying with their legs sprawled
across a level crossing. Even though they don't have a train timetable
... they know the train is gonna come ... and they know what it's gonna
do. I say "Get up! Get off those tracks NOW!""
This
is a very poor analogy. Death by being run over by a train on a level
crossing is a sudden and very destructive business, whereas Progressive
MS, as its name strongly suggests, is a progressive, a gradual thing and
does not lead to a sudden instantaneous death. It's also unclear in the
analogy what 'get off those tracks' translates to in terms of action in
real life for those with MS.
"A decision has been made to boycot this thread en mass."
Do
you have any evidence for this? How do you distinguish 'boycot' from
'reading without contributing'? I don't think you have any grounds for
the assumption that this thread is being boycotted.
"Glad
to learn that there is someone else here with enough gumption to get up
while they can and get the ... out of the way of that that express
steam train that's bearing down on you like a fire-breathing reaper."
This
shows a level of rudeness not acceptable on this forum, and not
justified by your clear anger about your situation and your perception
that others do not share your point of view.
"Sarah
is not following this thread and will not be following it. If you
really want to know why I will post the link to show the descussion but
she said that she found the people here just so rude."
I
have always found these forums to be very courteous. The only rude
contributions I have noticed in recent years have been your own, in this
very thread. This is highly ironic.
"Maybe
you are not deemed clever enough to discern valid comment for yourself.
Ah well ... this is what you have all grown to accept!"
This
is the type of rudeness I mean. I acknowledge that you feel excited,
zealous, indeed, about the course of treatment you have embarked on, and
I wish you well with it. But your excitement, and perhaps also your
frustration, do not give you license to adopt a sneering tone, to
denigrate and insult other members of this forum who may take a more
cautious approach than your own, or who simply disagree with you.
Regards,
Chris