Re: PLM discussion forum, was re: MS drugs

[Guest guest]

>

>

> When I posted my data on the Patients Like Me (PLM) MS board, it was amazing

how many people threw " flames " at me ! Didn't apologize. Just brought up more

links to posts where it didn't work.

I occasionally look at the forum there (although I very seldom post) and have

observed lots of flaming directed at those with " unorthodox " views. It seems,

for example, that several pro-CCSVI people have been chased away. As have been

those who talked of removing mercury amalgam filings to deal with MS, and other

alternatives.

But then, since the site is funded by selling data on members for research

purposes, I guess the orthodox orientation should not be surprising. I suspect

that there are several " plants " on the forum as well. Lots of people talk about

always checking with your neurologist before you do anything new, like taking a

vitamin pill....what rubbish!

I haven't seen a neurologist in more than 2 years....and I'm scheduled for CCSVI

next Tuesday, January 5th! ;-)

Alice

[Guest guest]

I haven't seen a neurologist in five+ years. If they don't know the reason that

you have MS what can they do to cure it? Congrats for the CCSVI treatment

scheduling!

> I haven't seen a neurologist in more than 2 years....and I'm scheduled for

CCSVI next Tuesday, January 5th! ;-)

>

> Alice

>

[Guest guest]

selling data from this forum? how do you know that?

My wife hasn't seen a neuro for about 15 years. they have nothing to offer and

simply tell you what you already know.

If i had my way 30% of ALL RESEARCH funding would go DIRECTLY to people with MS.

Since there is NO cure I think research funding in part would immediately help

people with MS NOW rather than some possible time in the future by way of

donating 30% of research funds to buy shower beds/chairs wound care products ad

management, wheelchairs etc etc...

russ

> >

> >

> > When I posted my data on the Patients Like Me (PLM) MS board, it was amazing

how many people threw " flames " at me ! Didn't apologize. Just brought up more

links to posts where it didn't work.

>

>

> I occasionally look at the forum there (although I very seldom post) and have

observed lots of flaming directed at those with " unorthodox " views. It seems,

for example, that several pro-CCSVI people have been chased away. As have been

those who talked of removing mercury amalgam filings to deal with MS, and other

alternatives.

>

> But then, since the site is funded by selling data on members for research

purposes, I guess the orthodox orientation should not be surprising. I suspect

that there are several " plants " on the forum as well. Lots of people talk about

always checking with your neurologist before you do anything new, like taking a

vitamin pill....what rubbish!

>

> I haven't seen a neurologist in more than 2 years....and I'm scheduled for

CCSVI next Tuesday, January 5th! ;-)

>

> Alice

>

[Guest guest]

, I SO agree with you about PLM! I didn't know the moderators were

getting into the act as well....sheesh! I've only made a few posts there, which

mostly seem to have been ignored-----fortunately, I guess. I hate to see all the

flame wars, so I mostly avoid the place.

And tomorrow is my big day....yippee!

Alice

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>

> Hi Alice

> Yeah, I've had a few 'lectures' from Moderators on PLM regarding my views and

my management of MY dis-ease.

> *shakes head*

> I don't go there very often at all anymore - as an adult, I don't really enjoy

being lectured about MY choices by people who haven't any REAL idea what they're

talking about.

> I do spread word to people there though because I'll be buggered if I'll be

stopped from spreading the 'alternative' point of view to people in order to

give them a choice regarding THEIR situation and how THEY handle THEIR 'MS'.

>

> It's great to hear that you're moving forward with your CCSVI journey!!

>

>

[Guest guest]

Which note to respond to....

USED to post much on PLM.

Posted some of my data showing LDN was not the end-all be-all drug many people

brag about. One lady on there was rather amusing when she posted a dozen or

more links, presumably positive LDN stories. Never looked at them.

There was one " uber-poster " on there that I suspect must be getting a pay check

to keep posting replies. She and I clashed a couple of times. Eventually she

and were able to avoid each other. Then one of the uber-posters minions started

attacking my posts. Decided to fall-back and avoid PLM.

Darn shame because the patient profile page is especially useful.

PLM is up front about selling data. Read their home page.

Yes, our neurologists are not equipped to deal with MS. they are tied to only

being able to prescribe CRAB drugs that have a 33% chance of slowing the disease

down.

For me, I've switched to antibiotics to treat my sickness. Have had off and on

positive results.