From my site - Why I left Patients Like Me

[Guest guest]

hi joseph

I was sorry you left patientslikeme website.

but i understand why you left.

I cannot believe how bad things got and out of control.

anyway you do not need to be with people that cannot

control their angry. somepeople are so use to being sick or

disappointed their cannot let go of it. please let me know how you are

doing, and any new dicoveries about getting better from ms. i did try

to e-mail you on plsm.website but you were gone.

diane

Comment by diane or rosetta | August 1, 2008 | Edit

Hi Diane,

That’s so nice of you to write to my blog. I originally believed

what you wrote, that “some people are so use to being sick or

disappointed they cannot let go of it.†Events on the board ended up

convincing me otherwise.

The attacks made no sense from the get-go. I only posted my own

experience or interesting pieces I found on the internet. I never once

attacked or even spoke about anybody else on the board. And yet, I

discerned a pattern in all the craziness. I was reminded of my New Left

college experiences where political factions would be fighting with one

another. Each faction would vocally and enthusiastically support

anything said by one of their members. No matter how pointless. No

matter how stupid.

It was this repetitive chorus of automatic agreement from the same 5

or so people over and over and over that finally convinced me that this

was not random incoherence from sick people at all. It was a very well

planned, systematic method of making sure that anyone mentioning LDN in

the forum would be marginalize as a “far-out†deluded fool. In my case

they got to throw in “drug crazed†as well.

The reaction of the administration to what was happening made it

clear that this was no chance event. The ominous semi-threats sent to

my web site by Got.MS (we had the IP address remember?) at JCA’s

direction (I had drawn a line in the sand concerning her attacks on

Gracie 10 minutes earlier) evoked no response at all. They actually

told me that since the threats were received at a site other than PLM,

it was not their concern. I understood then what should have been clear

from the beginning. They were bought out as well, and may have even

coordinated the attacks with the attackers.

Think about it. If you ran a forum that was supposed to really help

sick people, would you let that kind of thing go on? Would you let

people be driven out of your forum by that kind of behaviour? Or would

you warn the troublemakers and then boot them if they continued?

That group was never called to task for anything they did or said.

Tim suggested that all LDN posts be put in one thread. OK, but why only

LDN and not all the other treatments?

After I escaped that place, people wrote to me telling me that I was

only the latest in a long series of people who had been attacked,

marginalized and forced to quit the board by the SAME group of people.

I wasn’t in the least bit surprised.

You see, this experience answered for me in part the reason why more

than 20 years after its potential benefits to auto immune sufferers was

discovered, LDN remained essentially unknown to anyone except a select

few. That’s why my friend Rivka died a horrible death from multiple

myloma. When I researched the disease, any mention of LDN was simply

too far down in Google for me to find. If I had know to search instead

for “LDN†she would likely be alive and healthy today.

That’s what I am going to try to do with my book. I’m not going to

bother with forums anymore until I get it published. I want everybody

to know to at least check out LDN on Google and decide for themselves

whether to give it a try. In a weird way, I feel like that’s the reason

my life was spared. I have to do this. It feels like the Blues Brothers

movie. You know, “We’re on a mission from God…â€

I don’t believe in that kind of “God†per se. I don’t really

“believe†anything having to do with stuff like that. My good friend,

Anton used to say, “belief begins where thinking endsâ€,

and I try to “believe†nothing as a consequence. But some events cause

one to behave as if one believed. This is one of those times for me.

Just check back on my blog for the latest. I’m not planning on

posting anywhere else for now. And again, thank you for your kind

words. It helps make up for the really awful experience I had on PLM.

Warmest,

Joe