Re: The good, the bad, and the ugly.

[Guest guest]

Is the Google group truly wide open? If so, and if there's no risk

of being shut down as with , then I like that idea, because

believe me, the people who got us shut down, want exactly for us to

go private. It's the big public nature of the discussion that they

find so abhorrent.

It's funny. Most researchers and doctors understand that discussion

and criticism goes with the territory, but a few would rather stamp

out any ideas contrary to their own beliefs. It will actually be

funny to watch if such people ever do somehow mangage to get funding

from a legitimate scientific source, because the scientific

community will absolutely not tolerate such behavior, or research

that can't stand up to questioning. My husband (a scientist) says

it's just a matter of time before people with such attitudes

completely self destruct. The only downside of this whole thing

playing itself out, is that many people could be harmed in the

meantime.

penny

>

> finally answered my query of why the previous group was

removed.

> What I got was a form answer, telling me that a group can removed

for

> basically any reason, without any prior notice. While I can

> understand this behavior is to avoid getting sued (I found posts on

> the web about a suit against , brought by someone in 1999,

> regarding the content of messages which referred to him), I prefer

to

> participate in forums where people are personally responsible for

the

> content of their posts.

>

> On top of that, I just got censored on www.marshallprotocol.com,

for

> posting to a topic that wasn't even related to the protocol:

>

> http://www.marshallprotocol.com/view_topic.php?

id=2035 & forum_id=31 & jump_to=19791#p19791

>

> All this makes me want to revert back to using wide open

news/google

> groups, and/or creating private web pages, rather than risk the

wrath

> of others controlling what I have to say.

>

> Mark

[Guest guest]

What Ken is planning is the best thing. But I've read the Terms of

Service for the Google Groups...

http://www.google.com/googlegroups/terms_of_service.html

and at least for now, they claim they will only delete a group, if it

includes sexually explicit content, and the group is not marked as

containing such content. The reponsibilities of the owner of the

group, and the people posting, regarding defamatory comments and

similar things, are obviously still regulated by the same legal laws

that apply to , or any other discussion group.

There's a long section describing about how they will deal with

complaints about a group. Maybe they will hire a cheap overseas

company to do the mediation. Maybe they figure it's worth doing that,

rather than just deleting the group, so as to keep people reading

messages with their advertisements. But that might change in the future.

> that can't stand up to questioning. My husband (a scientist) says

> it's just a matter of time before people with such attitudes

> completely self destruct.

The internet world is a different place, though. I've monitored the

guaifenesin therapy for about 10 years on the web, a treatment plan

which has much less scientific basis, but that has not self destructed.

As long as you have privately run discussion web pages, and as long as

you have desperate people seeking out cures, you will always find

people willing to try experimental treatments, no matter how many

other people say it's not worth it. Especially when you're dealing

with a treatment plan that takes years, with conditions such as CFS &

FMS, where the results are more subjective. I know people who were on

the guaifenesin plan for years, before they eventually admitted that

it really wasn't helping them. But of course, during all those years,

they were supporters of the treatment, and in the process, convincing

others to try it also. When old supporters drop off, there are always

new ones to take their place.

The only way any experimental protocol dies off, is if better ones are

available, and if the public is proper made aware of them.

[Guest guest]

Mark,

I understand what he was saying. You wanted to share

information with others. However, when reviewing the

research about that medication, a scientist would find

the flaws in the research and realize that it could do

more harm than good. I know how this works on two

fronts: I was trained in grad school to read

research, but when brain fog sets in, I miss things.

That's when I also hand it to my husband, a Cornell

immunotoxicologist. I have him go over research I've

found and if it's flawed, he explains exactly where

the flaws are. That way, I don't go chasing something

down that might not be beneficial and conserve my

energetic chases for things that will be helpful.

I can give you an example. I gave him all of the

research on the Marshall protocol and he reviewed the

concept even running it past colleagues who work more

in that area. Then I found information on HPV-6a

infection and had him read through that. He found

some holes in the latter theory - mainly that the

authors acknowledge 13 studies, but didn't discuss

them saying that their own studies were better. That

is not how it works in the scientific community. My

husband had just gotten finished peer reviewing an

article in which a colleague had done exactly the same

thing. He had been able to go over her research and

point out how not only was her own research not better

than other studies that had already been performed

(including some of my husband's own studies), but that

she had actually ommitted one aspect of EPA requested

data that other studies had included.

If it were just that kind of play back and forth, it

wouldn't be bad, but my husband pointed out how

important it is to be able to identify the infectious

agent. While bacterial and viral infections may share

symptomology, treatment for each is vastly different.

Treating a bacterial infection with an antiviral not

only has no affect on the bacteria, but it can cause

any latent viruses to mutate into resistant strains,

and vice versa if treating viruses with antibiotics.

So there was actually a very important point being

made in what was said to you both for you own safety

and for the safety of others. I don't think he was

just coming down on you. I think he was genuinely

concerned that someone who was too exhausted and brain

fogged to think all of that out might chase down

something that could do more harm than good. Hey, I

know I'm very glad I've got my own personal watchdog

at home. Without him, there are times that I would

high tail it after something that sounded really

plausible just because it provided hope and an

opportunity.

Janice

--- Mark London <mrl@...> wrote:

>

> finally answered my query of why the previous

> group was removed.

> What I got was a form answer, telling me that a

> group can removed for

> basically any reason, without any prior notice.

> While I can

> understand this behavior is to avoid getting sued (I

> found posts on

> the web about a suit against , brought by

> someone in 1999,

> regarding the content of messages which referred to

> him), I prefer to

> participate in forums where people are personally

> responsible for the

> content of their posts.

>

> On top of that, I just got censored on

> www.marshallprotocol.com, for

> posting to a topic that wasn't even related to the

> protocol:

>

>

http://www.marshallprotocol.com/view_topic.php?id=2035 & forum_id=31 & jump_to=19791\

#p19791

>

> All this makes me want to revert back to using wide

> open news/google

> groups, and/or creating private web pages, rather

> than risk the wrath

> of others controlling what I have to say.

>

> Mark

>

>

>

>

>

__________________________________

Celebrate 's 10th Birthday!

Netrospective: 100 Moments of the Web

http://birthday./netrospective/

[Guest guest]

> Mark,

> I understand what he was saying. You wanted to share

> information with others. However, when reviewing the

> research about that medication, a scientist would find

> the flaws in the research and realize that it could do

> more harm than good.

People constantly post studies on that web page. Also, I posted 4

different studies that indicated the same thing. There were more, but

I figured 4 was enough. In fact, one of them was by his favorite

people, Marta Ruiz-Ortega (this reference got removed by the censorship).

The fact is that I wasn't implying that my information would help the

protocol, but that it might relate to cancer, which was what the

original poster asked about. (I pointed that out also in my 2nd

message, but that part got removed by the censorship.)

Besides which, I was posting in the skeptic section of that web page,

which is supposed to allow opposing view points! And I wasn't even

going an opposing view, just a comment on a totally different condition.

All I can figure is that the censor didn't realize what section I was

posting in, and that I wasn't even referring to the protocol. But

that's just a guess.

Mark