What we can and cannot post here (for Ken)

[Guest guest]

Ken,

I'm fairly new to the group. I'm confused as to what type of messages

we can and cannot post. I've posted ones asking about certain

treatments and supplements. Is that okay to do? I have to go to the

VA for care, since I don't have any insurance. They know very little

about CFS and Fibro. I need groups like this to learn.

Sue

[Guest guest]

Any question about treatment is fine...

For example,

" Have anyone been totally cured? If so, what protocols... " (I would be

one of those: Hemex/Jadin combination)

" What is the recommended - best protocol to start with? " (I would

suggest looking at http://lassesen.com/cfids/protocols.htm

<http://lassesen.com/cfids/protocols.htm> to see the results of polls

already done on this site)

" I've heard about Salt-n-C, can someone tell me what their experience

has been? "

Avoid asking open-ended question like " what do you think " -- because you

get speculation (often with little factural / experience basis) from

some...

" My test results shows that I have a problem with ???? " How do I treat

it?

You can always email people DIRECTLY (using ) for other information

-- like

" Bill, how did you get VA to approve that treatment? "

>

> Ken,

> I'm fairly new to the group. I'm confused as to what type of messages

> we can and cannot post. I've posted ones asking about certain

> treatments and supplements. Is that okay to do? I have to go to the

> VA for care, since I don't have any insurance. They know very little

> about CFS and Fibro. I need groups like this to learn.

> Sue

>

[Guest guest]

sb2boys wrote:

>

>

> Ken,

> I'm fairly new to the group. I'm confused as to what type of messages

> we can and cannot post.

1. I'd like to butt in here and propose that we ask list subscribers to

refrain from posting " me too " type messages. An example of a " me too "

message would be a post that says nothing but " I agree competely " and

adds no new useful information to the discussion.

On one list I subscribe to, you can get banned for posting " me too "

messages. And I think it's a great rule because it cuts way down on all

the " clutter " messages.

The sheer quantity of messages arriving from CFSMExperimental each day

is so overwhelming that I often end up deleting hundreds of unread

messages at a time. So anything that reduces the number of " noise "

messages would be an improvement.

2. I'd like to also propose asking subscribers to refrain from posting

" thank you " messages. I know this may seem like institutionalizing

rudeness. But this list has 2133 subscribers, so if each subscriber

were to each post just a single " thank you " message on the same day, we

would all get 2133 " junk " messages clogging our in boxes that day. Just

about everyone likes to here a " thank you " from time to time, but we can

mail our thank yous via personal email, so that they don't go out to

everyone on the list.

3. I'd like to encourage Ken to put chronic arguers on moderated

status. That would probably require some volunteer associate moderators

who could review the moderated messages. But, for me, this list has

become so bloated with endless arguing and off topic posts that the

noise has begun to drown out the signal.

Will in Seattle

a.k.a. " Sleepless "

P.S. If you support any of these proposals, please don't post a " me

too " message to the list, but rather, email Ken urging him to adopt

them. Maybe Ken could create a poll to get a sense of the group's

opinions on these proposals.

[Guest guest]

Sleepless in Seattle wrote:

1. I'd like to butt in here and propose that we ask list subscribers to

refrain from posting " me too " type messages.

***I want to hear EVERY " me too " message that is about a treatment. Those

words are sufficient if they are indicating the effect of a treatment. I am

always looking here for the voice of consensus.

Probably S-I-S didn't mean that, but just to be clear....

Adrienne

[Guest guest]

Adrienne G. wrote:

> Sleepless in Seattle wrote:

>

> 1. I'd like to butt in here and propose that we ask list subscribers to

> refrain from posting " me too " type messages.

>

> ***I want to hear EVERY " me too " message that is about a treatment.

> Those words are sufficient if they are indicating the effect of a

> treatment. I am always looking here for the voice of consensus.

>

> Probably S-I-S didn't mean that, but just to be clear....

> Adrienne

Good point! Thanks for making that distinction, Adrienne.

If a treatment works for you or if it causes you problems, then, of

course, a " me too " message is definitely helpful to us all.

The kinds of " me too " messages that I'd like to receive fewer of are the

ones that chime in on off topic arguments and disputes that have nothing

to do with treatments; saying things like " ditto " and " I agree. "

I think a good rule of thumb might be to to ask ourselves, " Am I posting

about my own experience with a treatment? " If the answer is " no " , then

perhaps this isn't the appropriate forum to posting in.

Will in Seattle

a.k.a. " Sleepless "