What happened here

[Guest guest]

Stick around You'll get your group back!!! We're trying to take those

conversations to the group they belong to....what happened was, an individual

got very testy with the researcher. then left the membership I think. Said

researcher to protect himself had to back away from his input, at the time he

was very busy writing his protocol ideas and so, we don't hear so much from him

now. The moderator doesn't frequent our neck of the woods so often and those

two situations have left us a little high and dry here.

I apologize for my part in the decline. I am not scientifically minded. Much

of the desired content here goes over my head. My ability to contribute is nil

as far as experimental treatment goes. In fact, I have had difficulty trying to

sort out what fits and what doesn't on this list if we went exactly by the

established rules.

the bigger problem is that we lost the input of the researcher. Maybe. And

without the oversight of the moderate things have gotten a little loose here.

You'll all get it back together though. There are enough members here that

appreciate the experimental realm and can think and talk on that level, to get

it back to the forum you want it to be.

I'll go back into lurkdom now.

Diane in MI

Re: for those wanting support

No offense, but I dropped in to see what was the latest buzz after a

difficult couple of months healthwise, and suddenly found I couldnt

find any mention of experimental treatments here at all!

Quite suddenly there was a new rather cliquey atmosphere, seemingly

the same few people chatting to each other about their religious

beliefs and other mundane subjects.

This used to be a terrific place, always active, full of intelligent

people, brilliant conversations, even posts by researchers and

doctors regularly appeared, you could ask a question on here about

anything related to experimental treatments, such as glutathione for

instance, and get a reply not just from knowlegable members but also

from at least one expert on the subject...

Yet in the period of a few short weeks it seemed to me that all the

intelligent stuff and useful information about experimental

treatments that made this group so fascinating and unique, in short

everything I had liked about this place had apparently been squeezed

off the site.

I dont know if something has happened to the moderator, but I think

that something must have gone badly wrong because this did not used

to be a support group and anything not related to experimental

treatments used to have to be labelled as " off topic " so that people

interested in experimental treatments could read about what

interested them instead of wading through a lot of unrelated gossip.

I have got nothing against support groups, for people who are

housebound they are a necessity for some, but my deep disappointment

was because there are tons of CFS ME support groups everywhere but

there has always only been one cfs me experimental, it was unique and

in my opinion, brilliant, and thats the only reason why I was a

member here for so long.

To be completely honest I am not sure why I would be interested in

remaining a member here if it has become a support group for

religious people, and all the posts are going to be from the same

bunch of people who all seem to know each other, and I am sure that I

am not the only long standing member of cfsmexperimental who feels

the same way; so perhaps thats why everyone else has gone?

> >

> >

> > Bernie,

> > The messages have been a little softer lately, not just this past

> > week but since I have been back on. I am disappointed in all of

> the

> > splinter groups as that seems to be what has changed this list

> > (except for support - I'm okay with not not being here). Where

did

> > everyone go?

> >

> >

> > I got very few hits on the town study - not even discussion

> of

> > what they were looking for. No one has asked what I learned or

if

> I

> > thought it was beneficial.

> >

> > While I prefer this group remain experimental, if those looking

for

> > support leave, who will be left?

>

>

> ***Hi Marti - It is unfortunate that we lost a lot of members to

the

> CFSYasko group. I would have preferred that the conversation have

> stayed at this site. Unfortunately, a lot of people didn't agree

and

> therefore, Ken started another group.

>

> I for one am very interested in the outcome of your town

study.

> I assumed that you didn't have any results yet, and that when you

> did, you would advice us of the outcome.

>

> Take care.

> Bernie

>

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