Jill: Treatment centric ....

[Guest guest]

Jill,

I agree that there is little on this list that was not of interest.

My concern is to keep the value in one specific area high and to

eliminate static. Thoughout the years, Laurie and I have gotten my

back-channel email praising the fact that this is NOT A SUPPORT GROUP

or a general purpose CFIDS discussion group. Many of these email cite

that the reader's limit is perhaps 10-20 emails a day and that they

appreciate the focus of the group.

Those individuals do not have the energy to go and find some place

else, they are often the worst cases of the CFIDSers, and often

wheelchair bound. It is this group that I have always been very

concerned about and hence my getting to be a stick in the mud about

keeping on target, and when needed (for example because of the sheer

volume of mail) narrowing the target.

Create a CFSFMEXPERIMENTALSOCIAL or CFSFMEXPERIMENTALSUPPORT if you

wish...

IMHO the group needs to get this board back to it's traditional

primary focus, NEW or NOVEL treatments which means just that. IMHO,

you cannot claim that " alternative " or " holistic " or " any treatment

not approved by the AMA " is Experimental --- because there are no

treatments that are approved! In which case, why have the

word " Experimental " -- the word experimental meant not " alternative "

but " experimental for alternative healers " - that is not tried and

tested.

> even when sometimes it got a bit strident (such as EMF's)

> > >

> > > As far as I can tell FFC treatments although a little more

common,

> > are FAR from non-experimental. If it is a settled verifiable

> > treatment, shouldn't the majority of us be rushing over there and

> > have our miseries ended? Or are they, over there, still

experimenting

> > with ending misery? If their treatments are a total failure

(not!)

> > then they are charlatans. If they are a total success, end of

story.

> > But they are experimenting, still. Do we now avoid all treatments

> > that a significant (?)number of people are dispensing or taking?

Huh?

> > > This seems a bit too structured.

> > > Adrienne

> > > MODERATOR: Treatment centric ....

> > >

> > >

> > > Discussing shampoos for hair and dying may be helpful for

some

> > > members -- but this is very much off topic.

> > >

> > > As a reminder for NEW MEMBERS --- this group is

> > >

> > > * EXPERIMENTAL TREATMENT orientated....

> > >

> > > and that means it is not about *conventional* treatment that

is

> > > generally known and practised by MD's familar with CFIDS.

> > >

> > > It can be tempting to try doing everything on one board...

CFSFM

> > > Experimental is NOT the board to do it on.

> > >

> > > This group is intended for those that have gone thru 2,3,4,5

or

> > more

> > > conventional treatment without success. If you are new to

> > treatment

> > > issues, there are many good books out there.

> > >

> > > I am about to create a seperate list CFSFMNONEXPERIMENTAL

> > >

> > > CFSFMNonExperimental

> > >

> > > This is an offshoot from for discussion by

> > those

> > > doing non-EXPERIMENTAL treatments - for example, From Fatigue

to

> > > Fantastic by Dr. Teitelbaum , or doing Fibromyalgia & Fatigue

> > > Centers, Inc.

> > >

> > > Please post in the appropriate group

> > >

> > >

> > >

> > >

> > >

> > >

> > > This list is intended for patients to share personal

experiences

> > with each other, not to give medical advice. If you are

interested

> > in any treatment discussed here, please consult your doctor.

> > >