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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

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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.

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Given the current state of treaments/science, it seems that everything

is experimental right now.

- Bob Niederman

On 7/29/06, Adrienne G. <duckblossm@...> wrote:

>

> 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?

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FFC is a chain of operations that are applying the results of the

last few years of research and treatment to patients. I understand

that they do a shotgun approach for testing (coagulation, infections

etc) -- in short, they have consolidated and packaged the

promising " experimental treatment " that have some positive results.

In short, " here's a list of things that people have found worked on

some, we will test everything and imitate the treatments that have

had positive results where appropriate " .

The issue is " experimental " versus " accepted " versus " alternative "

versus " off-label " . One could state that experimental means any

treatment that is not listed on eMedicine.com for CFIDS - including

ones that have been tried for 20 years... in which case, what is the

differentiator between this list and ANY CFIDS list?

This list is known for discussion of new or novel treatments, perhaps

CFSFMNewTreatments would be a better name -- but it is not just new

treatment, but new treatments that we are unsure of their

effectiveness because they are experimental ...

>

> 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.

>

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Sorry about the hair dye, but actually it was a really useful tidbit

of information for me. It may seem superfluous or specious, but I've

said before, how we look affects how others treat us which affects our

mood, our hope, our energy, everything. So hair dye is very important

to some of us, and toxic hair dye no good. It's not a treatment for

CFIDs, but an adaptation to life with health issues...anyway, I'm glad

at the confirmation on NaturColor...I had chosen that anyway as a

friend uses it...didn't mean to get too far off topic.

I too am not sure exactly what is experimental...if they find a new

logic, for instance, for an older treatment, would that be worth

discussing? I've found little on this list that was not of interest

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.

> >

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