Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 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? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 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. > > Quote Link to comment Share on other sites More sharing options...
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