Adrienne:- Working defintion of Experimental Treatment

[Guest guest]

Adrienne,

My role as a moderator is to keep the forum healthy and on track.

I will make calls -- people may disagree about them -- that is fine,

but don't expect to be successful in arguing points. I'm fully

recovered and run on high octane brain cells, so any one with active

CFIDS is automatically at a disadvantage...

The " 4 year rule " is a simple to understand item which is not

**subjective**. It is easy to see how long an approach has been

around (or discussed on this list: just search the archives!) -- if

an item has not shown clear definitive benefits in 4 years, then it

is probably INCONCLUSIVE.

There have been a growing number of backchanel email to me on issues

and concerns about the group -- the fact that there are 700 emails

many weeks (4x the weekly rate from 2 years ago), means 100 emails a

day!! Looking at the contents of many of the emails critically

(especially against contents from 2-3 years ago) reveal a lot of

unneeded noise...

What I am trying to do is move some of the discussions to

CFSFMNOTEXPERIMENTAL -- Protocols and Treatments that are over 4

years old, new members who have not read the archives (the first 3

months of this year had more posts than all of 2004) and keep the

posts on focused on new treatments and protocols...

The number of posts are simply too high and to much off topic stuff

for some people to handle... A democracy is successful not from the

obediance to the majority but in the care for the minority and the

weak.

As for Whey -- if a new form of whey comes along that is asserted to

be different, that's appropriate. Older forms, read the archives or

post on CFSFMNOTEXPERIMENTAL...

>

> so you don't want us to talk about whey on this forum anymore???

> What about other forms of enhancing glutathione?

> It is interesting that you make no comment at all on the whole

genetic pursuit.

>

> It seems to me a perfect example of the impossibility of clearly

defining " experimental, " since it is a new thing in its outlook, but

uses very little that is new as actual treatment, i.e., new

substances-or even ideas of biochemistry, Ken. Certainly the whole

idea of supplementation is now very mainstream.

>

> The new is never entirely novel, is always built upon what has been

established, so how do you talk about what is new without reference

to what is more known? This seems like a very artificial way to deal

with the wanderings of newcomers. And if you will look, there is

plenty of off-topic asides from old-timers.

>

> If it is very clear to you what is and is not experimental, fine,

but what if it is really not clear to us. You have been a little more

specific in your latest posts; are you going to spell it out for us;

this yes, but that no? What if I need to compare something old w.

something new in my post? I try to follow the rules- and I have

admittedly been complaining about those posts that say only " thanks, "

or " way to go! " or other total time wasters that could be sent

backchannel, but this is not the solution.

>

> I am definitely confused, and I bet I am not the only one.

> Thanks for all your efforts to ensure that something meaningful and

useful is going on here. My life would be entirely worse without this

forum. It has saved me much suffering already.

> Adrienne

> MODERATOR -- Working defintion

of " Experimental Treatment "

>

>

>

> The definition of " experimental " can be subjective -- the

definition

> that I would like to see used is:

>

> " A treatment whose results are speculated but for which there has

not

> been enough patient-experience to draw conclusions from " .

>

> As a working criteria -- any treatment protocol that is over FOUR

(4)

> years old is not experimental - unless it's a " forgotten or

ignored

> protocol " . Many of the protocol may be inconclusive (which is very

> different than experimental).

>

> * Some items that I would not deem experimental any longer:

>

> * Ampligen (see CFS-

Ampligen

> <CFS-Ampligen> - back to

2000)

> * Hemex / Anticoagulant treatment (it was first proposed in

late

> 1999, it was definitely experimental when I went on in early 2001.

> Today, it is not -- studies have been done and published, and I

> understand it's part of the standard package of tests at

Fibromyalgia &

> Fatigue Centers). (See atsg/

> <atsg/> bach to Oct 1999)

> * Antibiotics (Prof. Nicholson, Road Back, Jadin, etc) - many

many

> groups...

> * Non-denatued whey -- many many groups...

>

> There is an important line between experimental and " accepted "

> treatments.

>

> All of the above may not be accepted by conventional MD's who

will call

> them " experimental " , not because they are -- but because they are

not

> safe accepted " on-label " treatment. The term " experimental " is

used as

> an excuse to decline doing it until the medical establishment

> **accepts** it.

>

> There are also treatments that are " little known or poorly

documented "

> -- those I would allow to be called " experimental " because there

is not

> " enough patient-experience to draw conclusions from " -- the one

that

> comes to mind with the work of Hock in Germany with vitamin D

> supplementation which he reported major improvement from -- but

which

> studies have not been tried in the UK or US or ... to confirm or

> challenge the results of. In other words, results from one one

> MD/Researcher only with no experiences from others. It's over 4

years

> since the original results, but it never made it into " CFIDS main

> stream " for evaluation/experiences. It's revived at

> CFSProtocol

> <CFSProtocol> , which has

been

> going for 13 months only.

>

> On the other hand, vitamin B-12 supplementation is very

conventional and

> heavy mentioned in books and in many groups. That is not

experimental.

>

> * Some treatments that could be called experimental today are:

>

> * Salt/C (???? -- ) See

> Salt-n-C/

> <Salt-n-C/> for experiences

> * Blaisi Salts (Oct 2004 onwards -- so in 2 years it would

likely no

> longer qualify) See

> AlfredblasiprotocolFMSCFS

> <AlfredblasiprotocolFMSCFS>

for

> experiences...

> * MarshallProtocol.com -- still qualifies, but the results

have been

> so poor that there is almost no interest in (besides personality

> challenges involved), see

olmesartan/

> <olmesartan/> for experiences

>

> What are other **EXPERIMENTAL TREATMENTS** ???

>

> My goal is to shift discussion on the older treatments to

> CFSFMNONEXPERIMENTAL... for new members (with old timers can

contribute

> or point to archives here)..

>

> As this group grows larger, the volume of emails increases, and

the

> problem of keeping on target becomes more difficult.

>

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