MODERATOR -- Working defintion of Experimental Treatment

[Guest guest]

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.

[Guest guest]

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.

[Guest guest]

>>>>To us, many folks do not have the ability to handle a high volume of

extra stuff. We rule in favor of them.<<<<

I have seen no rulings on extremely high volume threads lately.

>>>>{list} not about *conventional* treatment that is generally known and

practised by MD's familar with CFIDS<<<<

MDs familiar with *CFIDS* are extremely rare, hardly " conventional " , and unknown

to most on this list.

These days, their thinking and protocols barely see the light of day here.

You now want to ban them officially??!!

>>>I have constantly created new lists dealing with

specific branches of treatment to facilitate this when they do not already

exist:<<<<

Isn't it past time to do that with Yasko topic?

>>>it is simply that when we get emails from long time members asking us to

take action or they will have to bail... that is a complaint that we

give weight to.<<<<.

>>>>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<<<<<

But you are sending them/US someplace else...for CFS *treatment* discussion

and that of CFS Specialists.

I don't believe that many will adhere to or even understand your personal

definitions of " experimental " .

The longest term CFIDS/CFS members of the list, those seeing CFS Specialists,

and the most ill have mostly been silenced here....by the dominent, cognitively

less impaired, less ill, and (your term) CFS " wastebasket " categories.

The former, and those related, have pleaded on board for their needs to be

discussed. Or posted valuable treatments to deaf ears.

I and others continually get backchannel posts wanting information on protocols

and severe symptoms of ME/CFIDS/CFS.

The most ill are driven to isolation or an underground, which is extremely

draining.

In addition you've ruled against people specifying WHAT DISEASE they are

discussing among all under the CFS umbrella. Which can range from psych,

stress/fatigue, general unwellness, to ORGAN FAILURE.

THis hardly defers to the most ill, who clearly believe they are getting advice

from knowledgable " experts " here.

>>>>We made rulings long ago to favor those that have very low cognitive

endurance and energy on this board.<<<<

>>>>democracy is successful not from the obediance to the majority but in the

care for the minority and the

weak.<<<<

>>>>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.<<<<<.

This last statement hardly seems congruent with the previous 2.

Katrina

>

>

> 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.

>

>

>

>

>

>

>

>

>

>