Re: Someone asked about the MP?

[Guest guest]

If indeed the FDA has approved a phase 2 trial based on a website

message board this will be the travesty of all time. There is no way

regulatory guidelines could be met in such a situation. In particular

the law requires that all adverse events be immediately reported to

the FDA. Who is even going to know what adverse events occured on

that message board. I mean someone could die and just disappear from

the board and who the heck would know? Here is the link to guidelines

on phase 2 studies.

http://grants.nih.gov/grants/guide/notice-files/NOT-OD-00-038.html

Amy I hope you are still reading here, because you need a rude

awakening. You are young and do not realize how bad the world can

get. I don't know what your education is. Did you study biology or

any science? Do you know anything about the business of medicine or

medical research. It is a complex mess taking years and years to

approve things.

I suppose you could say that the drugs used on the MP are already

approved the the DOSES and schedule are NOT. Did you just read the

post about the Lyme specialist who is in trouble for doing what

hundreds of other docs are doing? He got suspended for a year. Do not

assume others are not vulnerable.

Medicine is a dangerous business with both patients and doctors at

risk.

a Carnes

>

> Um, can someone bring me up to speed? What is this about a phase 2

> study with the FDA based on people's reports posted on an internet

> website? The FDA actually approved such as study with no MD

> oversight? I find that bizarre to say the least.

>

> I also find it bizarre that Amy thinks we need to ask her about

this

> treatment.

>

> It seems to me that I wrote the book on it and signed my name too.

> But y'all don't want to ask me questions about it since I jumped

> ship. Only those totally committed have the right to tell folks

about

> the treatment, right? Of course, right.

>

> a Carnes

>

>

> >

> > Hi Barb,

> >

> > Thank you for your concern. I write my posts on the MP website

> under

> > a screename with no connection to my real name. I know I am

putting

> > myself at some risk my writing on immunesupport.com etc, but I

feel

> > that I cannot sit silently with so many reflections on my

treatment

> > when there are so many people ill with CFS who deperately need

> > feedback from an honest person actually doing the MP. I am

putting

> > myself out there for the CFS community - because I don't think

> people

> > who are developing CFS or are sick at the moment should suffer

the

> way

> > I did before I found the MP. People on this board keep talking

> about

> > how the MP board is so " secretive " . Well that's because just as

you

> > say, people don't want their medical details all over the web!

I'm

> > willing to put out some of mine for better or for worse because I

> > think people need to hear about how the MP has changed my health

for

> > the better.

> >

> > In case you need to me say it, yes, I wrote every single sentence

of

> > both the pieces I wrote on Immunsupport.com on my own. Neither

Dr.

> > Marshall nor the moderators had any say whatsoever in what I

wrote

> in

> > the pieces. They have never once even suggested that I write the

> > work, that they edit it, or that they look at it before

> publication.

> > I take credit for every word in each piece.

> >

> > It's also really important to understand that the progress reports

> > from people in the Phase 2/3 forum are the basis of a Phase II

study

> > trial with the FDA. You guys seem to really want to hear studies

> > about the MP...well these reports ARE a study in themselves. The

> FDA

> > definitely needs to hear my feedback (as well as the feedback of

> > everyone else on the treatment) That is also why I post my

progress

> > on the site.

> >

> > The claims made here are a bit ridiculous. The MP isn't a cult,

and

> > nobody has to sign disclaimers about anything in order to be on

the

> > MP.

> >

> > This will be my last post on this site. Please send any questions

> > related to the treatment (as opposed to the politics of it) to my

> > personal e mail. Those I will be happy to answer... in due time,

> that

> > is. I am still recovering and my sister's in town.

> >

> > Amy

> >

>

[Guest guest]

An "FDA study"? Funded by the FDA???? No way will I, or any researchers I respect, believe a study where people are kicked out of it if their reactions don't comply. I'm sorry but it's incredibly naive to believe that "secrecy" that's being practiced is to protect people's "privacy". You keep forgetting, we've been there and know what we're talking about. We know how every person's words and possible motives are anyalyzed and what the response should be. We know the paranoia that drives things over there. Your arguments might work on the unsuspecting, but not on those who've been on the inside as quite a few of us have. I'm sorry if I posted something that you thought was private. I wouldn't normally do so. But it was sent to me in my own email and nothing was said about it being "private". Just that it was a post from

another forum that I'm not a member of. We copy other people's posts on these forums all the time, and I've learned from investigating that it doesn't matter where you post on the internet, it's considered public. Even your own email. As a matter of fact, the person who sued me, tried to do so using private emails between me and someone else which they forwarded to him. And for those who find that appalling, believe me, it was a common practice over there when we were all there. "amy.proal" <amy.proal@...> wrote:

It's also really important to understand that the progress reportsfrom people in the Phase 2/3 forum are the basis of a Phase II studytrial with the FDA. ...well these reports ARE a study in themselves. The FDAdefinitely needs to hear my feedback (as well as the feedback ofeveryone else on the treatment) That is also why I post my progresson the site. .

[Guest guest]

Penny,

Even if someone doesn't forward your email, it still isn't secure.

Unless you use encryption and certificates -- which virtually no one

does in practice -- your emails travel the Internet from server to

server in plain text. I am the admin on a couple of different mail

servers, and if I wanted to, I could read every mail that passes

through the machine. If system admins were not so busy, and the bulk

of emails were not so banal, the profession would be heaven for voyeurs.

By tonight this very email will probably be in ten different places and

on a couple of backup tapes, someplace in the world. In the usual case

only those who care will ever actually lay eyes on it ... but that's

just the point. If someone wants to know what you say they can

subpoena the hosting service for all your communications and it's far

easier for the hosting service to comply than to fight it.

The same goes for web-based forums ... every time someone reads a

"private" post using their web browser, the post travels the Internet

in plain text. It enjoys a degree of "security" by virtue of its being

a needle in a haystack of traffic, but in principle, anyone with a

packet sniffer can look at it, and anyone with access to the web or

database servers can, too.

--Bob

Penny Houle wrote:

An "FDA study"? Funded by the FDA????

No way will I, or any researchers I respect, believe a study

where people are kicked out of it if their reactions don't comply.

I'm sorry but it's incredibly naive to believe that "secrecy"

that's being practiced is to protect people's "privacy".

You keep forgetting, we've been there and know what we're

talking about. We know how every person's words and possible motives

are anyalyzed and what the response should be. We know the paranoia

that drives things over there. Your arguments might work on the

unsuspecting, but not on those who've been on the inside as quite a few

of us have.

I'm sorry if I posted something that you thought was private. I

wouldn't normally do so. But it was sent to me in my own email and

nothing was said about it being "private". Just that it was a pos t

from another forum that I'm not a member of. We copy other people's

posts on these forums all the time, and I've learned from investigating

that it doesn't matter where you post on the internet, it's considered

public. Even your own email. As a matter of fact, the person who sued

me, tried to do so using private emails between me and someone else

which they forwarded to him. And for those who find that appalling,

believe me, it was a common practice over there when we were all there.

"amy.proal" <amy.proal > wrote:

It's also really important to understand that the progress reports

from people in the Phase 2/3 forum are the basis of a Phase II study

trial with the FDA. ...well these reports ARE a study in themselves.

The FDA

definitely needs to hear my feedback (as well as the feedback of

everyone else on the treatment) That is also why I post my progress

on the site.

..

[Guest guest]

Since you are not posting any more here - this will also be my last

post for you (as I am nbanned from the site you refer to.

If you wrote your own article, then it's apparent the core group has

gotten over some of their need to rewrite an authors article. That's

progress in the right direction.

I would be very interest to know how you are doing a year from now -

so if it's possible I'll contact you then (if you still have a

account- I will email you at that address.

You are certainly not the first person that's written in defense of

that protocol, and the ones who have come before you never reported

after they left the group.

So.. if possible.. I'd like a report on your progress in a year.

SO.. good luck with it- I always hope people improve - no matter what

protocol they're on..

(But as I said.. the " Bad Taste " is still in my mouth regarding

the 'Core Group' and their tactits.). Obviously you haven't

experienced them - yet.

Regards,

Barb

>

> Hi Barb,

>

> Thank you for your concern. I write my posts on the MP website

under

> a screename with no connection to my real name. I know I am putting

> myself at some risk my writing on immunesupport.com etc, but I feel

> that I cannot sit silently with so many reflections on my treatment

> when there are so many people ill with CFS who deperately need

> feedback from an honest person actually doing the MP. I am putting

> myself out there for the CFS community - because I don't think

people

> who are developing CFS or are sick at the moment should suffer the

way

> I did before I found the MP. People on this board keep talking

about

> how the MP board is so " secretive " . Well that's because just as you

> say, people don't want their medical details all over the web! I'm

> willing to put out some of mine for better or for worse because I

> think people need to hear about how the MP has changed my health for

> the better.

>

> In case you need to me say it, yes, I wrote every single sentence of

> both the pieces I wrote on Immunsupport.com on my own. Neither Dr.

> Marshall nor the moderators had any say whatsoever in what I wrote

in

> the pieces. They have never once even suggested that I write the

> work, that they edit it, or that they look at it before

publication.

> I take credit for every word in each piece.

>

> It's also really important to understand that the progress reports

> from people in the Phase 2/3 forum are the basis of a Phase II study

> trial with the FDA. You guys seem to really want to hear studies

> about the MP...well these reports ARE a study in themselves. The

FDA

> definitely needs to hear my feedback (as well as the feedback of

> everyone else on the treatment) That is also why I post my progress

> on the site.

>

> The claims made here are a bit ridiculous. The MP isn't a cult, and

> nobody has to sign disclaimers about anything in order to be on the

> MP.

>

> This will be my last post on this site. Please send any questions

> related to the treatment (as opposed to the politics of it) to my

> personal e mail. Those I will be happy to answer... in due time,

that

> is. I am still recovering and my sister's in town.

>

> Amy

>

[Guest guest]

I think what it means is really entirly different that the message it

gives.

What it really means is that the drugs they use are FDA approved..

not that the protocol per se is approved by the FDA.... deception at

it's best.

If I'm wrong on that- please someone correct me..

Barb

>

> Um, can someone bring me up to speed? What is this about a phase 2

> study with the FDA based on people's reports posted on an internet

> website? The FDA actually approved such as study with no MD

> oversight? I find that bizarre to say the least.

>

> I also find it bizarre that Amy thinks we need to ask her about

this

> treatment.

>

> It seems to me that I wrote the book on it and signed my name too.

> But y'all don't want to ask me questions about it since I jumped

> ship. Only those totally committed have the right to tell folks

about

> the treatment, right? Of course, right.

>

> a Carnes

>

>

> >

> > Hi Barb,

> >

> > Thank you for your concern. I write my posts on the MP website

> under

> > a screename with no connection to my real name. I know I am

putting

> > myself at some risk my writing on immunesupport.com etc, but I

feel

> > that I cannot sit silently with so many reflections on my

treatment

> > when there are so many people ill with CFS who deperately need

> > feedback from an honest person actually doing the MP. I am

putting

> > myself out there for the CFS community - because I don't think

> people

> > who are developing CFS or are sick at the moment should suffer

the

> way

> > I did before I found the MP. People on this board keep talking

> about

> > how the MP board is so " secretive " . Well that's because just as

you

> > say, people don't want their medical details all over the web!

I'm

> > willing to put out some of mine for better or for worse because I

> > think people need to hear about how the MP has changed my health

for

> > the better.

> >

> > In case you need to me say it, yes, I wrote every single sentence

of

> > both the pieces I wrote on Immunsupport.com on my own. Neither

Dr.

> > Marshall nor the moderators had any say whatsoever in what I

wrote

> in

> > the pieces. They have never once even suggested that I write the

> > work, that they edit it, or that they look at it before

> publication.

> > I take credit for every word in each piece.

> >

> > It's also really important to understand that the progress reports

> > from people in the Phase 2/3 forum are the basis of a Phase II

study

> > trial with the FDA. You guys seem to really want to hear studies

> > about the MP...well these reports ARE a study in themselves. The

> FDA

> > definitely needs to hear my feedback (as well as the feedback of

> > everyone else on the treatment) That is also why I post my

progress

> > on the site.

> >

> > The claims made here are a bit ridiculous. The MP isn't a cult,

and

> > nobody has to sign disclaimers about anything in order to be on

the

> > MP.

> >

> > This will be my last post on this site. Please send any questions

> > related to the treatment (as opposed to the politics of it) to my

> > personal e mail. Those I will be happy to answer... in due time,

> that

> > is. I am still recovering and my sister's in town.

> >

> > Amy

> >

>

[Guest guest]

Studies have to be approved by the FDA. It is possible that

this " study " was approved to go forward because the drugs used are

already approved. This does not mean the FDA is funding the study,

just that papers have been filed and the study approved to go

forward.

Of course, if it was approved this is very disturbing because there

is no medical oversight of these patients using these drugs,

especially Benicar at these high doses. I would love to see a study

go forward, but not based on a message board on the internet with

people like us getting banned. That is so absurd it is laughable - if

it weren't so dangerous.

a Carnes

>

> I think what it means is really entirly different that the message

it

> gives.

>

> What it really means is that the drugs they use are FDA approved..

> not that the protocol per se is approved by the FDA.... deception

at

> it's best.

>

> If I'm wrong on that- please someone correct me..

>

> Barb

>

>

> >

> > Um, can someone bring me up to speed? What is this about a phase

2

> > study with the FDA based on people's reports posted on an

internet

> > website? The FDA actually approved such as study with no MD

> > oversight? I find that bizarre to say the least.

> >

> > I also find it bizarre that Amy thinks we need to ask her about

> this

> > treatment.

> >

> > It seems to me that I wrote the book on it and signed my name

too.

> > But y'all don't want to ask me questions about it since I jumped

> > ship. Only those totally committed have the right to tell folks

> about

> > the treatment, right? Of course, right.

> >

> > a Carnes

> >

> >

> > >

> > > Hi Barb,

> > >

> > > Thank you for your concern. I write my posts on the MP website

> > under

> > > a screename with no connection to my real name. I know I am

> putting

> > > myself at some risk my writing on immunesupport.com etc, but I

> feel

> > > that I cannot sit silently with so many reflections on my

> treatment

> > > when there are so many people ill with CFS who deperately need

> > > feedback from an honest person actually doing the MP. I am

> putting

> > > myself out there for the CFS community - because I don't think

> > people

> > > who are developing CFS or are sick at the moment should suffer

> the

> > way

> > > I did before I found the MP. People on this board keep talking

> > about

> > > how the MP board is so " secretive " . Well that's because just

as

> you

> > > say, people don't want their medical details all over the web!

> I'm

> > > willing to put out some of mine for better or for worse because

I

> > > think people need to hear about how the MP has changed my

health

> for

> > > the better.

> > >

> > > In case you need to me say it, yes, I wrote every single

sentence

> of

> > > both the pieces I wrote on Immunsupport.com on my own. Neither

> Dr.

> > > Marshall nor the moderators had any say whatsoever in what I

> wrote

> > in

> > > the pieces. They have never once even suggested that I write

the

> > > work, that they edit it, or that they look at it before

> > publication.

> > > I take credit for every word in each piece.

> > >

> > > It's also really important to understand that the progress

reports

> > > from people in the Phase 2/3 forum are the basis of a Phase II

> study

> > > trial with the FDA. You guys seem to really want to hear

studies

> > > about the MP...well these reports ARE a study in themselves.

The

> > FDA

> > > definitely needs to hear my feedback (as well as the feedback of

> > > everyone else on the treatment) That is also why I post my

> progress

> > > on the site.

> > >

> > > The claims made here are a bit ridiculous. The MP isn't a

cult,

> and

> > > nobody has to sign disclaimers about anything in order to be on

> the

> > > MP.

> > >

> > > This will be my last post on this site. Please send any

questions

> > > related to the treatment (as opposed to the politics of it) to

my

> > > personal e mail. Those I will be happy to answer... in due

time,

> > that

> > > is. I am still recovering and my sister's in town.

> > >

> > > Amy

> > >

> >

>

[Guest guest]

Amy

We've been discussing how important age is to this group of diseases

as well as how aggresive treatments should be.You sound like your in

the paris hilton age group and we alway's felt people would easily

get into remission if they where young enough.As a matter of fact a

close friend from another forum actually felt cured for a while like

yourself only to relapse after stopping her antimicrobials.The mp

that you praise hasn't really got to many oldies screaming from the

rafters.Also we don't have a problem with beleiving anything- but the

show me the money KICK ASS aspect part of the treatment, stinks to

high heaven.

Also- I have an aunty that's gained weight on sartins, developed

numerous lung infections that saw her on two years on and off

antimicrobials and she's also developed lower back pain that's

getting worse with ct scanning every year that's also disabled a live

wire person and put her on morphine.

There's a problem believeing that infections that hijack the immune

system are going to respond to ideologies that claim to repair the

hijacked immune system.Basically all you can do is make the immune

system fill more with infection if you got that part working- IS THIS

SMART?

Also I hope your sex discussion is while on the MP not with the MP.(

I don't fancy that thought)

tony

>

> Hi Barb,

>

> Thank you for your concern. I write my posts on the MP website

under

> a screename with no connection to my real name. I know I am putting

> myself at some risk my writing on immunesupport.com etc, but I feel

> that I cannot sit silently with so many reflections on my treatment

> when there are so many people ill with CFS who deperately need

> feedback from an honest person actually doing the MP. I am putting

> myself out there for the CFS community - because I don't think

people

> who are developing CFS or are sick at the moment should suffer the

way

> I did before I found the MP. People on this board keep talking

about

> how the MP board is so " secretive " . Well that's because just as you

> say, people don't want their medical details all over the web! I'm

> willing to put out some of mine for better or for worse because I

> think people need to hear about how the MP has changed my health for

> the better.

>

> In case you need to me say it, yes, I wrote every single sentence of

> both the pieces I wrote on Immunsupport.com on my own. Neither Dr.

> Marshall nor the moderators had any say whatsoever in what I wrote

in

> the pieces. They have never once even suggested that I write the

> work, that they edit it, or that they look at it before

publication.

> I take credit for every word in each piece.

>

> It's also really important to understand that the progress reports

> from people in the Phase 2/3 forum are the basis of a Phase II study

> trial with the FDA. You guys seem to really want to hear studies

> about the MP...well these reports ARE a study in themselves. The

FDA

> definitely needs to hear my feedback (as well as the feedback of

> everyone else on the treatment) That is also why I post my progress

> on the site.

>

> The claims made here are a bit ridiculous. The MP isn't a cult, and

> nobody has to sign disclaimers about anything in order to be on the

> MP.

>

> This will be my last post on this site. Please send any questions

> related to the treatment (as opposed to the politics of it) to my

> personal e mail. Those I will be happy to answer... in due time,

that

> is. I am still recovering and my sister's in town.

>

> Amy

>

[Guest guest]

Well, it only took some of you in this group two days to drive Amy

away. You said it's bizarre when she kindly offers to answer

questions. You accused her of lying. You told her she is a cult

member. You told her she is naïve. You implied many other insults. I

certainly don't blame her for leaving.

FWIW, I think her degree is in biology; her doctor is a well-known

CFS specialist.

As for those few of you who have been banned from the MP web site, it

seems to me that anybody can read the MP web site from a computer

someplace else like a local library. You might consider getting up-to-

date a little with what is on the web site. Some of your statements

and speculations are off the mark.

You can go ahead and bitch at me for writing this. I've learned it's

best not to respond. Besides, it's my birthday and things don't

bother me as much on my birthday. As usual for the last 36

birthdays, I will wish for a cure for CFS, and more recently I also

remember my CFS friends who are dead. Early CFS activism was

hazardous to health. I think people who are taking part in treatment

trials that have a chance of advancing knowledge and saving people

should get a little respect, but that is just my opinion.

Roy

<amy.proal@...> wrote:

>

> This will be my last post on this site. Please send any questions

> related to the treatment (as opposed to the politics of it) to my

> personal e mail. Those I will be happy to answer... in due time,

that

> is. I am still recovering and my sister's in town.

>

> Amy

>

[Guest guest]

Roy,

I don't even know where to begin, happy birthday, I guess.

Will you post an objective question you have regarding the MP?

On a personal note, I am able to read the MP website, but I cannot

post there, nor can I read the phase 2 and 3 message board even

though I was on phase 3 when I was banned. I used to be allowed to

read the professional MP board until I asked the wrong questions.

Fortunately I am personally acquainted with and respected by several

of the MDs who use the MP. I want to state again that I NEVER POST

ANONYMOUSLY ON THE INTERNET, NEVER. AND I NEVER GO TO A WEBSITE

WITHOUT IDENTIFYING MYSELF, AND, YES, I AM YELLING. THIS IS A VERY

DEEPLY HELD MORAL OBLIGATION OF MINE.

You do realize that Penny here was taken to court???? You may not

realize that I was a pawn in that " game " and my posts were going to

be used to HURT HER. I also was insulted when I was told I was in a

cult. Now, in hindsight, I totally concur that, for a time, I was in

a cult. I have apologized to Penny and will do so again now on this

list. She did not deserve the dastardly treatment she got.

Again, happy birthday to you. And may you live many more years in

good health. Whatever part of the MP improves your health I wish you

THE BEST.

a Carnes

Las Vegas, NV

>

> Well, it only took some of you in this group two days to drive Amy

> away. You said it's bizarre when she kindly offers to answer

> questions. You accused her of lying. You told her she is a cult

> member. You told her she is naïve. You implied many other insults.

I

> certainly don't blame her for leaving.

> FWIW, I think her degree is in biology; her doctor is a well-known

> CFS specialist.

>

> As for those few of you who have been banned from the MP web site,

it

> seems to me that anybody can read the MP web site from a computer

> someplace else like a local library. You might consider getting up-

to-

> date a little with what is on the web site. Some of your

statements

> and speculations are off the mark.

>

> You can go ahead and bitch at me for writing this. I've learned

it's

> best not to respond. Besides, it's my birthday and things don't

> bother me as much on my birthday. As usual for the last 36

> birthdays, I will wish for a cure for CFS, and more recently I also

> remember my CFS friends who are dead. Early CFS activism was

> hazardous to health. I think people who are taking part in

treatment

> trials that have a chance of advancing knowledge and saving people

> should get a little respect, but that is just my opinion.

> Roy

>

> <amy.proal@> wrote:

> >

> > This will be my last post on this site. Please send any questions

> > related to the treatment (as opposed to the politics of it) to my

> > personal e mail. Those I will be happy to answer... in due time,

> that

> > is. I am still recovering and my sister's in town.

> >

> > Amy

> >

>

[Guest guest]

That's a bit extreme, Roy. I don't think anyone accused her of lying. If people sound a bit ardent, it's because it's alarming how uninformed some people are about what's really going on and we're sincerely concerned for those people's well being. Plus, I have no big interest in reading the same white-washed stuff over there. I already know that anything controversial or potentially critical will be removed (and the problem poster discussed at length behind the scenes) so what good is it? It provides me with absolutely nothing, because I can't rely on information that is so one sided. The very thought that a study conducted under those conditions will ever be taken seriously is incredible. I also know from experience that every time one of the "enemy" visits that site, it's noted, and I don't really care to be noted. It creeps me out. Some people visit

through a proxy site, but I don't want to bother playing games just to get information from a tightly controlled website that edits all of its publicly viewable information anyway. Happy birthday, and thanks for the years of activism. It is appreciated. I just hope you will be careful what you decided to support in the future. penny p.s. Thanks to a. I was there and do understand how things were able to get to that point, despite how crazy it seems in hindsight. pjeanneus <pj7@...> wrote: Roy, I don't even know where to begin, happy birthday, I guess.Will you post an objective question you have regarding the MP? On a personal note, I am able to read the MP website, but I cannot post there, nor can I read the phase 2 and 3 message board even though I was on phase 3 when I was banned. I used to be allowed to read the professional MP board until I asked the wrong questions. Fortunately I am personally acquainted with and respected by several of the MDs who use the MP. I want to state again that I NEVER POST ANONYMOUSLY ON THE INTERNET, NEVER. AND I NEVER GO TO A WEBSITE WITHOUT IDENTIFYING MYSELF, AND, YES, I AM YELLING. THIS IS A VERY DEEPLY HELD MORAL OBLIGATION OF MINE. You do realize that Penny here was taken to court???? You may not realize that I was a

pawn in that "game" and my posts were going to be used to HURT HER. I also was insulted when I was told I was in a cult. Now, in hindsight, I totally concur that, for a time, I was in a cult. I have apologized to Penny and will do so again now on this list. She did not deserve the dastardly treatment she got.Again, happy birthday to you. And may you live many more years in good health. Whatever part of the MP improves your health I wish you THE BEST.a CarnesLas Vegas, NV>> Well, it only took some of you in this group two days to drive Amy > away. You said it's bizarre when she kindly offers to answer > questions. You accused her of lying. You told her she is a cult > member. You told her she is naïve. You implied many other insults. I > certainly don't blame her for leaving. > FWIW, I think her degree is in biology; her doctor is a well-known > CFS

specialist.> > As for those few of you who have been banned from the MP web site, it > seems to me that anybody can read the MP web site from a computer > someplace else like a local library. You might consider getting up-to-> date a little with what is on the web site. Some of your statements > and speculations are off the mark.> > You can go ahead and bitch at me for writing this. I've learned it's > best not to respond. Besides, it's my birthday and things don't > bother me as much on my birthday. As usual for the last 36 > birthdays, I will wish for a cure for CFS, and more recently I also > remember my CFS friends who are dead. Early CFS activism was > hazardous to health. I think people who are taking part in treatment > trials that have a chance of advancing knowledge and saving people > should get a little respect, but that is just my

opinion. > Roy> > <amy.proal@> wrote:> > > > This will be my last post on this site. Please send any questions> > related to the treatment (as opposed to the politics of it) to my> > personal e mail. Those I will be happy to answer... in due time, > that> > is. I am still recovering and my sister's in town.> > > > Amy> >>

[Guest guest]

Roy's talking about me.

I'm sure Amy can handle herself.. which she did nicely.

I decided not to respond to Roy.. because he didn't seem to be

understanding the explanations from myself, Penny and a about

what happened before.. (before Roy and AMy ever became involved with

that protocol.)

Barb

> >

> > This will be my last post on this site. Please send any questions

> > related to the treatment (as opposed to the politics of it) to my

> > personal e mail. Those I will be happy to answer... in due time,

> that

> > is. I am still recovering and my sister's in town.

> >

> > Amy

> >

>

[Guest guest]

Hi,

This is Beauty, or b4jcll or whatever I’m signed in as.

Do ya’ll always have this much drama

in this

group?

It is positively uncalled for, and for each person

that

causes it or participates in it, they should be

warned

once outside the group, then if it keeps up

banned.

I mean people, people are sick in this group,

and

cannot believe what I am seeing everyday. There

about

5 of you that would gone if you were in mine.

MSN

won’t tolerate stuff like that. The group leaders

For

the most part do not have to worry about it. All of you

should be ashamed of yourselves and also for

Mistreating

someone who is ill, and also, not having

Respect

for the Owner/Manager of the group and

Moderators.

Anyway, that is my opinion and you guys

do

what you want, but this is not obviously working

the

way it seems the rules are now. I pray that things

change.

Blessings †~~Beauty

there before

the grace of God go I..........

This email is

protected by the very latest 2007 Nortons Symantec Internet Security

[Guest guest]

Beauty,

We have known each other a LONG time over a lot of trauma. We are

fine and still care for each other. Just look at us as a bunch of

crazy Italians who are a family. That will be the truth even if none

of us are Italians.

a

>

>

>

> Hi, This is Beauty, or

b4jcll or

> whatever I'm signed in as.

>

> Do ya'll always have this much drama in this

>

> group? It is positively

uncalled

> for, and for each person

>

> that causes it or

participates in

> it, they should be

>

> warned once outside the

group,

> then if it keeps up

>

> banned. I mean people,

people are

> sick in this group,

>

> and cannot believe what I

am

> seeing everyday. There

>

> about 5 of you that would

gone if

> you were in mine.

>

> MSN won't tolerate stuff

like

> that. The group leaders

>

> For the most part do not

have to

> worry about it. All of you

should be

> ashamed of yourselves and also for

>

> Mistreating someone who

is ill,

> and also, not having

>

> Respect for the

Owner/Manager of

> the group and

>

> Moderators. Anyway, that

is my

> opinion and you guys

>

> do what you want, but

this is not

> obviously working

>

> the way it seems the

rules are

> now. I pray that things

>

> change. Blessings

†~~Beauty

>

>

>

> there before the grace of God go I..........

>

>

>

>

>

> This email is protected by the very latest 2007 Nortons Symantec

Internet

> Security

>

[Guest guest]

Hi Beauty, Penny here. I'm the list owner. I'd try to help, but I'm afraid I'm not exactly sure what it is that you're concerned about. We have a policy of no censorship (unless it's absolutely necessary). Naturally, people sometimes get offended or touchy about certain topics. Unfortunately, what offends one person, doesn't offend the next, thus the decision to not practice censorship. There are quite a few very intelligent people on this list. So far, we've managed to handle our differing opinions and posting styles with very little problem. For those people who aren't comfortable with this kind of list, there are plenty of lists out there with heavy moderation. Anyway, if there's anything I can clear up for you, just ask. pennyDoe Serena Cochran

<dscochran1@...> wrote: Hi, This is Beauty, or b4jcll or whatever I’m signed in as. Do ya’ll always have this much drama in this group? It is positively uncalled for, and for each person that causes it or participates in it, they should be warned once outside the group, then if it keeps up banned. I mean people, people are sick in this group, and cannot believe what I am seeing everyday. There about 5 of you that would gone if you were in mine. MSN won’t tolerate stuff like that. The group leaders For the most part do not have to worry about it. All of

you should be ashamed of yourselves and also for Mistreating someone who is ill, and also, not having Respect for the Owner/Manager of the group and Moderators. Anyway, that is my opinion and you guys do what you want, but this is not obviously working the way it seems the rules are now. I pray that things change. Blessings †~~Beauty there before the grace of God go I.......... This email is protected by the very latest 2007 Nortons Symantec Internet Security

[Guest guest]

Dear Penny

Just some moral support. As a list owner and moderator of another list, I found myself sitting around a conference table with a flamer who I had allowed to self incinerate. For everyone else, it was a potentially tense moment but then the reality struck home, face to face our interchange was polite and constructive.

We have all learned to metaphorically put our fingers in out ears at times but are grateful for the outcome which is a knowledge base built on rock.

Regards

Windsor

Re: [infections] Re: Someone asked about the MP?

Hi Beauty,

Penny here. I'm the list owner.

I'd try to help, but I'm afraid I'm not exactly sure what it is that you're concerned about. We have a policy of no censorship (unless it's absolutely necessary). Naturally, people sometimes get offended or touchy about certain topics. Unfortunately, what offends one person, doesn't offend the next, thus the decision to not practice censorship.

There are quite a few very intelligent people on this list. So far, we've managed to handle our differing opinions and posting styles with very little problem. For those people who aren't comfortable with this kind of list, there are plenty of lists out there with heavy moderation.

Anyway, if there's anything I can clear up for you, just ask.

pennyDoe Serena Cochran <dscochran1comcast (DOT) net> wrote:

Hi, This is Beauty, or b4jcll or whatever I’m signed in as.

Do ya’ll always have this much drama in this

group? It is positively uncalled for, and for each person

that causes it or participates in it, they should be

warned once outside the group, then if it keeps up

banned. I mean people, people are sick in this group,

and cannot believe what I am seeing everyday. There

about 5 of you that would gone if you were in mine.

MSN won’t tolerate stuff like that. The group leaders

For the most part do not have to worry about it. All of you should be ashamed of yourselves and also for

Mistreating someone who is ill, and also, not having

Respect for the Owner/Manager of the group and

Moderators. Anyway, that is my opinion and you guys

do what you want, but this is not obviously working

the way it seems the rules are now. I pray that things

change. Blessings †~~Beauty

there before the grace of God go I..........

This email is protected by the very latest 2007 Nortons Symantec Internet Security

[Guest guest]

:-) penny Windsor <rwindsor@...> wrote: Dear Penny Just some moral support. As a list owner and moderator of another list, I found myself sitting around a conference table with a flamer who I had allowed to self incinerate. For everyone else, it was a potentially tense moment but then the reality struck home, face to face our interchange was polite and constructive.

We have all learned to metaphorically put our fingers in out ears at times but are grateful for the outcome which is a knowledge base built on rock. Regards Windsor Re: [infections] Re: Someone asked about the MP? Hi Beauty, Penny here. I'm the list owner. I'd try to help, but I'm afraid I'm not exactly sure what it is that you're concerned about. We have a policy of no censorship (unless it's absolutely necessary). Naturally, people sometimes get offended or touchy about certain topics. Unfortunately, what offends one person, doesn't offend the next, thus the decision to not practice censorship. There are quite a few very intelligent people on this list. So far, we've managed to handle our differing opinions and posting styles with very little problem. For those people who aren't comfortable with this kind of list, there are plenty of lists out there with heavy moderation. Anyway, if there's anything I can clear up for you, just ask. pennyDoe Serena

Cochran <dscochran1comcast (DOT) net> wrote: Hi, This is Beauty, or b4jcll or whatever I’m signed in

as. Do ya’ll always have this much drama in this group? It is positively uncalled for, and for each

person that causes it or participates in it, they should be warned once outside the group, then if it keeps up

banned. I mean people, people are sick in this group, and cannot believe what I am seeing everyday. There

about 5 of you that would gone if you were in mine. MSN won’t tolerate stuff like that. The group

leaders For the most part do not have to worry about it. All of you should be ashamed of yourselves and also for Mistreating someone who is ill, and also, not having Respect for the Owner/Manager of the group and Moderators. Anyway, that is my opinion and you guys do what you want, but this is not obviously working the way it seems the rules are now. I pray that things change. Blessings †~~Beauty there before the grace of God go I.......... This email is protected by the very latest 2007 Nortons Symantec Internet Security