Re: ampligen

[Guest guest]

In a message dated 1/7/00 12:54:22 AM Eastern Standard Time,

onelist writes:

> Someone asked about a week ago (sorry, I don't remember who) why

> Kaiser, the first Ampligen patient, went off the drug after 5 years.

> was given no choice.

May I respectfully suggest that 'we' discontinue this thread unless there is

any

NEW info. We know who is pro and who is con. It seems like the same info is

being rehashed over and over and over and..... Anyone agree?

Mike

[Guest guest]

Oh gee, , now I'm blushing. Sorry I was curt.

You can leave the corner now, while I take your place ...

But what IS the frequency???

;-)

[Guest guest]

MCamp10139@... wrote:

> In a message dated 1/7/00 12:54:22 AM Eastern Standard Time,

> onelist writes:

>

> > Someone asked about a week ago (sorry, I don't remember who) why

> > Kaiser, the first Ampligen patient, went off the drug after 5 years.

>

> > was given no choice.

> May I respectfully suggest that 'we' discontinue this thread unless there is

> any

> NEW info. We know who is pro and who is con. It seems like the same info is

> being rehashed over and over and over and..... Anyone agree?

>

> Mike

Mike,

I AGREE, THANKS for saying it!!!!

Marcia

[Guest guest]

In a message dated 1/7/00 7:22:44 PM Eastern Standard Time,

mgrahn@... writes:

<< In a message dated 1/7/00 12:54:22 AM Eastern Standard Time,

> onelist writes:

>

> > Someone asked about a week ago (sorry, I don't remember who) why

> > Kaiser, the first Ampligen patient, went off the drug after 5 years.

>

> > was given no choice.

> May I respectfully suggest that 'we' discontinue this thread unless there

is

> any

> NEW info. We know who is pro and who is con. It seems like the same info

is

> being rehashed over and over and over and..... Anyone agree?

>

> Mike >>

Mike and all,

May I respectfully suggest, that since this site is an experimental list

site, that we all are presumably here to share and acquire an educated

decision process. I don't subscribe to the ostrich syndrome and do feel that

an opinion is just that, and decide for myself from all opinions rendered.

Wouldn't we all be missing opportunities if subjects are not " rehashed " ?

Ampligen has been a controversial issue for years and may continue to be for

many more, thus I feel it is an important issue to follow.

I, also see that the ones on this list are very educated per their posts,

thus one does not have to weed through a large list for gems.

I, along with GAILRONDA , have been in touch with Kaiser and it is true

why she was taken off of ampligen. She came here to Charlotte, NC to have

her chiari decompression with Dr. Rosner, the pioneering nsg in this

area. She is terribly ill now, thus it should be mandatory to have a follow

up on post ampligen trials. THERE ARE NO FOLLOW UPS. I know that while one

is on ampligen one has a feeling of having a parachute, so to speak, and is

considered a valuable patient by the administrator but for me also, there was

no follow up and no in-office consideration of side effects. I'm not a MD,

but was in the medical field for 30 years. I probably know just enough to be

dangerous. Thank God I have an excellent internist now that keeps an eye on

my LFTs that tripled for some of us in my trial. I'm not pro or con....I'm

an advocate for the CAB and the safe administration of ampligen with the

proper work ups.

As I am preparing for Chiari surgery, I do not wish to banter with the

politics of ampligen, as my health is extremely precious to me. If you have

time check out the chiari site...WACCMA for the symptoms, which are exactly

the same as CFIDS. In fact NMH is considered the gold standard per diagnosis

along with a cine MRI. Of course, the cine MRI is an objective finding, I am

relieved to say.

New to the list and just my 3 cents worth.

Cheryl Colley

[Guest guest]

In a message dated 1/8/00 1:14:54 PM Eastern Standard Time,

mgrahn@... writes:

<< We want to hear about peoples personal experiences with it, not all

kinds of second hand horror stories or hate campaigns against drug companies

>>

Marcia, either you weren't reading Chery's post correctly or were too wrapped

up trying to put her in a category to which she didn't belong. Cheryl

clearly posted that she HAD been an Ampligen patient. She wasn't giving you

a " horror story " and she wasn't campaining against anyone. She's a patient

who merely posted on her own personal experiences with the drug. She, like

every patient who tries a new medication, wanted to get well. Because her

experience, now that she is no longer on the drug, can be told, is something

advantageous to many on this list. The same would hold true for Chiri

Malformation. Some have gotten some good from this, many have not. But that

doesn't mean that someone who has recently had the operation isn't welcome to

post on their experiences. Indeed, the opposite is true. These are two

ongoing experimental methods and there are members on the list who want to

hear from all patients with first-hand experiences. Even the " retelling " is

welcomes by many.

As others have expressed, if you are one who does not welcome this, merely

delete the post.

Gail

[Guest guest]

In a message dated 1/8/00 1:14:48 PM Eastern Standard Time,

mgrahn@... writes:

<< We who have been on this list any length of time have heard these same

arguments repeatedly ad nauseum about Ampligen and ALSO do not wish to banter

with the politics of it, thats what Mike and I

were trying to say. We want to hear about peoples personal experiences with

it, not all kinds of second hand horror stories or hate campaigns against

drug companies etc. Its pretty much been

determined on this list who hates the drug and wants to destroy the company

that makes it and make it unavailiable to all who those who are receiving

their life back from it. Personal attacks on

people because they like/hate or even want to hear about Ampligen as a

possible treatment should not be acceptable and not wanting to hear any side

continually attacking the other is NOT being an

ostrich........I personally take offense at your comments.

>>

Marcia,

As I have certainly not been one of the ones on the list for a long time and

do not know the past archives or politics, I humbly bow out, because as your

letter assumes, all has been discussed and a decision has been made. I do

not wish to make you further nauseous despite my first hand experience. I

did not personally attack anyone. I have always been for the SAFE, TRUTHFUL

approval of ampligen. Little do you know how diligently I've fought for that.

I find this very sad and hurtful after my nine months of ampligen hell. You

say you want to hear the truth not horror stories. After being interviewed

by the CDC and talking to 43 past ampligen patients (who I won't speak for) I

know the truth for those of us who were not pre tested properly or followed

properly.

I'm cognitive of the fact that you sit in a position of power to hurt

newcomers to this site. I will go away. You don't have to hurl any more

hurts at me. I asked that there be no political bantering, as I need NO

STRESS in my life prior to this surgery.

I'm also grateful to you for telling me that the chiari discussions are in

the archives and are old news that I may want to read. Thank you very much

but three expert opinions have objectively told me that my diagnosis is

chiari. No, it is not the surgery for all, but I was hoping that if even one

person did not have to go through the physical and emotional pain, the

destitution of all savings and retirement gone, the family horror of sitting

down with your two beloved children and telling them that there is no more

college money, having to witness lies and injustices to one's health as well

as others, and prolonging neurological symptoms that will take longer to

heal, my prayer will be answered.

I'm truly amazed and injured by your anger and hurtful words. I must

conclude that this group is a very tight-knitted group that has a decided

concessus and does not want to search further per experimental situations.

Speaking of experimental, I put my life on the line, my entire savings, my

family structure, etc., to be an experimental patient with ampligen. Have

you considered appreciating that? I was one of the numbers they needed for

the trials.

Regretfully, I thought I'd found a professional and educational site. Are

you proud that you have turned another seeking help away?

Cheryl Colley

" Still counting the Butcher's Bill "

[Guest guest]

In a message dated 1/8/00 3:39:39 PM Eastern Standard Time,

mgrahn@... writes:

<< I was referring to YOUR " secondhand " Ampligen stories we have heard

repeated here time and again and none of those people have ever come to the

list to

talk about their experiences so we can ask them about them. >>

Your post was read by several others including Cheryl as an attack upon her.

This is the very reason that patients that have adverse reactions don't want

to post about them. You assume that " secondhand " means a dangerous lie or

old news. Neither is true. It merely means that others do not care to post

on their own (look what happened when one agreed to come on and post about

her own experiences). I can offer very little " first-hand " knowledge of most

areas of CFIDS. But I can post on 176 years worth of experience in the field

of advocacy and meeting hundreds of others who have this. Again, if you

don't want to hear any of my comments, merely delete them. You won't be

hurting my feelings and will not stress out others in the process. The last

I looked, this was a democracy and Cheryl is trying to let all have their

say.

Let's keep it that way.

Gail

[Guest guest]

In a message dated 1/8/00 4:12:09 PM Eastern Standard Time, GAILRONDA@...

writes:

<< 176 >>

make that 17......I'm not dead yet!!!!

Gail

[Guest guest]

Sonogafer@... wrote:

> From: Sonogafer@...

> May I respectfully suggest, that since this site is an experimental list

> site, that we all are presumably here to share and acquire an educated

> decision process. I don't subscribe to the ostrich syndrome and do feel that

> an opinion is just that, and decide for myself from all opinions rendered.

> Wouldn't we all be missing opportunities if subjects are not " rehashed " ?

> Ampligen has been a controversial issue for years and may continue to be for

> many more, thus I feel it is an important issue to follow.

> As I am preparing for Chiari surgery, I do not wish to banter with the

> politics of ampligen, as my health is extremely precious to me.

> New to the list and just my 3 cents worth.

>

> Cheryl Colley

Cheryl,

We who have been on this list any length of time have heard these same arguments

repeatedly ad nauseum about Ampligen and ALSO do not wish to banter with the

politics of it, thats what Mike and I

were trying to say. We want to hear about peoples personal experiences with it,

not all kinds of second hand horror stories or hate campaigns against drug

companies etc. Its pretty much been

determined on this list who hates the drug and wants to destroy the company that

makes it and make it unavailiable to all who those who are receiving their life

back from it. Personal attacks on

people because they like/hate or even want to hear about Ampligen as a possible

treatment should not be acceptable and not wanting to hear any side continually

attacking the other is NOT being an

ostrich........I personally take offense at your comments.

What we were saying by " enough of this thread " is that we WANT to hear about

peoples personal experiences with their treatments here including ampligen, but

not CONTINUAL bashing of any company or

treatment such I have witnessed here from this lists inception. Anyone is free

to take his own personal choice of treatment and if others don't like it they

should NOT take it.......very simple.

We have also discussed the chiari malformation issues here in depth awhile back,

you might want to refer to the archives and see if there was anything helpful to

you or . Hope this surgery

will treat whatever is causing your CFS problems for both of you........

Marcia

[Guest guest]

Cheryl,

Yours is the kind of info. that we want re Ampligen. I had made a statement

that

I felt the same exact info was being REPEATED, not rehashed (I said rehashed

but

I meant repeated). Pls. do not leave the list. We need all of the first

hand info

that we can get. Ampligen is a very serious subject in our community and we

need as much info as possible.

Mike

<Cheryl wrote,

<I'm truly amazed and injured by your anger and hurtful words. I must

conclude that this group is a very tight-knitted group that has a decided

concessus and does not want to search further per experimental situations.

Speaking of experimental, I put my life on the line, my entire savings, my

family structure, etc., to be an experimental patient with ampligen. <

[Guest guest]

>From: Sonogafer@...

>

>. Thank God I have an excellent internist now that keeps an eye on

>my LFTs that tripled for some of us in my trial. I'm not pro or con....I'm

>an advocate for the CAB and the safe administration of ampligen with the

>proper work ups.

>

>

What are LFTs?

[Guest guest]

GAILRONDA@... wrote:

> From: GAILRONDA@...

>

> In a message dated 1/8/00 1:14:54 PM Eastern Standard Time,

> mgrahn@... writes:

>

> << We want to hear about peoples personal experiences with it, not all

> kinds of second hand horror stories or hate campaigns against drug companies

> >>

> Marcia, either you weren't reading Chery's post correctly or were too wrapped

> up trying to put her in a category to which she didn't belong. Cheryl

> clearly posted that she HAD been an Ampligen patient. She wasn't giving you

> a " horror story " and she wasn't campaining against anyone. She's a patient

> who merely posted on her own personal experiences with the drug. She, like

> every patient who tries a new medication, wanted to get well. Because her

> experience, now that she is no longer on the drug, can be told, is something

> advantageous to many on this list. The same would hold true for Chiri

> Malformation. Some have gotten some good from this, many have not. But that

> doesn't mean that someone who has recently had the operation isn't welcome to

> post on their experiences. Indeed, the opposite is true. These are two

> ongoing experimental methods and there are members on the list who want to

> hear from all patients with first-hand experiences. Even the " retelling " is

> welcomes by many.

>

> As others have expressed, if you are one who does not welcome this, merely

> delete the post.

> Gail

This was the point I was trying to make. I was referring to YOUR " secondhand "

Ampligen stories we have heard repeated here time and again and none of those

people have ever come to the list to

talk about their experiences so we can ask them about them. We just keep

cycling round and round on this and it never gets us anywhere.........I am happy

to hear of Cheryls experiences with

Ampligen, Chiari or anything else she has tried......

I feel like everyone who tries to come here to tell a positive story about

Ampligen is attacked and chased away so we are not allowed to hear the whole

story.........(example your recent political

attack on after she consented to come back to the list to share her

personal experience with us because you and Ken alluded that all their stories

were made " under duress " by Hemispherx.) I

just don't think this is the forum for attacking people, treatments or drug

companies and hate to see the list being used for that purpose.......I was under

the impression this list was a place for

people to come to share their personal experiences good or bad about their

treatments (without fear of attack or being chased away) as has always happened

here with Ampligen patients, NOT for

attacking drug companies, particular treatment choices, or patients who choose

treatments others don't like. My issue is that everyone should have the right

to make their own treatment choices no

matter what works best for them.................and I am grateful to learn from

everyone who shares their experiences............but the hate/vendettas against

Ampligen and its patients or any

other treatment options just grieves me and is terribly damaging to us CFS

patients just here looking for hope and answers......

Marcia

[Guest guest]

Sonogafer@... wrote:

> I'm truly amazed and injured by your anger and hurtful words. I must

> conclude that this group is a very tight-knitted group that has a decided

> concessus and does not want to search further per experimental situations.

> Speaking of experimental, I put my life on the line, my entire savings, my

> family structure, etc., to be an experimental patient with ampligen. Have

> you considered appreciating that? I was one of the numbers they needed for

> the trials.

>

> Regretfully, I thought I'd found a professional and educational site. Are

> you proud that you have turned another seeking help away?

Cheryl,

I truly apoligize for this misunderstand, I have been trying all this time to

stick up for peoples right to speak about their OWN experiences with Ampligen or

any other treatment......this is what

we WANT to hear......when we hear secondhand stories it all becomes distorted

and biased....

We DO want to hear of all your treatment experiences......

Marcia

[Guest guest]

Cheryl, Marcia and all,

Cheryl, I am sorry you do not feel welcome. When I posted yesterday that I

felt people should be allowed to post what ever they want about Ampligen it

was to keep you from feeling this way. If people do not want to read your

post or others on Ampligen they can delete them. I am very interested in what

you have to say. I do delete posts sometimes but I know that I can always go

back and read them in the archives if I need to refresh my memory.

I feel the only chance for healing the Ampligen wars is for everyone to be

able to freely state their view as many times as they want. People on both

sides of this issue are very sensitive to the idea that their views are being

prohibited. So I vote for letting this list be a forum for the views be

expressed as long as no personal attacks.

Marcia, I can understand that the posts may seem repetitive to you. But I

think it is important for these people to express their views here as much as

they want. The chance for Cheryl, , , and others that have been on

Ampligen to talk is healing for them. Whether they are pro or con on Ampligen

it is obvious to me that the Ampligen trials have been a life-altering

experience for most of them. Some times the volume, tone, and length of the

posts on a topic can tell you as much about the writer and their views as the

actual words they use.

Part of my decision last year not to try to get in an Ampligen trial was

based on the horrible stress that is involved in getting approved for

Ampligen trials, the difficulty at trial sites, and overall difficulty

dealing with the company. It was the years of reading the posts of people

both pro and con Ampligen that gave me the opinion that the actual trial set

up is a huge problem. I think I would be a good candidate for the actual drug

but could not deal with the company.

Sydney

[Guest guest]

In a message dated 1/9/00 1:56:57 AM Eastern Standard Time,

onelist writes:

> This issue is out of hand - again. Treatment with ampligen is absolutely

> allowed. Anyone speaking of the politics of this issue, or attacks those

who

> speak about their experiences with ampligen

> will be banned.

>

> Christie

OK Christie, I would agree. But how about one or two warnings first. I

don't think

we want to ban anyone when there can be a fine line between

experience/treatment

and politics.

Mike

[Guest guest]

In a message dated 1/10/00 10:10:42 AM Eastern Standard Time,

afmoore1@... writes:

<< Gail, you state above " look what happened when one agreed to come on and

post about her own experiences. " Does this mean, Gail, that you or

someone you know ASKED Cheryl to sign onto the list and tell about her

negative experiences with Ampligen? >>

I resent the heck out of this remark. Get your facts straight. This is what

has been the problem with ampligen and Hem, & Willie for

years.....Untruths. And, I barely skimmed on the negative experiences

attempting to be non confrontational. I am my own person and I will NOT have

CSC-023 in the 511 trial included in a lie. Why don't more patients post

regarding ampligen and come out and speak? FEAR....Fear of attacks on a

delicate, worsened immune system. You all know what stress does to us. Fear

of being abandoned by the doctor that gives you your pain meds, or got you

hooked on them to be able to complete the trial. And, in closing, for a

person who stated that, we who were not doing well, must have psychiatric

problems. Let me state that no one wanted to get well more than me. I loved

my job and had returned to school to become to become board registered in my

field. I made wonderful money and kept my kids in college. I'm not a

hypochondriac and do my best to avoid them. That is why I had posted here on

the Experimental list, as I thought this group would be doers and not whiners

or attackers. Also, the others in my group were all professionals, had

researched the drug, as much as possible, and had a very optimistic outlook

on ampligen at the beginning.

Were we all positive for the RNasel enzyme? NO, and the results were not in

until we were well into our second month of treatment.

If the CAB had come to fruition there was a pro and a con speaker willing to

stand up in front of the group and speak the truth for every trial. That

would be the physical site for sorting out the truth. It just seems that the

powers that be don't want to hear the truth because of the possibility of a

dollar being removed from their pockets. Who do you think are the major

stock holders in Hem? The administrating doctors were even given stock. Is

this a breech of ethics? You darn right it is.....The first line of the

Hippocratic oath is.... " By all means do no harm. " Well, I've been harmed and

I won't slink away and think that I can't make a difference to the next

ampligen patient. I state again adamantly, that I am not against the safe

administration of ampligen with the correct work ups and follow ups. Most of

the ampligen patients that are sicker are either dead-a 28% suicide rate,

which is the leading cause of death, followed by heart disease and cancer.

Now, after the huge cloud of mystery around ampligen, how many doctors do you

think will touch us?

Do not dare ever assume that Gail or anyone asked me to post on this list!

If the truth scares you, then so be it. Normally I could take this in stride

but I am very stressed regarding the attacks and wish I'd never signed on

this list. I will heal with the chiari surgery and I will continue with

renewed strength to tell the truth.

To those of you on the list that were kind in your posts and wanted to know

more, I apologize for the above, as it indeed is not intended for you.

Please backchannel me, if you want to know more. I'd be delighted to discuss

all further with you.

Cheryl

" And, what is the butcher's bill today? "

[Guest guest]

In a message dated 1/10/00 10:10:52 AM Eastern Standard Time,

afmoore1@... writes:

<< Gail, you state above " look what happened when one agreed to come on and

post about her own experiences. " Does this mean, Gail, that you or

someone you know ASKED Cheryl to sign onto the list and tell about her

negative experiences with Ampligen?

>>

I was not in touch with Cheryl when she decided to join this list and had not

spoken to her for quite awhile. Another patient who had been on Ampligen

told me she had encouraged her to join and let others know of her nine months

on the drug. Others have been encouraged as well (not by me and I am not in

touch with them) but don't feel well enough to even turn on thier computers.

Gail

[Guest guest]

GAILRONDA@... wrote:

>

> From: GAILRONDA@...

>

> In a message dated 1/8/00 3:39:39 PM Eastern Standard Time,

> mgrahn@... writes:

>

> << I was referring to YOUR " secondhand " Ampligen stories we have heard

> repeated here time and again and none of those people have ever come to the

> list to

> talk about their experiences so we can ask them about them. >>

> Your post was read by several others including Cheryl as an attack upon her.

> This is the very reason that patients that have adverse reactions don't want

> to post about them. You assume that " secondhand " means a dangerous lie or

> old news. Neither is true. It merely means that others do not care to post

> on their own (look what happened when one agreed to come on and post about

> her own experiences).

Gail, you state above " look what happened when one agreed to come on and

post about her own experiences. " Does this mean, Gail, that you or

someone you know ASKED Cheryl to sign onto the list and tell about her

negative experiences with Ampligen?

[Guest guest]

In a message dated 1/10/00 11:14:19 AM Eastern Standard Time,

moores@... writes:

<< The high suicide rate

could reflect their desperation rather than the effects of amplegin. >>

This could very well be true of some, but many told others the whys before

their act. They were in such intense pain...undescribable pain...and could

no longer tolerate life. They were quite forthcoming before their deaths for

anyone who would listen. You don't need to wonder when so many have made

thier reasons known before the fact.

Gail

[Guest guest]

In any study involving volunteers there is always the self selection factor. It

could be that amplegin study volunteers were those most desperate to rid

themselves of cfs. The high suicide rate

could reflect their desperation rather than the effects of amplegin. I think the

thing to do is wait for the results of the double blinded study to come out. If

someone want to try it before then

so be it. Let's just be thankful that this is one treatment that is being

exposed to a double blinded study. I wish Cheney, Goldstien, and some of the

other cfs gurus would do double blinded

studies.

Steve

[Guest guest]

point well taken

steve

GAILRONDA@... wrote:

> From: GAILRONDA@...

>

> In a message dated 1/10/00 11:14:19 AM Eastern Standard Time,

> moores@... writes:

>

> << The high suicide rate

> could reflect their desperation rather than the effects of amplegin. >>

> This could very well be true of some, but many told others the whys before

> their act. They were in such intense pain...undescribable pain...and could

> no longer tolerate life. They were quite forthcoming before their deaths for

> anyone who would listen. You don't need to wonder when so many have made

> thier reasons known before the fact.

> Gail

>

> ---------------------------

[Guest guest]

Sonogafer@... wrote:

>

> From: Sonogafer@...

>

> In a message dated 1/10/00 10:10:42 AM Eastern Standard Time,

> afmoore1@... writes:

>

> << Gail, you state above " look what happened when one agreed to come on and

> post about her own experiences. " Does this mean, Gail, that you or

> someone you know ASKED Cheryl to sign onto the list and tell about her

> negative experiences with Ampligen? >>

>

> I resent the heck out of this remark.

Why? I asked an honest question. And, frankly, it wasn't even that

important a question. Why do you resent it so much?

========

> Get your facts straight.

The facts ARE straight. The words I quoted were the EXACT words that

Gail wrote in her post. Verbatim. THAT is a fact.

Bottom line: A QUESTION is not a FACT; it is a QUESTION. A question

is a sentence in interrogative form intended to elicit a reply from the

person asked. A fact is reality, actuality. The two words-- " QUESTION "

and " FACT " --are NOT and never HAVE been synonymous.

========

> This is what

> has been the problem with ampligen and Hem, & Willie for

> years.....Untruths. And, I barely skimmed on the negative experiences

> attempting to be non confrontational. I am my own person and I will NOT have

> CSC-023 in the 511 trial included in a lie. Why don't more patients post

> regarding ampligen and come out and speak? FEAR....Fear of attacks on a

> delicate, worsened immune system. You all know what stress does to us. Fear

> of being abandoned by the doctor that gives you your pain meds, or got you

> hooked on them to be able to complete the trial. And, in closing, for a

> person who stated that, we who were not doing well, must have psychiatric

> problems. Let me state that no one wanted to get well more than me. I loved

> my job and had returned to school to become to become board registered in my

> field. I made wonderful money and kept my kids in college. I'm not a

> hypochondriac and do my best to avoid them.

Why are you going into all of this? You have expressed your opinion of

Ampligen and told of your experiences with it, and I accept what you say

regarding your experiences with the drug as valid and true. You have

made your point. I don't understand why we are going into all of this.

Seems to me like the bees are a'buzzin for naught.

========

That is why I had posted here on

> the Experimental list, as I thought this group would be doers and not whiners

> or attackers. Also, the others in my group were all professionals, had

> researched the drug, as much as possible, and had a very optimistic outlook

> on ampligen at the beginning.

> Were we all positive for the RNasel enzyme? NO, and the results were not in

> until we were well into our second month of treatment.

> If the CAB had come to fruition there was a pro and a con speaker willing to

> stand up in front of the group and speak the truth for every trial. That

> would be the physical site for sorting out the truth. It just seems that the

> powers that be don't want to hear the truth because of the possibility of a

> dollar being removed from their pockets. Who do you think are the major

> stock holders in Hem? The administrating doctors were even given stock. Is

> this a breech of ethics? You darn right it is.....The first line of the

> Hippocratic oath is.... " By all means do no harm. "

You're close, but you might want to check the wording on that since you

want to " get the facts straight. "

========

> Well, I've been harmed and

> I won't slink away and think that I can't make a difference to the next

> ampligen patient. I state again adamantly, that I am not against the safe

> administration of ampligen with the correct work ups and follow ups. Most of

> the ampligen patients that are sicker are either dead-a 28% suicide rate,

> which is the leading cause of death, followed by heart disease and cancer.

> Now, after the huge cloud of mystery around ampligen, how many doctors do you

> think will touch us?

>

> Do not dare ever assume that Gail or anyone asked me to post on this list!

Actually, Gail does mention in her post of 10 January 2000, at

10:10:52, that " another patient who had been on Ampligen told me [Gail]

she had encouraged her [you, Cheryl] to join... " There. That's it. My

question is answered, right there. No problem, no hassles, no long

diatribe. A simple question. A simple answer. Was it really that

difficult?

========

> If the truth scares you, then so be it. Normally I could take this in stride

> but I am very stressed regarding the attacks and wish I'd never signed on

> this list. I will heal with the chiari surgery and I will continue with

> renewed strength to tell the truth.

> To those of you on the list that were kind in your posts and wanted to know

> more, I apologize for the above, as it indeed is not intended for you.

> Please backchannel me, if you want to know more. I'd be delighted to discuss

> all further with you.

>

> Cheryl

>

> " And, what is the butcher's bill today? "

This is an interesting signature line, Cheryl. Some people think that

signature lines can often be very revealing. And, rightly or wrongly,

this line comes across to me as very cycnical comment. Actually, to be

honest, whether you mean for your post to come across this way to others

or not, the fact is this: you sound to me like a very bitter person.

Part of it I can understand. No improvement in your health after taking

Ampligen, as you had expected to have when you started on it. Even

worse, in your case, you had a decline in your health. And then, there

is the money .... money down the drain. Washed away. Forever. For

nothing. I can understand these feelings. I really can.

And I can understand someone wanting to speak of his/her experiences

with a drug. I do not deny your reality. The drug didn't work for

you. That is a fact. Period. I KNOW it won't work for everyone, and I

am very sorry you had a negative experience.

I just have one real big problem: the freedom of choice.

Dr. Wayne Dyer, perhaps, said it best when he stated, " You have the

right to flail your arms around all you want...as long as you don't

interfere with MY right to have my nose shaped the way I want my nose to

be shaped. " That sums it up, for me.

[Guest guest]

PLEASE - PLEASE - PLEASE

STOP YOUR WHINNING, BITCHING, MOANING AND FIGTING.

JEEZ - ALL OF YOU AMPLIGEN FOLKS , YOU MAKE ME SICK

GO GET SOME PAMPRIN, A GOODD PIECE OF ASS OR NEW

EXTRA STRENGTH BATTERIES FOR FOR VIBRATORS,

BE FOR THE LOVE OF YOUR FELLOW MAN,

STOP IT !!!

[Guest guest]

And now, ladies and gentlemen, a word from one of our dignified and

refined fellow list members:

> JEEZ - ALL OF YOU AMPLIGEN FOLKS , YOU MAKE ME SICK

>

> GO GET SOME PAMPRIN, A GOODD PIECE OF ASS OR NEW

> EXTRA STRENGTH BATTERIES FOR FOR VIBRATORS,

[Guest guest]

When Gail posted a statement from Ray Colliton, one of the people who left

the CAB Formation Project, I was sorely tempted to respond, but shortly after

that Christie posted that she was about to resign. Out of respect and

concern for her, I held off on responding to that post, honoring the promise

I'd made to stay out of further political discussion about Ampligen.

However, no one else has honored Christie's request, and the debate is

traveling down a road that will only bring ALL of us more pain.

To date I have not made an indepth statement about my perspective on the

events and the politics that are tearing our community apart. It is time to

do so now.

I have known about Ampligen since the early 1990s. I knew about the broken

promises from the company to patients enrolled in the 502 double-blind study

(I hope I've got my numbers right!), and I knew about the moral fiber of the

company's CEO.

In 1993, I participated in an emergency meeting with the FDA, as one of a

small group of advocates who lobbied members of Congress, including my

cousin, Senator (and Senate Republican Whip) Alan Simpson, my good friend

Congressman (and House Democratic Caucus Chair) Vic Fazio, and 5 other

Senators and Congressmen from 4 Western states (Nevada, Wyoming, New Mexico,

and California), for help after HEM, the drug company's name at the time,

abruptly withdrew its entire supply of Ampligen from all CFS patients. I was

not an Ampligen patient then, nor did I at that time entertain any notions of

becoming one. The advocates with whom I collaborated included Jerry Crum and

Kaiser, both Ampligen patients fighting for the return of their drug.

I rallied to the cry for help from my fellow CFS patients. The outcome of

our efforts was the first-of-its-kind co-signed letter to be sent from both

chambers of Congress (House and Senate) to the FDA urging streamlining of the

drug approval process for promising CFS drugs, including Ampligen.

That was 1993. In 1994, I believe (if my memory serves me right), following

a series of meetings between advocates, researchers, clinicians, and FDA

personnel, Ampligen was granted orphan drug status, which provided some

financial advantages that would make it easier for the company to get its

drug back on its feet and into the clinical trial/approval process (sorry,

but this is the extent of my expertise on orphan drug status! I wasn't

motivated then to closely follow everything that happened).

At the time, I figured that the drug would never be available again to CFS

patients. I was proved wrong in 1997, when, as a result of continued

advocacy efforts (I wasn't involved at the time) authorized the 511 protocol,

with up to 100 slots for severely ill CFS patients, and the development of a

protocol for the 516 double-blind Phase III confirmatory trial. HEM had

undergone financial restructuring, changed its name to Hemispherx Biopharma,

Inc, and was in the game again to get its drug through the approval process

and available for therapeutic use in treating severe CFS.

During the interim, Dr Suhadolnik identified the aberrant low molecular

weight RNase L enzyme (the 37 kDa low molecular weight, very active, RNase L

enzyme) in the blood of a subset of CFS patients.

I remembered reading about Ampligen in Kendra Daygar's compendium of

Mainstream CFS research, published somewhere around 1994 (I can't be positive

about the date). There was a page on Ampligen, which included data showing

that the 13 patients out of the 15 in Dr 's open label Ampligen study

(that preceded the double-blind study) who responded well to the drug all had

upregulated 2 5A Synthetase/RNase L antiviral pathways.

At this point in time, however, Dr Suhadolnik's research team had not yet

developed the techniques to separate and measure the RNase L enzyme proteins.

In 1995, they were able to identify the the novel enzyme. I was one of the

first to see the first blue gel that showed the RNase L enzyme lane to be

much shorter in some CFS patients than in healthy normal controls. Seeing

the lane that was half the size of the other lanes is a memory I'll never

forget. I still did not entertain any thoughts of ever taking Ampligen, but

I was fascinated by the notion that here was a drug that might have a

positive effect on this aberrant RNase L in at least a subset of CFS

patients. Here was the potential of a therapeutic treatment that might have

the ability to target a specific defect in the immune system, and improve it,

maybe even correct it. Wow! The possibilities were truly mind-boggling.

When I heard in 1997 that FDA was dancing with the makers of Ampligen again,

I discussed my options with my physician. If I were to enroll in the

Ampligen 511 open label, cost recovery study, it would mean I'd have to leave

my home and family in California and relocate to Nevada to participate in the

study. It would mean a lot of hardship and inconvenience for my husband and

children, as well as for me. It would mean having to come up with

approximately $15,000 to pay for a year's treatment (including the drug, the

infusions and associated medical supervision costs). One factor weighed

heavily in the decision making factor. Did I have the RNase L enzyme

abnormality? 2 5A synthetase/RNase L upregulation appeared to be a factor in

the positive outcomes from the earlier Ampligen open label study. This would

be the deciding factor in the cost/benefit research my husband and I

conducted. If I were negative for this novel enzyme, I would have declined

to be a participant in the study. The financial and emotional costs for my

family were too high for me to go into the study without this " chip " on my

side. I knew it would be a gamble as to whether I'd do well on the drug or

not, and I had to have as favorable odds as possible before I committed to

the study.

I WAS positive for the 37 kDa enzyme, so positive that I had none of the

normally occurring 80 kDa enzyme, and only minimal levels of the 42 kDa

enzyme. After I found out I was positive, I made the decision to take

Ampligen and see what would happen. I started Ampligen therapy December 15,

1997.

PLEASE KEEP IN MIND THAT I AM SPEAKING ONLY OF MY OWN EXPERIENCE HERE AND

THROUGHOUT THIS POST.

My first few months on the drug were not easy. I had to reduce the dose from

400 mg to 300 mg, and slow the infusion rate enough to relieve the head, body

and bone pain I was experiencing. For me, these adjustments worked. I

started to enjoy a better quality of life. The first area of noticeable

improvement for me was cognitive function. After that came reduction in

physical and neurological impairments, labs began to normalize (renal and

hepatic enzymes were always normal), and my recovery time when I'd do too

much became much shorter. I was getting some of my life back. Around

February or March, I met Clement via her CFSMail list. She asked if

I'd write about my experience. My story hit the net around April of 1998.

During a conversation I had with one of the organizers of the AACFS Cambridge

conference planned for fall, 1998, I proposed an interactive panel

presentation by Ampligen 511 patients before the clinicians and researchers

-- a " pick my brain " session where open discussion could take place between

the physicians and the patients. Eventually the conference organizers

decided to make the presentation a patient event, rather than a closed

session with MDs. Their reasoning was that the patients might be upset if

they were shut out of this workshop.

Where did I go to find panel participants? At this time, information about

511 participants and sites was extremely hard to come by. None of the

patients were communicating between sites. We didn't even know where the

other sites were. I never called Hemispherx for the list of patients. I

spoke with several people (I'm not sharing names without their permission)

who knew more than I did about the study, and got some investigator and

patient names. I contacted patients of Drs Lapp and Cheney, and ended up

with a panel of 4 participants (2 male, 2 female) who were patients of 3

different investigators -- Lapp, Cheney and .

During the summer of 1998, I learned from Clement that there were

patients who were not doing well on Ampligen. I asked for their names so

that I could speak with them, but told me they were too sick and

frightened to speak out publicly or even to speak with me. As , Gail

and others began sharing the stories of those who were having problems, I

tried to communicate directly with some of them. I was told that the

patients didn't trust me, and refused to speak with me. There was nothing I

could do to help them. I told that the consent forms we signed clearly

spelled out the process for recourse if patients ran into difficulty and felt

they couldn't get what they needed from their investigator. I wrote a letter

spelling out these procedures. CFSMail would not post it, but Sasyfras did,

so I hope the information got out to some Ampligen patients.

In October 1998, 3 of the 4 original panel members presented their stories at

the AACFS conference. The 4th had a family conflict and could not attend the

meeting, but sent his presentation. Hemispherx didn't learn about the panel

until the week the meeting was held. I did not want it to become a three

ring circus. I had envisioned a direct, no-hype dialogue between patients

and physicians. However, Manual Asencio, the stock shorter who had recently

targeted Hemispherx for short-selling disaster, attended the meeting. Dr

approached me and asked for my permission to tape the meeting. I

granted it, because if things got out of hand with Asencio, we'd have the

evidence on video.

In her newsletter, Gail Kansky has reported that I was directed by Hemispherx

to put on the workshop, and that Hemispherx also directed me to select only

those patients who had had positive experiences. She has accused the

patients at Incline Village of being shills and promoters for HEB. She

called us " Stepford wives " (inferring very blatantly that we were brainwashed

by Hemispherx and blindly following their orders). She has accused us of not

caring about anyone whose experience with Ampligen was less than positive.

Gail presented this cascade of lies and gossip as truths. Her accusations

against me are false, as are many of the " facts " she has presented (511 and

516 patients at the Incline Village site never have gotten Ampligen 3 times a

week).

I was not involved in the early planning for the meeting of CFS activists

with Dr in Philadelphia in May 1999. To my knowledge, those planners

included Clement, Sherryl Jefferies, Gayle Babykin, Gail Kansky,

Burns, Ray Colliton, and Elaine Katz. Approximately 2 weeks before the

meeting was to be held, I received an email from inviting me to

participate. I accepted, and attended along with 2 other Ampligen patients

from my site.

At the meeting, it was decided by the group that we would proceed with plans

to put on a CAB (community advisory board, based on similar boards for

experimental drugs in the HIV and other patient communities) exploratory

meeting. An election was held, and the leadership was unanimously elected

by those in attendance. The activists who'd been involved from the beginning

insisted that this CAB would be an omnibus political CFS board, created to be

a voice for ALL CFS patients. From the start, I felt that an Ampligen board

should focus on the needs (both negative and positive) of Ampligen patients.

Conflict arose among the activists on this topic very early in the process.

Some of us wanted the CAB to represent Ampligen patients, some wanted little

input from Ampligen patients, but viewed the CAB as a base for a broader

political agenda.

The conflict between the two groups erupted within weeks of the May meeting.

Those who eventually left the CAB project wanted to organize the exploratory

meeting in such detail that a set of bylaws, election campaigns, and

already-active committee reports would be in place and presented at the

meeting. Those who stayed after the split had interpreted the outcome of the

May meeting as planning an exploratory meeting at which the attendees would

vote on the formation (or not) of a community advisory board. The leadership

elected in Philadelphia would cease at the exploratory meeting, and a new

election would take place. I was personally opposed to too much

pre-organization, because I felt it would diminish the democratic process

that attendees should be able to be a part of. Too much pre-planning, I

feared, could " taint " the democracy of the CAB formation process.

Nothing productive got done. The project was bogged down with backchanneled

rumors and accusations and gossip, all of which boiled to the surface Monday,

June 14, when I received a phone call from Ray Colliton. Ray told me he'd

been selected to represent the others previously named. He had been chosen

to tell me they had come up with a new leadership structure, and they wanted

me to accept it within 24 hours.

At that point the doorbell rang, and I told Ray I'd have to call him back.

One of my fellow Ampligen patients had come by to pick me up to go to our

infusion. When I returned home, I had a 3 page fax from Ray. This fax did

not go to any other members of the committee. It contained some points I

agreed with, such as focusing on patient safety before fast-tracking of the

drug. The crucial points spelled out their framework for new leadership. It

was one-sided, leaving out people who were not clearly in their camp (Rich

Wendel, Trudy Rink and Patti Schmidt were not included in the group's list of

" acceptable " (a direct quote) people for leadership roles. I was told

unequivocally that if I did not accept all of their points by 3 pm the next

day, they would leave the project and pursue safety issues in " whatever way

they wished. " The tone of the fax was threatening.

I was silent because they offered me only one option: agree with all of

their points by 3 pm the next day, or they'd resign and do things their way.

Since their demands were not democratic, I refused to accept them. I was

left with the second option. It did not require a response, because they'd

already stated what they'd do if I didn't accept their points. They resigned

in writing. Then they said they hadn't resigned, they were merely protesting

my autocratic behavior. They continued to harrass those who did not leave

the project, those who were continuing to try to put the meeting together.

So much energy was spent trying to deal with the splinter group's threats and

divisive tactics that there wasn't enough left to proceed with the

committee's task. Gail, Ray, and the rest of the splinter group

destroyed the project they had helped create by diverting everyone's

attention from the task at hand - planning the CAB exploratory meeting - to

petty political power plays.

I've been around the block enough times to be able to take a lot of heat when

things get contentious and still stay focused on the goal, but the attacks

from the splinter group became very personal and very vicious. When I asked

for specifics to substantiate their claims, they didn't provide them. It was

Ray who told me their dissatisfaction with my leadership was based on their

PERCEPTIONS (this is Ray's word, not mine) that I did not care about patient

safety, or about patients who had had problems with Ampligen. Rather than

engage in the catfight with them, I chose the high road. That meant not

responding to their outrageous accusations -- the silence they have accused

me of maintaining. It wasn't an easy thing to do, but they were not

interested in the facts by then. I had the strong sense that by then, they

were out to destroy my reputation. What recourse did I have? Sue them?

There are no laws governing internet behavior, and I don't have the millions

of dollars it would take to file the precedent-setting case. Fight back via

lists? What good would that accomplish? In the end, we all lost.

Adversity can bring out the best in people. It can also bring out the worst.

We have a very active and very vocal group of activists in the CFS community

who choose to use their energies attacking and taking down fellow activists,

instead of combining forces to defeat our common enemies -- ignorance and

cynicism from without. This is the cannibalism I've alluded to in previous

posts. As long as we allow the situation to exist where our own people can

viciously attack and destroy one another with impunity, we will never have

enough focus or energy to be truly effective. And why should we expect the

CDC or NIH or SSA to treat us with respect when we can't even treat one

another with respect?