Re: ampligen

[Guest guest]

From my own experience with the trials of this drug, I felt like nothing

more than a " number " every time I went down there for tests. They don't

give you an adequate explanation of everything, they try to get you to put

down in writing that you are really worse than you feel, etc. Some of these

test results may be quite slanted to say the least. Needless to say, my

comfort level was so low, I decided to drop out of the test.

Hemospherix should be made to disclose everything. However, remember the

livelihood of the company is at stake.

However, I also point out that I participated in a test at Cedar Sinai on

FMS in Los Angeles, which was not conducted by a drug company. Their theory

was that FMS was caused in part by too much bacteria in the lower gut. I

have no doubt that the bacteria was a side effect of FMS, but not the cause.

Again, the doctors try and convince you after they have treated you that you

must feel somewhat better. These tests are doomed to convey false

information, because the doctors will do anything to support their premise.

Rmember - this is how they get their grant money.

Re: Re: ampligen

> From: GAILRONDA@...

>

> In a message dated 10/16/99 11:27:14 AM Eastern Daylight Time,

> schweit2@... writes:

>

> << What is the bottom line on amplegen? >>

> I didn't have the time to read all of 's post, but it should include

that

> no long term studies have ever been done on the Ampligen. Of the first 15

> patients in the United States, one is no longer alive, two have serious

> cancers (two different types) and none are well. Most are severely ill.

Dr.

> and many others from Hemispherx love to tell stories about how much

> the first patient, " patient 00 " was helped. In fact, Dr. had a

patent

> approved just last month that again mentioned her success. She is,

however,

> never, never, never been well and has gotten progressively worse. Those

> physicians that speak of her, and I've heard one lead investigator speak

of

> her while I was present, say she's out playing golf again and living her

life

> happily. It is a total fabrication but Patient 00, whose name is

> Kaiser, wishes it were so. She just went to a new physician well known in

> this field. When she showed up for her appointment, the physician

> immediately hospitalized her. Long term follow-up studies are not costly

nor

> are they difficult and yet have never been done. I remain very wary of

the

> drug and want much more information that are based on actual studies that

can

> be proven. The data is not yet there. An ME specialist in England, as

well

> as a patient and the advisor to the largest national suppport group in

that

> country has said he would not take the drug nor give anyone else the drug

> until much more data has been disclosed. (Dr. Shepard.)

> Gail

>

> > This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

In a message dated 10/18/1999 11:00:15 PM Pacific Daylight Time,

schweit2@... writes:

<< HHV-6 (which

is one of the things that we probably have) predisposes you to cancer >>

Hi !

Are there good placebo controlled studies showing that pwcs get more

cancer? If so, could you please give me some references? What kind of

cancer?

[Guest guest]

GAILRONDA@...

> I didn't have the time to read all of 's post,

> but it should include that no long term studies have

> ever been done on the Ampligen. Of the first 15 patients

> in the United States, one is no longer alive, two have

> serious cancers (two different types) and none are well.

Oh my, Gail. Actually, there have been long-term studies on Ampligen,

except they are all taking place in Belgium. De Meirleir has follow-up

studies in process. And it is my understanding that Levine is in

the middle of doing a follow-up study on the Ampligen trials.

I corresponded with several patients from the first studies, and two

told me to go for it -- that Ampligen had improved their lives

significantly. A third said that the hell of having to go off it (when

the FDA didn't approve it and Hemispherx quit giving it out -- an

ethical issue, but that's a DIFFERENT problem) made it -- to him -- not

worth having gone on it. He was on it the least amount of time of the

three I talked to. I also corresponded with Belgian patients. I know

some for whom Ampligen worked, and some for whom it didn't.

I don't know a single soul who has been completely cured by Ampligen.

This is sad, but true. But those of us who have had positive

experiences with it have had dramatic changes in what we are able to

do. For me, it gave me my MIND back. Which was the worst part of the

disease. And I can WALK! It's wonderful! And de Meirleir has had

success putting patients back on Ampligen if they develop problems again

a few years down the road.

Gail wrote:

> Most are severely ill.

You say there have been no long-term studies. So how can you tell me

" most are severely ill. " ???? Where does your information come from? Do

you want to share it with me? That is not the information I have --

EXCEPT that patients who only received the drug for six months did not

have significant long-run effects. That is why I personally decided to

stay on it at least a year.

Thank you for sharing Kaiser's opinion with us. I'm very sorry

about that. I'd like to more about it. It's sad. So many CFIDS

stories are sad. But if you mean that her story is the basis of all the

positive information we have about the disease -- well, it isn't. If

she has asked individuals no longer to refer to her, and they still do,

that speaks volumes about their personalities, but there's not much I

can do about that, either. (Although next time I speak to someone from

Hemispherx I will mention it to them.)

I refer you to Tim Kenny's book, " Living with CFIDS, " for someone who

HAS done well on it. Another patient I talked with would not want his

name released, but it was for him the diference between being a total

blob and being able to have a life. He was enthusiastic about my taking

it. (I never met a woman who took it in the 1991 study!!)

Understand that if you are someone who used to go 125%, ending up at

80%, which the CDC calls " cured " (I don't!) is a pretty significant

dropoff from what you THOUGHT was " normal. " But it's a damn sight

better than where I was -- and deteriorating.

As for cancer -- I had not heard of a second cancer patient; that is

sad. However, this is an age group that gets cancer, and HHV-6 (which

is one of the things that we probably have) predisposes you to cancer

(yikes!, but true).

I do know that the one cancer patient you referred to earlier had

specifically asked you NOT to use his name (which you did in your

newsletter) and specifically told you that HE didn't think it was due to

Ampligen. One should respect those things. Or, what's the difference

between your using HIS information in a way HE doesn't want it used --

and the Hemispherx people talking about patient 001 when she doesn't

want HER information used? (and perhaps distorted)?

> I remain very wary of the

> drug and want much more information that are based on actual

> studies that can be proven. The data is not yet there.

Fair enough, Gail. You're the person that the 516 patients are going

through what they are going through for.

And -- if you are wary -- don't go on it!!!

But why don't you WAIT until that study is completed and the research

released?

The institutional structure of these experimental studies is just

godawful. It's no way to run research. But it's all we have.

I know you feel that what I say should be balanced by an equal dose of

negativity. But -- what I am talking about happened to ME, to me

PERSONALLY. You are talking about things that you have been told

happened to other people.

If I am positive about it -- well, I have a right to be positive about

it!! Ask my family!

I also think (hope) most people understand that because I am doing well

on it, does not mean everybody is going to. Or that they will.

But it is HOPE. SOMETHING works for SOME of us. That is HOPE, Gail.

We need hope.

What your subtext really is is NOT the simle " I'm not sure that it does

any good, " but " I think this is a dangerous drug. " That's what you're

trying to say, with all this talk about cancer and deaths (suicides).

Now, that's a serious charge! ly, you haven't a single statistical

study to go by to say it. Until you do, I wish you would just quit it.

I have news for you. Chemotherapy is ghastly -- but if I have breast

cancer and I have to go on it, I'll go on it. Maybe you wouldn't.

That's your choice. Let me have my choice.

Feel free to say, " I won't take it until there's more evidence out there

that it works, and there are more people so we can tell whether it's

toxic. " Fair enough. But DON'T tell people that it's secretly toxic or

secretly dangerous, at the same time you say there are no long-run

studies. This is a serious matter.

Are you going to tell me there is NO evidence of ANY problems with

transfer factor?? Ever?? NO evidence of any possible problems with

heparin? NO evidence of any possible problems with interferon? Adverse

reactions happen and are a part of studies.

The issue to be concerned about with experimental drugs is TOXICITY --

loss of an organ or life.

Marc Cavaille-Coll of the FDA said -- at the CFSCC meeting last April --

that there was NO EVIDENCE OF SERIOUS TOXICITY with regard to Ampligen.

He's still not fast-tracking it; he wants to see how the Phrase III

comes out -- but he stated that it passed all the criteria, and one of

the criteria is NO EVIDENCE OF SERIOUS TOXICITY.

You don't have to take it. But let's quit with the rumors and let the

statistics speak. Other than that, let those of us who are trying an

experimental drug talk about OUR experiences, and leave it to others to

talk about THEIRS.

Schweitzer

mailto:schweit2@...

[Guest guest]

I'm curious as to why we haven't heard about any " high profile " CFIDS

Patients (such as Ackers --the USA World Cup Women's Soccer Star),

or " other well known CFIDS Celeb's " read----> with a lot of $$$ available to

them for treatment options and alternatives......why haven't THEY tried

Ampligen and are touting it's benefits? It just seems weird that's

all......all that money lying around with the miracle cure just over the

horizon.....

[Guest guest]

In a message dated 10/19/99 2:00:11 AM Eastern Daylight Time,

schweit2@... writes:

<< Oh my, Gail. Actually, there have been long-term studies on Ampligen,

except they are all taking place in Belgium. De Meirleir has follow-up

studies in process. And it is my understanding that Levine is in

the middle of doing a follow-up study on the Ampligen trials.

Again, there have been NO long-term studies of Ampligen. Period. There may

be ones that have been said to have taken place. but there is no proof of

that...no medical journal peerl-reviewed study showing a long-term trial. De

Meirleir has said many things, but he has produced no proof, published no

proof, and not one patient has ever been contacted from a long-term trial

that has mentioned this, when questioned, to those who have done surveys.

Not one. when slides were shown of one follow-up in progress, many

researchers complained that the slides were shown so quickly that they could

not decifer any of the material at the last AACFS and it told them nothing.

The newly elected president of the AACFS was one of those who mentioned this

as well as others.

If Levine has been doing follow-up studies, he has not announced this,

has not finished, has not contacted many people, has not published.

I corresponded with several patients from the first studies, and two

told me to go for it -- that Ampligen had improved their lives

significantly. >>

There were only 15 in the first study. Of those, one is dead and two have

terminal illnesses and none are doing well now. None have been contacted for

a follow-up. They are all in communication with one another today and this

would be known if only half were contacted to find out.

Gail

[Guest guest]

In a message dated 10/19/99 7:27:29 AM Eastern Daylight Time,

SWNGDABOAT@... writes:

<< It just seems weird that's

all......all that money lying around with the miracle cure just over the

horizon..... >>

's doctor does not reccommend Ampligen to any of his patients with

CFS. That is probably true of most high-profile patients. There was one

extrememly wealthy person who tried Ampligen many years ago. She got it

without being in a trial and before " comopassonate care " that really means

pay-as-you-go was available. She is still bedridden and found it to be of no

help. She, too, has never been contacted for any long-term effects.

Gail

[Guest guest]

Hey---if it's bat crap and it works--I say go for it--as long as it's

legitimately studied and clinical trailed before hand!

[Guest guest]

In a message dated 10/19/1999 2:02:25 PM Eastern Daylight Time,

mgrahn@... writes:

<< There is FAR too much suffering in our CFS community already without

having to worry about those in your own

camp trying to stop you from getting a treatment that helps. I will NEVER

understand that one.

>>

Marcia,

Well said...I like that attitude. There is far too much suffering going on

to bicker , I say whatever works for that person..please do it!

Come to think of it, who among us would not go into a field and eat cow

manure if we thought for one second that it might help.

[Guest guest]

wrote:

> Hi !

> Are there good placebo controlled studies showing

> that pwcs get more cancer? If so, could you please

> give me some references? What kind of cancer?

, there haven't been good placebo controlled studies of much of

ANYTHING with regard to CFS!

In a " controlled study, " you have a group with the condition being

studied, and another group without it. You give both groups the drug or

treatment being considered, and then watch what happens. If the

improvement in the diseased group isn't statistically different from the

improvement in the " control group " (the people who don't have the

disease), then the conclusion is that the drug/treatment wasn't really

effective. When they talk about a " placebo, " they mean an even further

controlled study -- one group is given the treatment, the other given a

" placebo " -- traditionally a sugar pill. Neither group knows which they

are getting. If the first group improves, but the second group also

improfves to the same amount, then they attribute the improvement to the

" placebo effect " -- that somehow THINKING you are going to get better

will actually make you better. (That's what is going on with the Phase

III " double blind " studies of Ampligen right now.)

I think they take the concept of " placebo effect " WAY to far when it

comes to testing in the U.S. if they really believe a " placebo effect "

can cure cancer -- well then, why both with drugs or hospitalization or

surgery at all? Why not tell everybody they're going to get better and

forget about it? The whole concept of " placebo effect " is insulting --

particularly with regard to our disease!

When you're talking about the likelihood of developing one disease

because you have another, you can't use a " placebo " . What they do is

take a group of people who have the disease, and follow them long-term

to see if they develop conditions different from tnhose in the normal

population.

The problem for us is that when a person with CFS develops another

condition, the CDC concludes they were " misdiagnosed " in the first place

-- AND DROPS THEM OUT OF THE STUDY ENTIRELY!! I don't know the extent

to which it has changed, but back in 1996 I asked a number of CFS

researchers what they do when a patient in their study develops another

disease -- say, a heart condition, or MS. They all said -- we drop them

from the study, because they no longer fit the definition of CFS.

!!!!!!!

What that means is that if there are conditions that are COMPLICATIONS

of having CFS -- if it makes us more vulneable to cancer, or MS, or

lupus, or heart disease, or ANYTHING -- there's no way to know because

NOBODY HAS BEEN KEEPING THE STATISTICS!! To my knowledge, that hasn't

changed since I asked in 1996.

I asked Reeves why they didn't include patients with these conditions in

his Wichita study -- just add another variable! He said it wouldn't be

" scientific. " That MIGHT make sense if you are talking about a LOT of

variables in a test which doesn't have very many subjects -- but when

you are collecting a data set, the rule of thumb is to include

everything that you can -- later on, when you put the model together,

you can decide what you don't want to include. But that means when you

learn somethign new, you can go back and redo the study because you

still have the information. By throwing the information out, they have

wasted all this time, all this money, all these chances to find out what

happens when you have CFS/M.E. for a long time.

(Note how they always phrase it: there is " no evidence " that patients

with CFS/M.E. are more likely to commit suicide. There is " no evidence "

that CFS leads to cancer. There is " no evidence " that CFS leads to

heart problems. Well, yeah. But then again, there is no evidence that

CFS patients AREN'T more likely to commit suicide, there is no evidence

that CFS DOESN'T lead to cancer or heart problems. There is no evidence

EITHER WAY. You have to collect the evidence for there to BE evidence,

and nobody is collecting it!!!

The only thing you could do right now would be to run simple

correlations -- that is, try to get a sample of patients who have been

diagnosed with CFS/M.E. at some time in their lives, and write down what

else they have been diagnosed with since then -- then compare that list

with a list of normal people. It wouldn't be very rigorous, but it

would be a start.

So the thing I said about cancer comes not from CFS research -- there's

no way to tell! If somebody develops cancer, they pitch them from the

study and leave no record as to why! -- but from research about HHV-6.

HHV-6a has been " implicated " in several forms of cancer -- and I can't

really remember them all, except that one of them is uterine cancer, and

it's the reason that Neenyah Ostrom is convinced that Gilda Radner

really died from CFS (the CFS would have included an HHV-6a infestation,

and the HHV-6a infestation, untreated, led to the cancer that killer her

-- it's kind of far-fetched when you first read it, but the evidence on

HHV-6, CFS, and cancer, does make you wonder.) I have to admit I

thought Ostrom was off her rocker when I first read that -- but now that

I know more about HHV-6, I see where she was coming from.

I don't have time to research it now. If I get time, I'll try to find

the studies that talk about HHV-6a and cancer. But there is a lot that

has been written about viruses causing cancer -- and if, for at least

some of us, the cause of CFS is an inability to adequately defeat

viruses, then draw the conclusion yourself. As I said before -- ugh.

Schweitzer

mailto:schweit22ix.netcom.com

[Guest guest]

SWNGDABOAT@... wrote:

> From: SWNGDABOAT@...

>

> I'm curious as to why we haven't heard about any " high profile " CFIDS

> Patients (such as Ackers --the USA World Cup Women's Soccer Star),

> or " other well known CFIDS Celeb's " read----> with a lot of $$$ available to

> them for treatment options and alternatives......why haven't THEY tried

> Ampligen and are touting it's benefits? It just seems weird that's

> all......all that money lying around with the miracle cure just over the

> horizon.....

How many celebs have you heard touting interferon???? I haven't heard any, but

still consider it a valuable treatment for some, I'm sure you would be the lst

to agree. I don't think anyone has a

right to take away or condemn a treatment that works for any of us, including

yours. There is FAR too much suffering in our CFS community already without

having to worry about those in your own

camp trying to stop you from getting a treatment that helps. I will NEVER

understand that one.

I have never tried Ampligen or Interferon, don't really think I'd be a serious

candidate for either one, and have heard of SO many people (even on this list)

that were made sicker by interferon.

Yet every time I hear a success story like Clements or s, that people

are getting their lives back with their own special treatment that works for

them I get new hope that someday my

suffering will be relieved too, who wouldn't want that for all CFSers???

Marcia

[Guest guest]

>From: SWNGDABOAT@...

>

>Hey---if it's bat crap and it works--I say go for it--as long as it's

>legitimately studied and clinical trailed before hand!

>

And this from an interferon success story!! And I'm right behind you, !

Christie

[Guest guest]

Hi,

Thank you so much for expressing these sentiments. We DO need each other,

whether it is to offer the cow stuff or any other treatment - LOL!

In addition, I think that the various causes of our mystery illness(es) are

also an important to the treatment component and are worthy of discussion.

It is in great part due to Nelly that I have been re-diagnosed and will be

treated for lyme disease as of today! In addition, I do have the go-ahead

from new doc to use the low-dose interferon for sjogrens and FMS, and I

wouldn't have that if not for this list.

I am grateful for this list and am glad to see things coming together here

- so let's all pat each other on the back and keep hanging in, OK?!

Take care,

Christie

>From: Scampy1@...

>

>In a message dated 10/19/1999 2:02:25 PM Eastern Daylight Time,

>mgrahn@... writes:

>

><< There is FAR too much suffering in our CFS community already without

>having to worry about those in your own

> camp trying to stop you from getting a treatment that helps. I will NEVER

>understand that one.

>

> >>

>

>Marcia,

>

>Well said...I like that attitude. There is far too much suffering going on

>to bicker , I say whatever works for that person..please do it!

>Come to think of it, who among us would not go into a field and eat cow

>manure if we thought for one second that it might help.

>

>

>

>>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

[Guest guest]

what is the name of the Dr. in Hollywood fl?

thanks

Steve

[Guest guest]

I share your skepticism about amplegen. However does it not seem clear that

at least a few cfsers have benifited from it -- understanding that many have

not.

Steve

[Guest guest]

The doctor in Hollywood Florida is Dr. Keller. A friend of mine sees him.

[Guest guest]

Mike, Asensio hadn't even entered the field of Ampligen when the first

negative things about the drug came out. I doubt that any person with CFIDS

collaborates or cooperates in any way with this company, no matter how they

feel about the drug. However, it has been the position of some advocates of

Ampligen to ignore the adverse effects it has on some patients and to spread

the rumor that they are in collarboration with Asensio. I, in fact, was

accused of speaking with them at the last AACFS conference when Mr. Asensio

was there. I not only had no knowledge of what he even looked like, I was

not at the session where he spoke!

Gail

[Guest guest]

In a message dated 10/31/99 12:47:34 PM Eastern Standard Time,

jim_toomey@... writes:

<< Would you happen to know

if any of the feedback PWCs are such? >>

I didn't collect the initial information, Jim. I do know a few that were

interviewed and I know that at least had the testing, but I have no idea what

the results were.

Gail

[Guest guest]

Gail wrote:

<<While we would like the drug approved so that every patient, rich or poor,

could have the choice of trying it if they want to, we feel that ignoring the

facts are much more serious and put the patient FIRST. Only the truth will

do that and everyone is awqre of how little there has been of that with this

particular company. >>

Gail,

You make some interesting points, but can you really claim to be representing

patients by throwing another wrench into the wheel of a company and a drug

testing process that has been in the works since 1983? How are we ever going

to have access to this drug if people are fighting so hard against it? I

think it is important to present the pros and cons of the drug, of course,

but for most of us, these facts are simply irrelevant, because we can't GET

the drug, and we will never be able to get the drug if the company is pushed

again to near-bankruptcy. I would personally rather have access to the drug

first, then make my own choices based on the information I hear, and the

information I would like to base it on is case reports from actual patients.

What I do know is this - I have been sick for almost eight years. ALL of the

drugs which have been tested for CFIDS have been found to be most effective

for people who have been sick 7 years or less. I would prefer to have the

option of this drug, rather than face further decline due to ridiculous

infighting between people in the CFIDS community jousting for power or

promoting a particular agenda. Many drugs come with known risks. Tricyclic

antidepressants, for one, are known to sometimes cause heart problems, yet

they are prescribed far and wide to CFIDS patients, even though their

positive effects are few and some doctors - most notably Dr. Lerner - have

already found evidence of cardiomyopathy in CFIDS patients. I doubt very

much that most people taking ampligen are militant activists for the cause of

the drug - they are people who borrowed againt the mortgages on their homes

to afford it, gave it considerable thought, and did it after evaluating

risks. I think those who champion the drug's positive effects tend to be

those who are doing better on it, and their stories are important because we

all need a sense of hope.

Some people with CFIDS are so sick that they would rather risk death by

trying a potentially harmful drug than doing nothing. People who think

Ampligen is too harmful to try, based on what they hear and read, need not

try it. Those who have weighed the risks and want to try it should be able

to make that choice. I don't want anyone making that decision for me. What

people with CFIDS are lacking, in all areas, is options. I think the role of

leadership in this community should be to work together to grant people MORE

OPTIONS. If there's one thing all of us should know from this experience,

it's that we can't generalize our experiences. Cheney was touting Immunocal.

I took it and it made me much sicker. What helps some causes adverse

affects for others. We all know this. This is why we so desperately need to

make individual choices.

Peggy

[Guest guest]

In a message dated 11/1/99 4:58:15 PM Eastern Standard Time,

Peggomatic@... writes:

<<

You make some interesting points, but can you really claim to be

representing

patients by throwing another wrench into the wheel of a company and a drug

testing process that has been in the works since 1983? >>

Peggy, do you really think I have the ability to stop the drug or cause it to

be fast-tracked? The information was from patients who had the experiences

and are still suffering today. The company is supposed to say nothing about

the drug and make no claims until it has been approved. Some of this

information comes directly from the FDA and the company has been warned

repeatedly but only stopped for two years. I feel the patient should be able

to hear all sides and make up their own minds. Instead, they have spread

lies and rumors. They even did this to one patient who is deceased, which is

the lowest, in my opinion, one can go, claiming that this woman was depressed

before she took Ampligen. Even her own doctor stood up to dispute that one.

Many patients do want all the facts. Some do not. For those that want to

hear the truth, I will continue to print it as well as to print others that

tell the truth. In the same issue as this article was one from Jay

Goldstein, M.D., another from Hillary , author of Osler's Web (and

many did not like the truths she told in that book as well) and many others.

But don't think a large company feels threated by me telling the truth. It

isn't true.

Gail

[Guest guest]

In a message dated 11/1/99 6:55:46 PM Eastern Standard Time,

mgrahn@... writes:

<< but without fear of attack. >>

Marcia, in the past month, I asked just one question and several answered my

query. All other posts have been in reponse. If you go into the archives,

you will see that all of mine have been responses to others.....and, you're

right, I did feel attacked.

Gail

[Guest guest]

Gail wrote:

> Peggy, do you really think I have the ability to stop the drug or cause it

> to

> be fast-tracked? The information was from patients who had the

experiences

Consider that Gail understands that if she were speaking anything other than

the truth, the whole truth and nothing but about ampligen, that would

sue her for millions immediately. We can absolute confidence and trust in

Gail's reports about ampligen in the absence of legal action by .

Bonnes

[Guest guest]

shari dodd wrote:

> Perhaps " ampligen " needs a list all of its own.

Shari may have a point! Actually the trials on Ampligen underway must

be going smoothly since we aren't hearing any bad " feedback " about it.

I suggest it would serve us all better to wait until these " blind "

tirals are done and the results published so we can actually hear from

more people who have experienced it PERSONALLY good or bad. Those

people are not allowed to discuss the treatment until its over as

speculation over who is really getting the drug and who isn't would just

confuse the issues........its not at all fair to attack a group of

people trying a drug who are NOT ALLOWED to respond or defend

themselves.

Since its not available to us mainstream yet anyway, we are probably

getting all excited prematurely. I, however, will not be any part of

trying to destroy the drug, the company, its users or any of their

reputations. Let them all stand on their own merits.

Gail we have heard this same story from you again and again and again on

this list and all it does is put people in a mode to have to argue and

defend themselves and then we lose good listmembers because NO ONE wants

to feel attacked all the time.

I would love to see the orignial intent of this list, to speak of our

OWN personal experiences with experimental and/or other

treatments........but without fear of attack.

Marcia

[Guest guest]

<<

Why would anyone want Ampligen approved if it is harming them with all the

" adverse reactions " you keep alluding to - such as strokes, pain requiring

morphine, required tube-feeding, suicides, in general making their health

worse than before treatment ?????? >>

Hi everyone...

Ive been on ampligen for 10 months now in the 511 cost recovery trials in

Florida, and all I want to say about any of this is that we each need to

make informed descions for ourselves, this is true. However, it is my

personal opinion that we each have the right to make that decision in our own

way. Whoever does not want the drug, I have one thing to say to you. Dont

take it. But, do not try to ruin it for those who desperatley need it. It

is we in these trials who are paving the path for the rest of the community

to have that choice. It is we who are making the sacrifices and mortgaging

our homes, and taking the medical risk. No one forced us to do this. We

each made that informed descion. May I suggest that to those of you out

there who really want to try ampligen but are sceptical, to wait until

approval. Wait till all the records are set straight and the data out. And

those of you who want to make it difficult for those of us in the CFIDS

community trying to get some results and the first and only drug passed for

this illness to please, sit back and wait for all the information to come

out. In the end there is only one who will decide the fate of ampligen, and

that is the FDA.

It has not been an easy time for any of us on these trials, believe me..but

if we didnt do this, who then will? It is impossible to find a cure when

funds are being diverted from studies, and when we are fighting eachother and

not the real enemies..the CDC and the NIH for not finding the cause of this

illness, for until there is a cause found, we all know deep inside, a true

" cure " will not be either. Just lets not make it any harder for those of us

who are willing to take the risks and make the path easier for those in the

future.

And by the way, in my 10 months on this drug, I have no had none of the

things stated above, nor do I feel I have been hurt by ampligen. As I stated

to some of you before both in private and here on this list..I am no longer

HHV-6 positive, my glutithione levels are normal now, DHEA normal. Thyroid

is now normal, and T and B cells are normal after 10 months on ampligen. I

am on no other drugs so that I can be pure for this study and really have

true results, that way I know for myself personally, that if I do get better,

it was the ampligen and not a combo of 25 other possibilities that did this.

My doctor tells me its all a matter of time till my brain tells my body that

I am no longer ill. I take no more pain killers. The only side effects I

experience is getting well. I have no personal interest in the drug...I do

not work for Hem, nor do I ever care to. I am not at dan 's study.

And the only thing I give a rats rear end about is how I can afford to

continue to take this medication..into the next year.

The funny thing about all this is that the very people who are trying to stop

the progress of this drug will be the very first to run to try it once

approved. And that in itself is a sad sad thing. So Like I said before, its

in the hands of the FDA. The truth will speak for itself in the end.

[Guest guest]

Peggy:

You should have the choice; but you are also entitled to know all of the

risks, and not

those risks that the drug company only wants you to know. There seems to

be a lot

of controversy over this drug and perhaps there is a good reason that the

controversy

exists. I too, believe that people should have choices, but I also believe

that the choices

must be informed choices. One can only have an informed choice, if he or

she is made

aware of all the facts.

At 04:57 PM 11/1/99 -0500, Peggomatic@... wrote:

>From: Peggomatic@...

>

>Gail wrote:

><<While we would like the drug approved so that every patient, rich or poor,

>

>could have the choice of trying it if they want to, we feel that ignoring the

>

>facts are much more serious and put the patient FIRST. Only the truth will

>

>do that and everyone is awqre of how little there has been of that with this

>

>particular company. >>

>

>Gail,

>

>You make some interesting points, but can you really claim to be representing

>patients by throwing another wrench into the wheel of a company and a drug

>testing process that has been in the works since 1983? How are we ever going

>to have access to this drug if people are fighting so hard against it? I

>think it is important to present the pros and cons of the drug, of course,

>but for most of us, these facts are simply irrelevant, because we can't GET

>the drug, and we will never be able to get the drug if the company is pushed

>again to near-bankruptcy. I would personally rather have access to the drug

>first, then make my own choices based on the information I hear, and the

>information I would like to base it on is case reports from actual patients.

>What I do know is this - I have been sick for almost eight years. ALL of the

>drugs which have been tested for CFIDS have been found to be most effective

>for people who have been sick 7 years or less. I would prefer to have the

>option of this drug, rather than face further decline due to ridiculous

>infighting between people in the CFIDS community jousting for power or

>promoting a particular agenda. Many drugs come with known risks. Tricyclic

>antidepressants, for one, are known to sometimes cause heart problems, yet

>they are prescribed far and wide to CFIDS patients, even though their

>positive effects are few and some doctors - most notably Dr. Lerner - have

>already found evidence of cardiomyopathy in CFIDS patients. I doubt very

>much that most people taking ampligen are militant activists for the cause of

>the drug - they are people who borrowed againt the mortgages on their homes

>to afford it, gave it considerable thought, and did it after evaluating

>risks. I think those who champion the drug's positive effects tend to be

>those who are doing better on it, and their stories are important because we

>all need a sense of hope.

>

>Some people with CFIDS are so sick that they would rather risk death by

>trying a potentially harmful drug than doing nothing. People who think

>Ampligen is too harmful to try, based on what they hear and read, need not

>try it. Those who have weighed the risks and want to try it should be able

>to make that choice. I don't want anyone making that decision for me. What

>people with CFIDS are lacking, in all areas, is options. I think the role of

>leadership in this community should be to work together to grant people MORE

>OPTIONS. If there's one thing all of us should know from this experience,

>it's that we can't generalize our experiences. Cheney was touting Immunocal.

> I took it and it made me much sicker. What helps some causes adverse

>affects for others. We all know this. This is why we so desperately need to

>make individual choices.

>

>Peggy

>

>>This list is intended for patients to share personal experiences with each

>other, not to give medical advice. If you are interested in any treatment

>discussed here, please consult your doctor.

[Guest guest]

Gail-

Good for you.

At 06:48 PM 11/1/99 -0500, you wrote:

>From: GAILRONDA@...

>

>In a message dated 11/1/99 4:58:15 PM Eastern Standard Time,

>Peggomatic@... writes:

>

><<

> You make some interesting points, but can you really claim to be

>representing

> patients by throwing another wrench into the wheel of a company and a drug

> testing process that has been in the works since 1983? >>

>Peggy, do you really think I have the ability to stop the drug or cause it to

>be fast-tracked? The information was from patients who had the experiences

>and are still suffering today. The company is supposed to say nothing about

>the drug and make no claims until it has been approved. Some of this

>information comes directly from the FDA and the company has been warned

>repeatedly but only stopped for two years. I feel the patient should be able

>to hear all sides and make up their own minds. Instead, they have spread

>lies and rumors. They even did this to one patient who is deceased, which is

>the lowest, in my opinion, one can go, claiming that this woman was depressed

>before she took Ampligen. Even her own doctor stood up to dispute that one.

>Many patients do want all the facts. Some do not. For those that want to

>hear the truth, I will continue to print it as well as to print others that

>tell the truth. In the same issue as this article was one from Jay

>Goldstein, M.D., another from Hillary , author of Osler's Web (and

>many did not like the truths she told in that book as well) and many others.

>But don't think a large company feels threated by me telling the truth. It

>isn't true.

>Gail

>

>>This list is intended for patients to share personal experiences with each

>other, not to give medical advice. If you are interested in any treatment

>discussed here, please consult your doctor.