Re: Ampligen and its enemies

[Guest guest]

In a message dated 10/31/99 9:01:11 PM Eastern Standard Time,

schweit2@... writes:

<< But I find it appalling that a so-called patient advocacy organization

would try to slow up -- or even curtail -- the process of having a drug

approved WHEN SO MANY OF US ON THE DRUG WANT TO REMAIN ON IT.

If you have information to provide me -- HARD information, NAMES,

PLACES, DATES -- formally collected statistics -- studies -- please do. >>

The National CFIDS Foundation did not do this study. We believe in getting

the entire truth out to the PWC community. This was taken from over 60 pages

of information that was given to the FDA. They, in turn, have investigated

many of the reports. The NCF is neither in favor nor opposed to any

research, but we are most in favor of letting the patient have all the

information that is available so that they may make an educated choice with

more information with which to do so. Although the report gave names and many

other personal data, I felt it was unnecessary to expose patients this way in

order to let them have the information. When a patient is considering a

trial of Ampligen, we will put them in touch with patients who have

documented cases if that patient has given their own permission and if the

patient is able to do so. The CAB got derailed not because 6 advocates

didn't want to see Ampligen tested correctly, but because they wanted all

accurate information to be given to the patient. All information in that

report was gathered by Clement, who, the last I heard, was on the

payroll of Hemispherx. She was gathering the information for the CFIDS

Association of America who had agreed to print the results of the survey.

They backed down on this after receiving a letter from a lawyer who indicated

he represented Hemispherx and threatened them with a lawsuit if they printed

the information. The letter stated that they had no right to interview these

patients since they were being treated, or had been, by Hemispherx and it was

" priviledged " information.

Not only did the CFIDS Association back down, they, instead, printed an

article where Dr. Strayer, from Hemispherx, answered written questions, and

only gave his very tainted version of facts. Patients have a right to know,

when they are thinking of joining an experimental trial, that others have had

adverse reactions. They have a right to know both the good and the bad.

Hemispherx is not supposed to " promote " their product while undergoing an FDA

trial. We've seen lives totally destroyed by the drug as well as patients

doing better on the drug. Every patient has a right to know the risks

involved and not be lied to. Investigators have lied to prospective trial

patients. That is something we will not tolerate.

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.....who will continue to print the truth and has the facts to back it

all up in the patients own words.

[Guest guest]

In a message dated 10/31/99 10:11:05 PM Eastern Standard Time,

bgrommes@... writes:

<< We must use facts carefully -- thank you for championing that standard. >>

Bob, if one were really championing the facts, wouldn't they push for a

long-term study of past patients? 's Karnofsky scale is certainly

higher today, but what caused her heart problems? Did any other patient that

was on Ampligen develop the same problems or was this just a coincidence.

is presently hospilized. If you read Dr. 's (president and CEO

of Hemispherx Biopharma) latest patent, you will read that was totally

cured and back playing golf. (She was a ranked player.) It is totally

untrue, but several Ampligen investigators will tell the same story and, even

when corrected, will continue to repeat it. Is this championing facts? Have

they reported on how many Americans went to France to try Ampligen in

Beligium and how those Americans are today? Have they told you of the

Americans who went to Canada and what happened to them? Have they ever

substanciated any of the glowing data given out. Patients want so much to be

better. Is this a reason to give them half-truths or lies?

Gail

[Guest guest]

Ampligen and its enemies

> From: Schweitzer <schweit2@...>

>

> This is NOT a good time to have to deal with " (FRONT PAGE)AMPLIGEN

> REPORT EXPOSED:PATIENTS DUPED By Gail Kansky and Cheryl Tai, " which

> appeared in the National CFIDS Foundation's newsletter, the Forum, as I

> am getting ready to go to the CFSCC meeting in Washington, D.C., on

> Tuesday.

,

Your points are superbly well-reasoned as always, and I appreciate you

bringing some common sense to this discussion once again.

I think that Kaiser, patient 00 in the original trials, should be put

into perspective as well. She started the original trials with a Karnofsky

score of 10 (reported by Dr sen at an 11/1990 conference in Charlotte,

and written up in the CFIDS Chronicle, Spring 1991). For those who don't

know, a Karnofsky of 10 is defined as " near death " . Ampligen treatments

could have tripled her to a Karnofsky of 30, and she'd still be in pretty

awful shape. Is she near death now? No? Then that would be a score of at

least 30 -- " severely disabled; hospitalization required but death not

imminent " -- and as horrible and tragic as that is, it would still 3 times

better than she started out. Even if she *is* now near death, it would be

biased and misleading to suggest that her present condition is Ampligen's

fault, because for all practical intents and purposes she is no worse off

post-Ampligen than pre-Ampligen, at least by this particular measure of her

condition.

I'm not suggesting that this is the final and definitive word on 's

Ampligen experience. I am simply pointing out that one could build a

convincing case either way, if one were determined to.

We must use facts carefully -- thank you for championing that standard.

--Bob Grommes

[Guest guest]

Can I ask a question? How come Dr. requires $800 to get thru the

door to see him---even if it's a 2 year wait to see him and even if your not

put on Ampligen and even if you have insurance???

[Guest guest]

In a message dated 11/1/99 10:31:47 AM Eastern Standard Time,

bgrommes@... writes:

<< That's basically the question I am posing to you. You have excluded from

consideration in your " study " a key Ampligen research site, run by a man of

demonstrated integrity who is deeply committed to PWCs and probably the

leading authority on Ampligen, and apparently all of his patients. To me

this does not demonstrate objectivity.

If this has been left out, it is not due to lack of objectivity. I do not

" surf the web " and , due to time constrictions, spend little time on it. But

without legitimate long-term studies, which take little time and less money

therefore having no excuses not to be done, there is no reason not to be

concerned. It seems curious that simple things have not been done.

It sounds more like you are simply

dismissing any person, group or ogranization that disagrees with you. Your

article in the Forum attempts to raise doubts but sheds no light. I would

rather see the factual documentation behind the article. >>

We have written and included many patients who have done " well " but have

never found a patient who had recovered from this drug. Our article in the

recent edition was reporting on a lengthy report sent to the FDA. I've given

you a contact who may allow you the entire document, but I feel there are too

many personal items in that report to allow it to be made public. There is

no need to expose patients to this as it serves no purpose. Since Hemispherx

has breached the FDA code so many times, it seems much more prudent to want

hard data. Our article stated that we would be happy to put any patient

considering Ampligen in touch with a member who participated in this survey

but we will not give out the original papers. This has been done for you and

all others who have asked. Our interests are primarily to protect the

patient and they seem to be at odds with the interests of a small group of

patients as well as with the manufacturer.

[Guest guest]

In a message dated 11/1/99 10:54:54 AM Eastern Standard Time,

lindag@... writes:

<< Gail's response was: " Most of them are now too sick to even talk on the

phone due to their adverse reactions to Ampligen, " and Gail gave us the

name of only *one* Ampligen patient. We feel one person is not really

enough on which to base an informed choice about such an important matter.

(Nearly everything else we had heard from other Ampligen patients has been

positive, hopeful or at least neutral - no significant problems caused by

Ampligen).

Four of the first five patients on Dr. Lapp's trial are on morphine

and are not able to fend calls. It seems that you do not understand how

" adverse " the reactions can be. One now has to be tube-fed. It isn't

difficult to find out who these patients are, but I'm not in the habit of

giving out a patient's name if they are too ill to even speak to others.

(And won't.) I had seven who had offered to talk to any PWC contempolating

Ampligen, but that has dwindled down to just one who is also very ill, but

feels this is important enough. If you have spoken to several, why refuse to

contact one more. If you only want the cheery facts, you should be inquiring

no further. We prefer the truth.

Gail could also not put her hands on the " research report " . Hmmm...

You make it sound so suspicious. I was quite clear that I have recently

moved. I have been in this house for just two weeks and two days. There are

still many cartons unpacked. But I have, since, found the report. I won't

hand it out to anyone as it contains quite a lot of very personal information

that the patients have not given me permission to give out. It would have

never been given to me except that it was already made available to members

of the original CAB formation project so it was considered no longer

" private. " The number given to you was of a former study participant who

also has this file and has it on the computer (I never had it on mine) and

she may willlingly send it to you. But you haven't called to ask. But to

question why I couldn't " put my hands on it " is questioning my truthfulness

and I resent that.

Do you need the name of my moving company? My former address? This move is

made annually. It's not something new.

And the " adverse reactions " of Ampligen that the one patient

experienced?.... Well, read her story yourself

http://www.ndirect.co.uk/~dshearer/exp4.htm She got a bum deal - the

dosage of Ampligen she got in the trial wasn't enough and she wanted her

money back. That is indeed sad, she didn't get a fair chance to see if

Ampligen could help her... but even after all that she still says, " Now I

hear and read how all 5 patients being treated by Dr. with Ampligen

have improved, and I can only wonder if I might have improved as well. "

http://www.cfids-me.org/nonv-cfids/ampligen5/

Does this sound like a patient who has experienced serious adverse reactions

to Ampligen?

And what does Gail say about the 5 patients that improved on

Ampligen in her Ampligen survey in her newsletter, The Forum? That she

omitted these patients because they were, in Gail's opinion, " untruthful " .

The members of the original CAB formation project included only one of these

five, yet the interim board selected for this project was made up of several

of these patients whose interests seemed to be only fast-tracking the drug

regardless of any adverse reactions. While the rest of us were also in favor

of a speedy process, we did not want it to be one that would put any patient

at risk. When this was shoved off as not as important, some of us quit.

Those that withdrew because we felt the patients were not being placed first

are: Burns (CFS Electronic News), Ray Colliton (Co-Cure), Dr. Elaine

Katz (CFIDSERS), Galyle Babykin (WECAN), and Sheryl Jefferies (Chronic

Relief). I joined this group. I am not alone in wanted the truth and

wanting the patient to be put first, but I am alone in representing them in

this particular online group. We felt truth was more important for every PWC

than just a few that wanted only assurances that they could stay on the drug.

I'm beginning to wonder what Gail's definition of truth is here.

>>

That is a statement that should never appear online in a group, but you

should only listen if you really want the truth. Sometimes, the truth is not

all warm, cozy, and promising, but we give it out anyway along with the warm

fuzzies that everyone enjoys. We feel that getting to the bottom of it is

the only way to address what this illness really is and how to attack it

legitimately. If you only want the truth selectively, ours is not the

National Organization you really want to be a member of, because we feel

every patient is entitled to the truth whether it is good or bad.

This brings to mind a conversation I had with one of the large stock holders

of Hemispherx a few years ago, before there was ever a National CFIDS

Foundation and I was still the president of Mass. CFIDS. He, too, was

unhappy about my reporting on Ampligen since it contained the truth so

starkly. He asked me what my real objective was. I answered, " The truth. I

am not the only patient in my family and my daughter is far more severe than

I am. I want to know the truth. The real truth. " He looked stricken and

replied quietly, " You don't really want to know that. " But I did, still do,

and will continue to. I'm one of these cockeyed optimists who really

believed my high school motto which was written on our class rings, " Ane the

truth will set you free. " I still do.

Gail

[Guest guest]

In a message dated 11/1/99 11:28:15 AM Eastern Standard Time,

SWNGDABOAT@... writes:

<< Can I ask a question? How come Dr. requires $800 to get thru the

door to see him---even if it's a 2 year wait to see him and even if your not

put on Ampligen and even if you have insurance??? >>

...

I may have part of the answer to this....and it may seem strange that I am

defending Dr. and still advocating gaining the entire truth about

Ampligen before any other patient gets worse, but I respect him. (He was the

only Ampligen investigator at the AACFS who said that Ampligen (contrary to

what so many other investigators were saying) will only help a small subset

of patients.

The answer may very well be insurance. If he, like many other specialists,

see you for an initial visit, it may very well be a lengthy one and insurance

companies don't pay for an hours long visit. They expect a physician to wrap

everything up in about 15 minutes which is absurd when you have CFIDS/ME, so

many specialists charge an huge fee in order to not lose money.... This

may be why he charges so much. It actually is cheap compared to Cheney!

Gail

[Guest guest]

I did go into the website mentioned by . These are all current users of

Ampligen who personally want it approved so they don't have to pay out of

pocket.

<< http://www.cfids-me.org/nonv-cfids/ampligen5/ >>

The site mentioned 4 patients. Of those, two were on the CAB board that the

aforementioned members from other organizations quit. Another is the wife of

the man who does PR for Hemispherx BioPharma!!! That's hardly an impartial

group but it will provide you with just the warm fuzzies if that's all you

want and I fully understand that some patients only want the good news.

Gail

[Guest guest]

Re: Ampligen and its enemies

> Bob, if one were really championing the facts, wouldn't they push for a

> long-term study of past patients?

I don't know of anyone who has said, " long-terms studies are not required or

important " . In fact it's my understanding that DeMerlier, Levine and others

have them in the works, and I suppose others do too. I look forward to the

results of those studies when they are completed.

> 's Karnofsky scale is certainly higher today

Thank you.

> but what caused her heart problems? Did any other patient that

> was on Ampligen develop the same problems or was this just a coincidence.

People get heart trouble all the time, and are especially vunerable when

they are profoundly ill for years and years. Sure, they *could* be

connected, but it is not our place to jump to those conclusions.

> Patients want so much to be better. Is this a reason to give them

half-truths or lies?

That's basically the question I am posing to you. You have excluded from

consideration in your " study " a key Ampligen research site, run by a man of

demonstrated integrity who is deeply committed to PWCs and probably the

leading authority on Ampligen, and apparently all of his patients. To me

this does not demonstrate objectivity. It sounds more like you are simply

dismissing any person, group or ogranization that disagrees with you. Your

article in the Forum attempts to raise doubts but sheds no light. I would

rather see the factual documentation behind the article.

We want our options kept open. Let the approval process run its course as

it does for any drug. Let Ampligen succeed or fail on its own merits.

--Bob Grommes

[Guest guest]

Gail Kansky has stated in previous posts about Ampligen:

--- " Gail - who will continue to print the truth and has the facts to back it all

up in the patients own words " .

--- " Patients have a right to know, when they are thinking of joining an

experimental trial, that others have had adverse reactions. "

--- " When a patient is considering a trial of Ampligen, we will put them in touch

with patients who have documented cases... "

I am seriously considering entering an Ampligen trial, and since I *do* want

*all* the facts I can find to weigh the benefits vs. the risks, my husband and I

asked Gail for names of patients that had been harmed by Ampligen as well as a

copy of her " research document " that was sent to the FDA.

Gail's response was: " Most of them are now too sick to even talk on the phone

due to their adverse reactions to Ampligen, " and Gail gave us the name of only

*one* Ampligen patient. We feel one person is not really enough on which to

base an informed choice about such an important matter. (Nearly everything else

we had heard from other Ampligen patients has been positive, hopeful or at least

neutral - no significant problems caused by Ampligen).

Gail could also not put her hands on the " research report " . Hmmm...

And the " adverse reactions " of Ampligen that the one patient experienced?....

Well, read her story yourself http://www.ndirect.co.uk/~dshearer/exp4.htm

She got a bum deal - the dosage of Ampligen she got in the trial wasn't enough

and she wanted her money back. That is indeed sad, she didn't get a fair

chance to see if Ampligen could help her... but even after all that she still

says, " Now I hear and read how all 5 patients being treated by Dr. with

Ampligen have improved, and I can only wonder if I might have improved as well. "

http://www.cfids-me.org/nonv-cfids/ampligen5/

Does this sound like a patient who has experienced serious adverse reactions to

Ampligen?

And what does Gail say about the 5 patients that improved on Ampligen

in her Ampligen survey in her newsletter, The Forum? That she omitted these

patients because they were, in Gail's opinion, " untruthful " .

I'm beginning to wonder what Gail's definition of truth is here.

[Guest guest]

Re: Ampligen and its enemies

> From: SWNGDABOAT@...

>

> Can I ask a question? How come Dr. requires $800 to get thru the

> door to see him---even if it's a 2 year wait to see him and even if your

not

> put on Ampligen and even if you have insurance???

He doesn't. Who told you that?

We were just there last month for initial testing. We gave two checks to

sen's office. One for $125 to his office for his processing of blood

to ship to REDD Labs; and $220 payable to REDD labs for the test itself.

Insurance will not cover these. The consultation itself, treadmill test /

EKG / cognitive testing, etc., were all billed to the insurance companies.

The lab required payment up front on some tests, including Knox & Carrigan's

HHV6 tests ($295). Those payments are required by and paid to the labs, not

sen. Brain scans (MRI and SPECT) were done in Reno and that lab billed

insurance also.

We feel that it was worth every last cent in any case, as we got the most

detailed and thorough analysis / evaluation that has had in all the 23

years she has been ill with CFIDS -- and believe me, she has seen PLENTY of

doctors over the years.

--Bob Grommes

[Guest guest]

In a message dated 11/1/99 8:48:18 AM PST, bgrommes@... writes:

<< >

> Can I ask a question? How come Dr. requires $800 to get thru the

>>

It must be nice to have all that " up front " money.....

[Guest guest]

> From: GAILRONDA@...

>

> I did go into the website mentioned by . These are all current users

of

> Ampligen who personally want it approved so they don't have to pay out of

> pocket.

>

> << http://www.cfids-me.org/nonv-cfids/ampligen5/ >>

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 ??????

[Guest guest]

In a message dated 11/1/99 2:00:26 PM Eastern Standard Time,

mgrahn@... writes:

<< If everybody quit as soon

as they didn't get their way, I think that tells us who they were really

serving............personally I think its a shame they didn't get the CAB

going, then all this " talk " of protecting people

Marcia. the ones who resigned were never thinking of Ampligen as an option

for themselves. They quit only when the needs of patients, nameless ones.

were being overlooked. The others could have gone ahead and formed the CAB.

It was the AIDS person who put the kabosh on that as well as Hemispherx never

paying the bill for the Hotel as promised. Don't place blame where it isn't

warranted.

from Ampligen could have served some purpose..........I just can't see that

hating or threatening the people that do take the drug and do better serves

any productive purpose.........in fact seems

quite insane to me.......even with brainfog. Also seems horribly unethical

to me Gail for you to be using privileged information given to you to be a

part of the CAB formation (which you then quit

after taking this privileged information) to write anti-Ampligen stories

for your publication. Talk about a violation of trust.

This information did NOT come from the CAB nor was I at any meeting of for

the formation. The information came from a patient who was helping gather

these facts for the FDA. There was no violation of trust. The violation

would have only come if I divulged names that were asked of me when I had no

permission to do so.

Gail

>>

[Guest guest]

At 11:28 AM 11/1/99 EST, you wrote:

>From: SWNGDABOAT@...

>

>Can I ask a question? How come Dr. requires $800 to get thru the

>door to see him---even if it's a 2 year wait to see him and even if your not

>put on Ampligen and even if you have insurance???

>

Hi,

The local CFIDS doc charges $500 to walk in and the cost goes up from

there, and he takes no insurance. It is because people who have the money

and are desperate enough will pay. As far as Dr.P, is this part of the

trials or just to see him??

Christie

[Guest guest]

In a message dated 11/1/99 2:24:46 PM Eastern Standard Time, tab@...

writes:

<< Why won't these people speak out about their experiences - even through

another party if they are too ill to speak for themselves? >>

Each has a differerent reason. Most do not have a support system and very

little of one and can't take the calls. One is unable to now even hold a

phone, is not yet " of age " and her parents have all they can do to just care

for her. The debilitation of these patients that came on so suddenly is hard

to fathom and so very, very sad. I had one father of a patient call me

crying as he thanked me for getting out the truth. It has been devatating

for the ones who have found these reactions. They were severe before, but

nothing compared to what they are now facing. And, of course, I'm not in

touch with them all.

Gail

[Guest guest]

Dear Bob and all,

Thank you for the clear, consise information. It is what is needed in this

thread! I was going to suggest last night that this discussion be tabled,

but I see that members are handling it today. I don't like to halt a

discussion but I must ask that we not argue and cause hurt. It does seem,

as with other treatments, that what we know from those on ampligen is it

can help at least in some cases. And at this point that is all I can figure

out from all the conflicting info and bad feelings - which started long

before this list did.

CHristie

>From: " Bob Grommes " <bgrommes@...>

>

>> From: SWNGDABOAT@...

>>

>> Can I ask a question? How come Dr. requires $800 to get thru the

>> door to see him---even if it's a 2 year wait to see him and even if your

>not

>> put on Ampligen and even if you have insurance???

>

>He doesn't. Who told you that?

>

>We were just there last month for initial testing. We gave two checks to

>sen's office. One for $125 to his office for his processing of blood

>to ship to REDD Labs; and $220 payable to REDD labs for the test itself.

>Insurance will not cover these. The consultation itself, treadmill test /

>EKG / cognitive testing, etc., were all billed to the insurance companies.

>The lab required payment up front on some tests, including Knox & Carrigan's

>HHV6 tests ($295). Those payments are required by and paid to the labs, not

>sen. Brain scans (MRI and SPECT) were done in Reno and that lab billed

>insurance also.

>

>We feel that it was worth every last cent in any case, as we got the most

>detailed and thorough analysis / evaluation that has had in all the 23

>years she has been ill with CFIDS -- and believe me, she has seen PLENTY of

>doctors over the years.

>

[Guest guest]

Re: Ampligen and its enemies

> Hi,

>

>As far as Dr.P, is this part of the trials or just to see him??

>

> Christie

Our initial visit was not connected with the trials. I would expect the

costs I mentioned in connection with that are typical of any CFIDS patient

he sees initially; it's a process of establishing a baseline, an accurate

diagnosis, etc. Trial patients are, so far as I know, drawn from his

patient population, but only " selected patients " that he feels are likely to

respond well to Ampligen, based on his experience.

--Bob Grommes

[Guest guest]

> not in the habit of

>giving out a patient's name if they are too ill to even speak to others.

>(And won't.) I had seven who had offered to talk to any PWC contempolating

>Ampligen, but that has dwindled down to just one who is also very ill, but

>

Hi Gail,

Why won't these people speak out about their experiences - even through

another party if they are too ill to speak for themselves?

Thanks,

Christie

[Guest guest]

Re: Ampligen and its enemies

> I may have part of the answer to this....and it may seem strange that I am

> defending Dr. and still advocating gaining the entire truth about

> Ampligen before any other patient gets worse, but I respect him. (He was

the

> only Ampligen investigator at the AACFS who said that Ampligen (contrary

to

> what so many other investigators were saying) will only help a small

subset

> of patients.

Actually the exact quote from the AACFS conference summary is:

***

" Dr. stated at the session that his 12 years of experience

with 70 patients in Ampligen trials shows the drug to be safe and effective,

but that good responses are seen only in selected patients and it is very

important to select the right patients. "

***

" Selected patients " is quite different from " small subset " and he was NOT,

in context, minimizing the effectiveness of the drug but only expressing

that better screening criteria have been developed from his experience with

it.

--Bob Grommes

[Guest guest]

SWNGDABOAT@... wrote:

> From: SWNGDABOAT@...

>

> Can I ask a question? How come Dr. requires $800 to get thru the

> door to see him---even if it's a 2 year wait to see him and even if your not

> put on Ampligen and even if you have insurance???

Why on EARTH would you start attacking our so very few loyal CFS specialists????

Dr. did an EXCELLENT job last week on the TV show CNN/Time to the whole

world FINALLY giving us and our

illness the credibility we need and deserve in the public eye and now you want

to attack him???????????? Just because many of his patients are doing better on

Ampligen????

I really don't think this list should be used as a hate campaign against any

drug, drug company, or doctor, that is NOT what we are looking for here, and its

not helpful in any way.

If anybody really has concerns about Ampligen harming people, the CAB would have

the perfect solution to monitor the trials and represent the patients and

" protect them " . If everybody quit as soon

as they didn't get their way, I think that tells us who they were really

serving............personally I think its a shame they didn't get the CAB going,

then all this " talk " of protecting people

from Ampligen could have served some purpose..........I just can't see that

hating or threatening the people that do take the drug and do better serves any

productive purpose.........in fact seems

quite insane to me.......even with brainfog. Also seems horribly unethical to

me Gail for you to be using privileged information given to you to be a part of

the CAB formation (which you then quit

after taking this privileged information) to write anti-Ampligen stories for

your publication. Talk about a violation of trust.

I can't believe anyone would reject something that might give them 80 or 90% of

their life back because it didn't completely cure them when there is NO CURE out

there!!!!! Thats insane. Some

people have " progressive " CFS that just spirals downward, one can only assume to

death! If Ampligen can pull some of them out of that and break that cycle it

would be miraculous for them. If

others were not good candidates for Ampligen and their downward spiral of CFS

continued, how can you blame that on a treatment??????

I've never been to any of the docs mentioned, never taken Ampligen or been

tested, not affiliated in any way with any drug companies. This is just an

objective point of view from someone who

resents all the time, energy and money wasted on hate and vendettas when we

could be cooperating and moving forward toward a cure or more effective

treatments.....

Christie I really hope you won't allow this list to become a " forum " for

personal vendattas against any treatment, its users, doctors or companies that

are trying to help us!!! We are desperate

and need all the help we can get.

Marcia

[Guest guest]

Re: Ampligen and its enemies

> << >

> > Can I ask a question? How come Dr. requires $800 to get thru

the

> >>

> It must be nice to have all that " up front " money.....

What part of " no " don't you understand? does NOT charge $800 to

walk in the door, and I detailed precisely what he DOES charge in my

original response to this leading question. Please stop perpetuating false

rumors.

--Bob Grommes

[Guest guest]

At the risk of jumping into all of this, I have paperwork from Dr. 's

office and I believe the first visit is 300 or so dollars, not 800.

[Guest guest]

Let me add my 2 cents.

I was totally dismayed by the Amligen trial in Orange County. When I

inquired about the study, I

received a telephone call from the husband who worked for Hemispherix. He

informed me that they

would probably test me for the enzyme and if I still had the enzyme he

could help me get on the study

where I would pay for it to insure that I was receiving the correct drug.

When I inquired about the test for the Rnase-l enzyme, I was told that it

took a long time before they

got the results. Upon looking at my lab file however, it was noted that

the blood for the test hadn't been

properly frozen and the test would have to be redone. I was never informed

of the problem, nor did they take

any additional blood for the tests that I was informed of.

I finally decided that I could not travel 100 miles twice a week for the

next forty weeks and decided to go on the

paid study. I was able to get off the other study by walking for 18

minutes on the treadmill. I was sick for two weeks

after that ordeal. From discussions on the Internet I believed that the

drug costs would approximate $2,000 a month. Boy

was I mistaken. When I qualified for the paid study I was informed that

with the medical tests needed, the cost for administering the drug

and the cost for the drug itself, would approximate $4,000 per month. Who

has $50,000 a year to spend for a drug trial?

I sincerely hope for our sake that the drug works. However, I can state

wholeheartedly that

I was extremely upset with the test site, their disorganization and

follow-up. I certainly hope

that the evidence they gather and the conclusions therefrom are not based

upon faulty information.

12:30 PM 11/1/99 -0500, you wrote:

>From: GAILRONDA@...

>

>I did go into the website mentioned by . These are all current users of

>Ampligen who personally want it approved so they don't have to pay out of

>pocket.

>

><< http://www.cfids-me.org/nonv-cfids/ampligen5/ >>

>The site mentioned 4 patients. Of those, two were on the CAB board that the

>aforementioned members from other organizations quit. Another is the wife of

>the man who does PR for Hemispherx BioPharma!!! That's hardly an impartial

>group but it will provide you with just the warm fuzzies if that's all you

>want and I fully understand that some patients only want the good news.

>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]

It is amazing....Problems going on with a drug trial and the

only defense offered is that Gail shouldn't have conveyed information

given to her in confidence. If things are what they appear to be, especially

with drug trials, everyone has a right to know and the drug companies have

the responsibility and obligation to inform everyone at risk of the potential

problems. Peoples lives are at stake.

At 06:06 PM 11/1/99 -0500, GAILRONDA@... wrote:

>From: GAILRONDA@...

>

>In a message dated 11/1/99 2:00:26 PM Eastern Standard Time,

>mgrahn@... writes:

>

><< If everybody quit as soon

> as they didn't get their way, I think that tells us who they were really

>serving............personally I think its a shame they didn't get the CAB

>going, then all this " talk " of protecting people

>

>Marcia. the ones who resigned were never thinking of Ampligen as an option

>for themselves. They quit only when the needs of patients, nameless ones.

>were being overlooked. The others could have gone ahead and formed the CAB.

>It was the AIDS person who put the kabosh on that as well as Hemispherx never

>paying the bill for the Hotel as promised. Don't place blame where it isn't

>warranted.

>

>

>

> from Ampligen could have served some purpose..........I just can't see that

>hating or threatening the people that do take the drug and do better serves

>any productive purpose.........in fact seems

> quite insane to me.......even with brainfog. Also seems horribly unethical

>to me Gail for you to be using privileged information given to you to be a

>part of the CAB formation (which you then quit

> after taking this privileged information) to write anti-Ampligen stories

>for your publication. Talk about a violation of trust.

>

>This information did NOT come from the CAB nor was I at any meeting of for

>the formation. The information came from a patient who was helping gather

>these facts for the FDA. There was no violation of trust. The violation

>would have only come if I divulged names that were asked of me when I had no

>permission to do so.

>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.