Re: ampligen

[Guest guest]

In a message dated 1/11/00 1:00:13 PM Eastern Standard Time, Aglady1@...

writes:

<< 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). >>

Why bother to continue to answer these protestations and the long, long post

from ? But I will offer two points only that have already been on this

list.

1. 's knowledge of the newletter's accounts are from ONE article written

by another patient that was in a free copy she picked up at the conference

and NOT written by me, but another Ampligen patient.

2. was voted in as leader of the CAB formation and duly voted out by a

majority of patients weeks later, but would not respond nor step down.

Without a promise of the patient coming first, the CAB formation dissolved.

Neutral parties would not accept only officers that were Ampligen patients

setting up the rules. Ther is not a CAB presently. A CAB must not be made

up solely by those whom have had contact with the company. According to the

CAB sturcture, the FDA will not recognize this unless neutral parties are

welcomed.

Hope this ends it, but I have serious doubts! And I thought the presidential

campaign was full of rhetoric!!

Gail

[Guest guest]

1. 's knowledge of the newletter's accounts are from ONE article

written

by another patient that was in a free copy she picked up at the conference

and NOT written by me, but another Ampligen patient.

2. was voted in as leader of the CAB formation and duly voted out by a

majority of patients weeks later, but would not respond nor step down.

Without a promise of the patient coming first, the CAB formation dissolved.

Neutral parties would not accept only officers that were Ampligen patients

setting up the rules. Ther is not a CAB presently. A CAB must not be made

up solely by those whom have had contact with the company. According to the

CAB sturcture, the FDA will not recognize this unless neutral parties are

welcomed.

[Guest guest]

In a message dated 1/11/00 3:03:59 PM Eastern Standard Time,

mgrahn@... writes:

<< ts obvious what is happening here is that a faction of people (don't have

to name names) is out to destroy the drug Ampligen and the company that makes

it Hemispherx. The " folks " taking Ampligen

are merely trying to defend themselves from these personal attacks and

threat >>

Marcia, from one of the ones on one side, you couldn't be more in error.

Those that offerred their time, despite this illness, to forming a group that

would help to get it FDA approved and yet had no personal interest in the

drug but wanted what was doing some good to available without harming any

patient have no reason to destroy anything, either personally, monetarily, or

ethically.

Gail

[Guest guest]

>From: berry@...

>

>I thought that flaming Ampligen stuff was " outlawed " at this list?

I thought flamming was " outlawed " period - so what the heck is the Ampligen

folks

do to each other every day ????

Enough - No WAY More Than Enough Already !!

Its obvious what is happening here is that a faction of people (don't have to

name names) is out to destroy the drug Ampligen and the company that makes it

Hemispherx. The " folks " taking Ampligen

are merely trying to defend themselves from these personal attacks and threats

to have the drug that is literally giving them their lives back taken away from

them forever. You will note that none

of these people are trying to get anyone else to take Ampligen, they are just

fighting for their rights to continue to have their treatment choices and

continue the drug that is saving them. Think

of how you would all feel if someone were threatening to take away your supply

of the lifeblood that keeps you or your loved ones going.

These patients are in Ampligen studies, just that. This is all under study

right now....someday if we allow these trials to continue without further

harassment we may all benefit from Ampligen, or

somthing that evolves out of Ampligen when more is known or from something that

is learned in these very trials. That is what studies are for, to study the

drug, dosages, effects, testing,

benefits, side effects, etc. We have already learned from those first volunteers

that the drug does not work for everybody. It seems to work most effectively

for those with the RnaseL defect.

That narrows it to a subset of CFS patients. Others of us will fit in to other

subsets and need to find our answers in other areas.

We will all have to do our own thinking here and back it up with research and

not with vague inuendos, personal attacks, stories of people who talked to

people who knew someone....etc., etc. We

need hard research before making a choice to consider trying Ampligen. Which is

a moot point at this stage for most of us anyway, because of the expense of the

drug, and the logistics of the

trials. But the bottom line is we will never find a cure for what we have if we

do not allow the research to take place unhindered and refrain from attacking

already very sick patients for their

treatment choices, or their willingness to participate in drug trials.

We all want and need that same right.

Marcia

[Guest guest]

In a message dated 1/11/00 4:01:00 PM Central Standard Time,

GAILRONDA@... writes:

<< Subj: Re: Ampligen

Date: 1/11/00 4:01:00 PM Central Standard Time

From: GAILRONDA@...

Reply-to: onelist

onelist

From: GAILRONDA@...

In a message dated 1/11/00 3:03:59 PM Eastern Standard Time,

mgrahn@... writes:

<< ts obvious what is happening here is that a faction of people (don't have

to name names) is out to destroy the drug Ampligen and the company that

makes

it Hemispherx. The " folks " taking Ampligen

are merely trying to defend themselves from these personal attacks and

threat >>

Marcia, from one of the ones on one side, you couldn't be more in error.

Those that offerred their time, despite this illness, to forming a group

that

would help to get it FDA approved and yet had no personal interest in the

drug but wanted what was doing some good to available without harming any

patient have no reason to destroy anything, either personally, monetarily,

or

ethically.

Please tell us, Gail, when you decided to help get Ampligen FDA approved.

Based on your vitriolic public track record regarding Ampligen and your

condemnation of anyone who has shared a positive experience with it, I'm

having a hard time understanding why and how you now see yourself as the

Ampligen patient's Great White Hope.

[Guest guest]

, I am not Ampligen's " Great White Hope. " If demonstrated that it would

help a patient and not harm them in any way, I would advocate for it as I

would anything I feel would help. But not without proof and not without

placing the patient first. I've said my last to who feels that one who

makes sure sentences end with a period, etc. feels she knows more than a

medical advisory board. I'll leave this as my last about this as well. The

CAB formation process was begun without any patient that was on Ampligen.

All the founding members of that group wanted what was best for the patient.

Not only the patient on Ampligen, but all patients. We wanted the company to

address problems we had been approached about. We wanted all major groups to

have an opportunity to participate. Of all the groups asked the beginning,

only one opted a wait and see attitude, The CFIDS Association of America.

The others were willing to work and do their share. All the orginal founders

except one (who was, by that time, working for Hemispherx) walked out when

they felt the patients were not being represented. I was even offered a

position of power to satisfy my ego. I did not leave with the original

group. It was only after I was offered this position which I knew was wrong,

did I join them. Since it was you offering me that position and I posted to

the entire formation committee what had happened and why I was then joining

the others, all of this serves no legitimate purpose. I have been acussed of

working for Asensio, advocating another drug, having financial purposes,etc.

None of this is true. I do not have to defend myself since I have taken the

higher ground and have nothing to defend. If I felt Ampligen was the answer

to our prayers, I would want my daughter to be on it. I would want it to be

available to as many people who wanted it. And I would work toward that end.

But the science does not support this. Hopefully, it will. In reality, it

probably won't. Until that time, we don't know if the drug is actually

harming a person in the long term or not. Until that time, I certainly

wouldn't advise anyone to take it.

I spoke tonight to Dave, another nonresponder to Ampligen from California who

passed all RNaseL tests and was positive to everything they tested him for.

He was on a double blind but didn't need any code to tell him what he was

taking since he became so ill on it. Having taken plain saline in the past,

he knew that would actually help him. Yet his Karnofsky scale is reported as

having gone up. He never answered any question that would lead anyone to be

able to even rate him on the scale. Untruthfulness bothers me.

As with , I feel your posts are taking up valuable space on a list that

is out here to help people. If you can't post on other things, please don't

expect further answers from me and don't miscontrue my silence as agreement

or otherwise.

Gail

[Guest guest]

In a message dated 1/11/00 7:14:59 AM Eastern Standard Time,

judithwisdom@... writes:

<< These are things reasonable people who cannot play around with their

lives need to know. I >>

Oh, yes, this prompted my memory about 's asumption that I did not lose a

liver or a kidney. How do you know this ? I had mentioned elevated LFTs

being tripled in a previous post. Someone had inquired as to what a LFT

is......I'm sorry I did not explain fully. LFTs are Liver Function Tests

that measure how well it is working as an organ to filter the blood, as it

can also measure the blood clotting times. I am sorry to say that mine are

not normal now. This I do know first hand and this I know as a Medical

Sonographer.

Cheryl

[Guest guest]

In a message dated 1/11/00 5:01:11 PM Eastern Standard Time,

GAILRONDA@... writes:

<< Marcia, from one of the ones on one side, you couldn't be more in error.

Those that offerred their time, despite this illness, to forming a group

that

would help to get it FDA approved and yet had no personal interest in the

drug but wanted what was doing some good to available without harming any

patient have no reason to destroy anything, either personally, monetarily,

or

ethically.

Gail >>

Couldn't have said it better. I do belive that mood altering drugs may be

causing some to mis read or mis quote. Please don't take this personally, as

this is the exact name for the majority of the drugs we take to alleviate

symptoms. As Imentioned earlier, with the assistance of my wonderful

interinst, I came off of MS Contin, Neurontin, Klonnipin and Soma, which are

all mood altering drugs. They helped me tremendously after and during

ampligen but did not want to become a zombie with a destroyed liver. Blame

it on PMS, if you must attack me now.

Cheryl

[Guest guest]

,

Are you willing to tell all about Trudy Rink's experience when she was the

contact for all perspective CAB members? Please, I'm not trying to put you

on the spot...understand this. But, the sweetest person I've ever talked to,

Trudy, had to endure suicide threats, while there was infighting factions.

The threats were from both sides of the fence. They came from those who

could not afford it and from those who were sicker for the experience. Isn't

this the most important reason to get the CAB running? Patients do need a

reliable source for answers. They need the ADVERSE REACTIONS COMMITTEE with

the 800 number that was in the planning stages. We had many volunteer to man

it as an impartial person, including me. My only motive has been to see

ampligen safely fast tracked.

Cheryl

[Guest guest]

HI,

Thank you for this feedback! Christie

At 03:43 AM 1/13/00 -0000, you wrote:

>From: linda@...

>

>WOW, guess this might be a bad time to post to this

>board. I recently moved from Reno to New Orleans

>and have been out of touch until just recently.

>Finally back online and able to catch up on what's

>going on. Still unpacking.

>

>I started Ampligen in Dec 97, one of the first

>group of five at the Incline Village site. I did

>extremely well, although a slow responder. I

>was unable to continue infusions past the 18 month

>mark due to finances. I was terrified going off the

>drug since I had read so many horror stories. I am

>pleased to say that nothing awful has happened to

>me and I am still doing remarkably well. I am truly

>amazed at what I have been able to accomplish, day

>after day of unpacking, lifting, truly a tremendous

>amount of physical activity, probably the most in

>many years. After reading all the " bad press " , just

>thought that many of you would be interested to

>hear from someone who had a significant response,

>went off the drug and continues to do well.

>

>I recently privately emailed Cheryl, just to keep in

>touch and am terribly saddened for the people who

>did not have a good experience. Cheryl, my heart

>goes out to you....I think of you often and am

>still carrying around the bookmark you sent me.

>Best wishes to you in your upcoming surgery, I'll

>be thinking of you. I'm having trouble re-reading

>this post....it appears to be cut up, also the

>email address showing on my screen is incorrect,

>I tried to correct it...it is lindab@....

>It would be nice if we could all share our successes

>AND failures with one another and not have to fear

>attack, wouldn't it?

>

>

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

[Guest guest]

I wasn't around for the Ampligen debates.......what is the general concensus

about Ampligen on this list? Has it helped people?

LIsa

Re: Re: HHV6 group

>

> >Interesting; this was before my time.

> >

> >Al Melillo wrote:

> >

> >> Hi Debbie,

> >> That HHV-6 group was started by Schweitzer who runs the Sasyfras

CFS

> >> chat list also. 's on Ampligen and was kicked off this list when it

was

> >> moderated by Clements. you might remember those heated Ampligen

> >> arguments in that era of this list.

> >> Al

> Those arguments are engraved in my brain - still gives me nightmares!

> Christie

>

>

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

> Failed tests, classes skipped, forgotten locker combinations.

> Remember the good 'ol days

> 1/4053/4/_/531724/_/959914939/

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

>

> 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]

The history is in the archives...

CFS_Ampligen is a list dedicated to it only (created to more the discussion elsewhere)

My personal take:

* Works only for those with specific clinicial test results

* High Risk - long term side effects are unknown

* High Cost

-------------------------

I would consider it ONLY in the following situation:

* Hemex anticoagulation fails

* Antibiotics fail

* Anti-virials fail

* RNase-L test results indicates that I am a candidate

* I'm deteriorating despite everything (low or moderate risk) else

-----------------------------

Ken Lassesen 2 @ 2 ft PWC, 2 @ 4ft PWC2 ft PWC: http://www.folkarts.com/idef/4 ft PWC: http://corgi.folkarts.com/Fax: (520) 832-6836 ICQ #: 2122097 (also Netmeeting with Video)

Re: Re: ampligen

I wasn't around for the Ampligen debates.......what is the general concensusabout Ampligen on this list? Has it helped people?LIsa

[Guest guest]

I agree with Ken. Our list member, Gail Kansky, president of the National CFIDS Foundation has more the Ampligen dangers on her web site at www.ncf-net.org under newsletter I believe.

Al

Re: Re: ampligen

I wasn't around for the Ampligen debates.......what is the general concensusabout Ampligen on this list? Has it helped people?LIsa

I want to find: govt. job listings govt. auction listings email for govt. officials govt. agency web sites

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]

Hi ,

For some info an Ampligen, go to the National CFIDS foundation website,

www.ncf-net.org and select Newsletter from the list and check all past

issues, there some articles on Ampligen indicating where it's going.

Al

Ampligen

> I was reading some of Burns Osler's Web excerpts from Hillary

's

> book. Amazing the complex and horrific web that has been woven about this

> drug with the CDC and all. The politics, etc. I still haven't read enough

to

> know the full story.

>

> Anyway, the reason I am writing is to ask this - Does anyone out there

> understand where Ampligen is currently in the scheme of things? I know

there

> is testing going on in different parts of the US. I also know a little

about

> the Sensio-Hemespherx battles. I'm just curious where it's going. What are

> the possible outcomes of the current step and then what is the next step?

>

> Please no Ampligen fights, just some solid info would be great, and I'm

sure

> other members of the list would be interested.

>

>

>

[Guest guest]

Steve,

Not true. Length of illness is not the most important crietria in

determining Ampligen efficacy. It's the RNase L defect. Some feel the too

criteria go hand-in-hand, but not necessarily.

There have been some good responders from those being sick 10+ years.

Jim

[Guest guest]

Ditto what Ken said about Ampligen and anyone considering this treatment

should check out asensio.com web site. Asensio is a wall street firm that

has done some research on hemispherix biopharma (or whatever they call

themselves these days). Apparently, the people behind Ampligen have been

involved in stock fraud before. In addition, they have been doing trials

with dozens of physicians all over the country with this drug for years but

never seem to be able to get thru FDA hoops. Dr. Jay Goldstein told me he

wouldn't take Ampligen if he were dying. Cheney thinks it's beneficial

early in the illness. I think the whole drug/manufacturer is a big stock

scam. I believe they've continued to fund trial after trial for years to

keep their stock price propped up, enabling insiders at the company to make

money primarily through stock sales to the public. Last time I looked they

had a $300 million market cap with no sales other than that which they

charged some trial patients and little in the way of assets. Steve B.

Ampligen

>

> As a further FYI: the effectiveness appears to require that the person has

a significant RNase-L problem (which can (and should) be confirmed by lab

tests at R.E.D.D. before starting ampligen)

>

> M Lassesen, M.S.

> ex " Dr.Gui (MSDN) " , " Dr. VB "

> cv: http://www.folkarts.com/kenl/ KenL@...

> Phone: 360 297.4717 Cell: 360 509.8970 Fax 520 832.6836

> ----- Original Message -----

> From: R. Bullock

>

> My Groups | Main Page

>

>

> Ampligen is really only effective (if you believe the limited and

possibly

> biased research claims) in the earlier stages of CFS. If you've had CFS

10+

> years it's highly unlikely you would benefit and you could put your

health

> in more danger by taking it. Some terrible side affects have been

reported.

> Steve B.

>

>

>

>

>

[Guest guest]

Jim,

Your right. Some people are still in Cheney's Stage 1 after 10 years. To

the best of my knowledge (I have considered joining one of the many ampligen

studies in the past), they don't test patients for RNase.. beforehand, but I

could be mistaken. Steve B.

Re: Ampligen

>

> Steve,

>

> Not true. Length of illness is not the most important crietria in

> determining Ampligen efficacy. It's the RNase L defect. Some feel the

too

> criteria go hand-in-hand, but not necessarily.

>

> There have been some good responders from those being sick 10+ years.

>

> Jim

>

> 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]

Steve,

They do test for RNase L, but they do not use it to admit or reject test

subjects in the 516 trial. They are still trying to make a correlation.

As for Asensio, don't believe much from them. On Wall Street they are known

as villains. They've been sued many times. They try to massage data (e.g.

the prevalence of CFS) to make money from their recommended short sales.

That to me is unethical and often illegal. That said, Hemispherix was

negligent in making public claims about the effectiveness and safety

prematurely.

It has been frustrating that the Ampligen trials are taking so long, but lack

of cash has been one major obstacle. Going public has allowed them to go

ahead w/ trials. Hopefully in early 2002 they will be able to process all

the data and send it to the FDA.

Jim

[Guest guest]

> Cheney thinks [Ampligen is] beneficial

> early in the illness.

Steve

No offense, but have you discussed Ampligen with Cheney at length?

I have. (Several years back, after I had tested positive for the

defective RNase-L enzyme, Cheney and I discussed Ampligen at

length.) To make a long story short, Cheney told me then that

Ampligen was a good drug. He apparently still believes it is,

because just this past April he told me that Ampligen is his first

choice for treating Phase I patients.

I do agree with Ken, though, that anyone considering Ampligen

should confirm that their RNase-L is a significant problem. I

believe Cheney would agree with this, too.

Best,

Sheri

[Guest guest]

I agree with you Steve. i was planning to enter the trial as well but was

excluded (thank God) because my thyroid coud not stabilize. My health care

practitioner said it was a blessing I did not get involved. many are getting

very sick....I've decided Ampligen is an expensive, useless and dangerous

waste of time..barbara

[Guest guest]

Sheri,

Cheney told me exactly what he told you. Another top CFS physician told me

it was potentilly very dangerous. I considered entering trials performed 3

times over about a 2 year period in S. California. I went to the early

seminars on the drug and filled out the paper work to enter but finally

decided against it when they required I discontinue some of the medications

I was currently taking and getting benefit from. Anyway, they created

another e-group to discuss this subject and we're not supposed to discuss it

on this e-group. This issue is like the abortion issue, people are either

fervantly in favor or fervantly against it. Steve Bullock

Re: Ampligen

>

>

> > Cheney thinks [Ampligen is] beneficial

> > early in the illness.

>

> Steve

> No offense, but have you discussed Ampligen with Cheney at length?

> I have. (Several years back, after I had tested positive for the

> defective RNase-L enzyme, Cheney and I discussed Ampligen at

> length.) To make a long story short, Cheney told me then that

> Ampligen was a good drug. He apparently still believes it is,

> because just this past April he told me that Ampligen is his first

> choice for treating Phase I patients.

> I do agree with Ken, though, that anyone considering Ampligen

> should confirm that their RNase-L is a significant problem. I

> believe Cheney would agree with this, too.

>

> Best,

> Sheri

>

>

> 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]

Barbara,

I agree but we're not allowed to discuss " A " in this e-group. Steve Bullock

Re: Re: Ampligen

>

> I agree with you Steve. i was planning to enter the trial as well but was

> excluded (thank God) because my thyroid coud not stabilize. My health

care

> practitioner said it was a blessing I did not get involved. many are

getting

> very sick....I've decided Ampligen is an expensive, useless and dangerous

> waste of time..barbara

>

> 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]

Try lowering the dose.

[Guest guest]

Hi Ellen,

There is some info on Ampligen at www.ncf-net.org under the

newsletter or conference section. Gail Kansky of the NCF reported that many

patients are worse since trying Ampligen.

Al

Ampligen

> Can someone give me information about Ampligen, my best friend is on a

> 24 week treatment (just ended 9th week) and is having very severe side

> effects, her doctor said they can last for 3 months.

>

>

[Guest guest]

s, very good question. However, Ampligen discussions got

so heated (nasty) on this list, pro vs. con, that the moderators

decided to 86 (not allow) the discussion of Ampligen *on this list*.

I believe there was a special list set up for Ampligen discussion.

Would someone would be so kind as to backchannel s with the

location of the 'A' list?

Mike

>

> Are there any news about Ampligen research? I think it has been

tested in

> patients, and some very serious researchers have been associated

with the

> Ampligen trials. Are there any news about this?

>

> Yours,

> s