Re: ampligen

[Guest guest]

Hi Mark,

It is in Fountain Valley, CA. It was emailed to me from the CFS

support group leader in Long Beach, CA,.

Al

> Where is Fountian Valley Hospital ?

>

> How did you here about the trial ?

>

> Ampligen

>

>

> >

> > Members

> >

> > I recently found out that Fountain Valley Hospital is doing a

study on

> > CFS patients using Ampligen.

> >

> > It is cost free and have favorable results in prior testings.

> >

> > If interested, contact at 714-751-5800 x-35. I would

appreciate

> > feedback, if anybody pursues this study.

> >

> > See you at the next meeting.

> >

> > Larry Ridenour

> > CFS/FM Support Group

> > Long Beach, Ca

> > http://community.webtv.net/cfsfmlobeca/WELCOME

> >

>

>

>

> 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]

Where is Fountian Valley Hospital ?

How did you here about the trial ?

Ampligen

>

> Members

>

> I recently found out that Fountain Valley Hospital is doing a study on

> CFS patients using Ampligen.

>

> It is cost free and have favorable results in prior testings.

>

> If interested, contact at 714-751-5800 x-35. I would appreciate

> feedback, if anybody pursues this study.

>

> See you at the next meeting.

>

> Larry Ridenour

> CFS/FM Support Group

> Long Beach, Ca

> http://community.webtv.net/cfsfmlobeca/WELCOME

>

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]

Dear Al Mellilo,

What do you think about Ampligen? Do you think this eventually can provide

a cure for CFS patients?

Best wishes,

s

[Guest guest]

Hi .

Please feel free to tell us all you know about ampligen. How do we

get information about the new trials? Do you know of anyone who has

improved on ampligen? I don't think anyone on the list is against

talking about it. I would love to hear some good news about ampligen.

Tom

[Guest guest]

> With a new study beginining in utah and other places; why is thier no

> discussion on ampligen on this list.

Because the moderator of this list, Ken Lassessen, asked members not

to discuss ampligen on this list. He set up a separate list

specifically to discuss ampligen. To check the ampligen list out, go

to groups home page and type in the word ampligen in the search

box.

[Guest guest]

Beck..me too..groping in the dark..

[Guest guest]

With all due respect to the hosts of this listserv, I believe we ought to

give Ampligen-related discussion another try, now that we have some distance

from our previous experience on the subject...

And of course if the discussion begins to dominate or get nasty we'll just

pull the plug!

Would that be alright, Moderator? 8^!

--

Hud (8 >{D)

hudr@...

[Guest guest]

Dear Peggy,

You wrote, " I understand that a lot of people consider Ampligen

" controversial, " but it seems to me that it should not be banned from

discussion on this list if people are talking about it in a medical, and not

political, way. I think the ban is ridiculous, considering that no other

treatments are banned from discussion here....

I agree.

Sue B.

upstate New York

[Guest guest]

Hello B., Ampligen is certainly a valid topic for discussion.

But, if you read Ken's message, you will see that a separate list

has been set up for it. You wouldn't believe the acrimony that the

thread caused on this list. It went on for days and people were

calling each other names and creating havoc. I would encourage

you or anyone to again take the discussion to the list that Ken

has set up. I am hopeful that it will be a good treatment for many

of us.

Mike

> Ken: I have total respect for your wishes and your lists.

<<<snip<<<<

> I find it inconceivable that the ONLY drug in Phase III trials and

> truly treats this DD is banned from discussion on any

list.<<snip<<

[Guest guest]

> Clay: In response to your post.....I am currently on Ampligen and

> have been for about 15 months. Ampligen works for me and has for

> many

> others at our site...Incline Village (Dr. ). It has had a

> tremendous success rate. My hope is that it is approved by the FDA,

> once all the data is in, and it be made available to all. For many

of

> us it has been a total miracle. It was, indeed, a shock to me, as

I

> didn't expect such dramatic improvement. I went into this just

> hoping

> for whatever improvement I could get......it's been much more than

> expected.

>

Thanks for your reply, it is so encouraging to hear stories like

yours. Did you have the severe brainfog?? Or cognitive impairment?

Were you on the second trials? or did you get on Ampligen and do you

have to pay for it at the moment?? I have thoughts of goin to

Canada, because they say it may be another year and a half before FDA

may approve it in the US. It sounds promising, but along time to

wait:( Did you also have upregulated RnaseL activity and what was

it if you remember and did it bring it down? Sorry for all the

questions, just want to know alot about the drug and have never

talked to anyone that is on it. Its so nice to have you here...

Thanks Again,

Clay

PS: May I email you?

[Guest guest]

Hi ,

Could you please email me your email address, if that is alright

with you... I would like to duscuss some issues on Ampligen and so

forth. Thanks so much for your time.

Clay

cbeck32@...

> Clay: In response to your post.....I am currently on Ampligen and

> have been for about 15 months. Ampligen works for me and has for

> many

> others at our site...Incline Village (Dr. ). It has had a

> tremendous success rate. My hope is that it is approved by the FDA,

> once all the data is in, and it be made available to all. For many

of

> us it has been a total miracle. It was, indeed, a shock to me, as

I

> didn't expect such dramatic improvement. I went into this just

> hoping

> for whatever improvement I could get......it's been much more than

> expected.

>

[Guest guest]

hi,

as an old timer with this illness and on and off this list for awhile plus

having been around for some of the earlier patient trials in the mid /late

1990s( soley fianced by the patients ) and aware of the even earlier trails

in the 1980s by a few early cfids mds ( stoppped due to liver promblems if i

rmember correctly)

ampligen has been a miracle for some cfids patinets and a total

diasaster for others leaving them worse off than before , with immense

intractable pain..The orginal patient who had it is still very sick depsite

the companys public realtions effort to contiune to say they are well.

dr demeilier has a conflcit of interest with treating and beinc

fiancially connected to the company that makes apmligen.

hemispherx which makes the ampligen has charged patients thousands of

dollars to particpate in drug studies for the fda required testing phases ,,

when usually a drug company solicits patients and provides the drug to be

tested in the phase 1 , phase 2 etc fda trails free of charge as well as the

lab tests needed are free versus hemispherx charged patients for the ampligen

and testing was self pay..

furthermore, patients were promised in some of the trails by hemispherx that

for part of the time they would be on ampligen and the rest of the time on

placebo but the company didnt honor what they promised the patients ... Some

of the spokes people for how wonderful ampligen is have relarives who work

for the company and if they did as they were told kept receiving the

ampligen..The company has had major finaccial promblmes and on dr cheneys oct

2002 tape he mentioned something to the effet that 2003 would be a deciding

year wheather hemispherx would survive financially. The aids community has

been offereed it also .

in the past one month, i have had four friends who are well ;non cifds call

me aobut a miracle cfids drug to cure me called ampligen that has appeared on

the nitely news without any balance in reproting of the negative promblems

with some patients and the finanical promblems the company has had.

my two cents. somish.

[Guest guest]

May I suggest, if nobody has done so yet, that we do stick to personal

experiences re: Ampligen (as interesting as the politics are) just so that we

can keep it a viable topic on this list and not have it be banned as a topic

again? I am always interested to hear personal stories, positive or

negative, about Ampligen, and want them to be allowed on this list.

Peggy

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome:

http://www.angelfire.com/ri/strickenbk

[Guest guest]

I thought Apligen was off the market for some time now..

ampligen

Have we discussed Ampligen here yet?

if so, just point me to the old postings ..

doris

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Doris,

I don't recall ampligen postings here but a good place to read about it is

the book Osler's Web by .

mary n

[Guest guest]

nne,

I just know that Ampligen has questionnable efficacy from what I've read. I

once asked Dr. G. if he thought that my brother, who has CFIDS, should go up

to Canada to try it, and he said no. The historical controversy is discussed

in an excellent book, Osler's Web: Untangling the ______ of Chronic Fatigue

Syndrome by .

mary

[Guest guest]

cindy

i would definitely post this question over at the Ampligen

group:

CFS-Ampligen/

there are many people over there that have reported a big benefit

from Ampligen. It's really hard to say at this point for sure.

have you thought about trying to get the Low Molecular Weight RnaseL

test done in Belgium. Some say that if you test positive on this test

you are more likely to benefit from Ampligen.

here is the web site for the lab:

http://www.redlabs.com/en/index.html

they have info on how to send a sample etc...on the site, but you'll

need a DR to order the test for you.

also, are you sure that you would have to travel to Chicago to get in

the trial? i think there is a DR in NJ who is also working with

Ampligen.

Dr Podell (i know absolutely nothing about this DR, maybe

someone else here has seen him)

http://www.drpodell.org/

thanks

bill

PS - definitely post this question over at the Ampligen group.

[Guest guest]

To repeat what winsomme offered

Click on " Home " on the left-hand side of the page for this group

There you will see a link " CFS-Ampligen " for another group

In brief, afaik, the presence of of a low protein 37 kDn - normally 80

kDn in normal controls - was thought to be a clinical marker for

potential benefit from Ampligen. In recent months, who actually

benefits from Ampligen vs those that don't has become even less clear

- and was unclear from the start. The other posters on " CFS-Ampligen "

know way more technically than I do about it

When the trials are completed, may be more info will be had. One of

the goals, I would think, is to be able to determine good potential

candidates - PWCs that would respond well to Ampligen. But realize

that even well-established drugs don't help everyone with other diseases

There is a the Podell CFS center in NJ, IIRC, and there used to be a

Dr. King administering the Amp program (she is either with Dr. Podell

or is at another NJ location - I can't remember)

I believe Ampligen will work for a subset of us

Some of us are extremely ill w/this DD - hospitalized, bedridden,

housebound, in wheelchairs, etc. Like many diseases, it can be mild to

severe. Even in moderate form, dis-ease/discomfort level can be very

high - hang in there

Lance

> I was wondering if anyone had participated in any of the ampligen

trials or

> had otherwise had the drug administered to them. I've read some of the

> literature as to the results of this treatment and have discussed it

with a

> few of the doctors administering it and am very perplexed as to how to

> proceed especially considering what it costs and the logistics of

having to

> go to Chicago once a week for six months from New York. And

although FDA

> approval is expected in about a year, from what I've read and been

told, the

> results are very mixed. I am at the end of my rope, however, and so

would

> greatly appreciate any feedback on this.

>

> Thanks a lot.

>

>

> M. Fox, Esq.

[Guest guest]

p.s. there are other ttmt to try. is a mixed bag. search this group

and google. some PWCs get somewhat better. others get sicker trying

things, or find no improvement at all, while depleting their finances

(nominal for some of us)

Lance

[Guest guest]

Hi ,

There's a long-running listserve for Ampligen. It includes people who have

taken Ampligen--both those who have had good experiences and those who have

had bad experiences. It also includes people who just want to learn about

it. The moderator is excellent.

CFS-Ampligen

At this point, it would probably be better for you to join an Ampligen list

than to try to discuss it on this list.

Best,

Sue B.,

Upstate New York

==============

[Guest guest]

" > The upside of the patient populations experimentations

over the

> years with Teitalbaum, Goldstein and I also think its fair to

> include Ampligen as well as numerous other vanquished protocols is

> to recognize these essential failures as such. This recognition

> allows for clearer insight, understanding and a more sober focus to

> bare on current and future treatment suggestions. "

>

> Have you not seen the recent results of the Ampligen Phase III study?

> They are quite impressive.

>

>

>

>

>

>

>

[Guest guest]

http://biz./bw/040503/35403_1.html

Monday May 3, 8:02 am ET

Patients Receiving Ampligen Improve at Twice the Level Considered

Medically Significant

TUCSON, Ariz.--(BUSINESS WIRE)--May 3, 2004-- Hemispherx Biopharma,

Inc. (AMEX: HEB - News) announced today that its pivotal Phase III

Chronic Fatigue Syndrome (CFS) trial of Ampligen met its primary

endpoint with patients receiving Ampligen for 40 weeks. A

statistically significant increase (p=0.022) in patients' physical

performance as measured by Treadmill Exercise Tolerance Testing (ETT)

was found, compared to placebo. Ampligen represents one of a new

class of drugs called dsRNA drugs for the potential treatment of CFS

that afflict more than 500,000 people in the United States. Following

peer review, the Ampligen study will be presented today at the 17th

International Conference on Antiviral Research, held in Tucson,

Arizona, in Oral Session II.

ADVERTISEMENT

" We are very pleased to report these new results from the pivotal CFS

trial with Ampligen. This study is particularly important because CFS

is currently only treated symptomatically as there is as yet no FDA

approved therapy, " said Dr. A. , Chief Executive

Officer of Hemispherx Biopharma. " With this data, we now focus on the

preparation of new drug applications nationally and internationally.

We expect that these results will generate significant interest from

the pharmaceutical industry. "

Study Design

The reported new clinical study is a well controlled, multi-center,

double-blind, randomized, placebo-controlled Phase III pivotal study

of the efficacy and safety of the experimental agent Ampligen, given

400 mg twice weekly, versus placebo in patients with severely

debilitating CFS. The clinical trial randomized 234 patients at 12

centers across the U.S. to assess the effects of 40 weeks of

treatment with Ampligen in patients suffering from CFS. The

prospectively defined primary endpoint was improved physical

performance as measured by Treadmill Exercise Tolerance Testing

(ETT): Duration. Efficacy may be established by showing a medically

significant increase (greater than or equal to 6.5%) in mean exercise

duration (baseline compared to week 40) that is statistically

significant (p less than or equal to 0.05) using a statistical method

termed " analysis of covariance " .

The Ampligen clinical study design was previously reviewed by a

specially convened panel of the FDA's Antiviral Advisory Committee,

and the case definition of CFS was developed and recommended by the

U.S. Center for Disease Control and Prevention (CDC).

Study Results

Patients receiving Ampligen for 40 weeks improved exercise treadmill

performance 19.4% vs. 5.1% in the placebo group (p=0.022, analysis of

covariance with baseline as covariate). An " intent to treat " analysis

included patients who completed less than 40 weeks. Similar results

were obtained with 17.7% improvement in exercise treadmill duration

in the Ampligen cohort compared to 4.3% in patients receiving the

placebo (p=0.047). Improvements in exercise treadmill duration in the

patients receiving Ampligen compared to placebo were greater than

twice the minimum considered medically significant (6.5%). Moreover,

there was no significant difference in the number of serious adverse

events, missed dosages or dropouts (i.e., leaving the study

prematurely) among patients receiving Ampligen vs. those receiving

placebo, suggesting that the experimental drug was generally well

tolerated.

[Guest guest]

honestly, i don't really know what to think about Ampligen. i guess

we will just have to wait and see.

thanks

bill