Re: Re: Ampligen and politics

[Guest guest]

Since Christie has asked members not to post on politics, I was abiding by

her rules. I will continue to and completely ignore the totally false post

has put on.

The CAB stands for Citizens Advisory Committee. Those who left, as

previously posted, were a group that represented quite a few patients. But

that is not why they were chosen. They were chosen because they could be

relied upon to act in the patient's best interests whether they were on or

never intending to be on Ampligen. The following post is from Ray Colliton

in answer to 's post. Ray was one of those she referred to and is the

list-owner of CO-CURE, a list that should be on every CFS patient's computer:

From: Aglady1@...

>

> Gail:

>

> You opened the box, Gail, not I.

>

> Your group did not " ask specific questions " and " never received an answer. "

Not true. and I spent two hours on the telephone of June 14.

said

" she had someone at the door " and would call me back in a half-hour. She

never

called back.

ly, she lost me completely during the telephone conversation when she

said

that the CAB must have as one of its goals the protection of Hemispherx's

interests. Sorry, I can't buy that at all. The CAB should exist to protect

the

interests of Ampligen patients. Hemispherx can protect it's interests on it

own, outside of the CAB. To work properly a CAB has to be independent of the

drug company which sponsors it.

> June 14, 1999, Ray Colliton, on behalf of the other people whose names you

> listed in your post, faxed me a list of demands that I was supposed to

agree

> to by 3 pm the following day. Here are Ray's words, verbatim: " If you do

> not agree to these points, at 3:00 p.m. EDT tomorrow the five people who I

> represent will leave the CFIDS CAB Formation Project and work for the safe

> delivery of Ampligen to the CFIDS community in whatever way they wish to do

> so. " This was not a democratic arena. I was given demands to meet by a

> deadline, or else. This sounds more like a threat than a democratic process

> to me. How about this quote at the end of the same fax: " You may want to

> know how negotiable these points are. Unfortunately, the answer is that

> they

> are not negotiable. " I was given no opportunity to respond, only to

> acquiesce. The fax was sent only to me, not to anyone else on the

> committee.

> Where was the democracy in this action?

What it was (and I note that has only included the end of the fax here)

was our telling that we had completely lost faith in her leadership

style,

tactics and apparent motivation. It was simply a way of offering an

alternative

other than just simply walking out.

Normally, I would have considered such communications within the committee

confidential. , herself, often lectured us on this point. But since

has decided to breech it, I'm replying to her comments.

> You write, " there was also a democratic [there's that word again!] vote

> taken

> for officers, that was not abided for and you, an appointed leader of the

> CAB

> continued on, again with silence. " I wasn't appointed, Gail. I was duly

> and unanimously elected by the people who attended the May meeting,

> including

> and Sheryl and Ray.

Yes, and voted out.

> Every conference call and committee meeting was taped and carefully

> transcribed by the committee secretary. She has the spoken and written

> records of everything that was said and by whom, and of every discussion

and

> every action taken.

This is true. So what?

> Regarding divergent views within patient communities, I am not speaking of

> differences of opinion within communities, I am speaking of the venomous,

> destructive attacks on the integrity of individuals whose ideas are

different

> from the attackers', those whose views do not match theirs. This behavior

> threatens our survival as a patient community. I do have experience with

> other patient communities, and I have never seen in any other patient group

> the cannibalistic behavior demonstrated by certain very vocal members of

our

> CFS community.

Perhaps the polarization would not have taken place if the Cult of Ampligen

had

not evolved, if the Ampligen Five were not used so obviously by interests

supporting Hemispherx, and if Hemispherx had not lied to and intimidated so

many

patients in the past. (I note that Dr. told all of us in Philadelphia

in

May that he would permit the release of clincial trial medical records from

the

Charlotte site for those patients adversely affected and seeking treating with

other physicians. This should have happened within 24 hours with one phone

call. As of August [the last time I had contact with Cheryl Colley] this had

not happened.)

While it is clear to me that Ampligen is efficacious in the short term at

least

for some CFIDS patients, it remains to be determined for whom in this patient

group Ampligen is contraindicated. Dr. believes that adverse reactions

are actually merely natural disease progression. I don't buy that position

for

a minute. The long-term effects of Ampligen use also needs to be clearly

documented.

Because it is very clear that Ampligen harms some CFIDS patients, it is

imperative that this group be identified. Only the full completion and

examination of Phase III trials, along with longitudinal studies of patients

after Ampligen treatment will provides the needed answers.

The Association of Ampligen patients (led by Schweitzer) is apparently

the

alternative to a genuine CAB. It will include only past and present Ampligen

patients and exists " to speed up approval of the drug by the FDA "

(fast-tracking).

This is unacceptable and will result in a focused effort to convince the FDA

not

to permit anything less than a full and complete set of Phase III trials with

the resulting proper evaluation.

There are a couple of hundred Ampligen patients in the U.S. There are

(according to Lenny 's study) 836,000 CFS patients in the U.S. I think

the

numbers will be on the side of caution.

Ray Colliton

[Guest guest]

As a suggestion to reduce Ampligen's bandwidth on this list. I am willing to put

up one page from EACH passionate person on this list to list their view/poltiics

on this issue. You may revise it as often as you want (just email me the new

text). One page (of any length) per person.

Thus the argument / experiences may be voiced (and revised etc.) for those

who wish to be passionate...

Ken

----- Original Message -----

From: GAILRONDA@...

Since Christie has asked members not to post on politics, I was abiding by

her rules.