Setting the record straight (yet again)

[Guest guest]

First, let me concur with Lang's excellent post about the problem

with getting Gail and the National CFIDS Forum to simply accept a dialog

on the information they have printed as " facts, " which many of us have

presented evidence showing are not " facts " at all -- and in far too many

cases, the " facts " pertain to named individuals who are not given the

opportunity to defend themselves.

Perhaps Ken could use his new website as a place where we could list the

statements that have been made about Ampligen in the National CFIDS

Forum -- or other published sources -- and offer a place to respond to

these statements publicly, but in a professional manner (since Ken will

edit it). I think this could be enormously useful -- we could cut down

on a lot of the confusion and circular discussions.

One last time I will attempt to speak to Cheryl. Cheryl, we were

friends for a very long time, and I did my best to help you when you

needed help. I have expressed sorrow many times at what has happened to

you, and I have incorporated the stories of your experience into my own

accounts of how Ampligen affects people. I have not denied anything you

say happened to you. In fact, I remember going through some of it with

you, and wondering what to do next. I have friends who have been helped

by the Chiari surgery; I also know some who, sadly, were not (or at

least, not yet -- I am told it can take six months). It is not easy

surgery to go through. I wish you only that the surgery works, and that

you get better. That is all I wish for anybody with this dreadful

condition. I hope you get better, any way you find to get better.

Members of this list should know that I also run a list called AmpInfo,

which is limited only to patients who know they are on Ampligen, or were

on Ampligen, or in one case, to the mother of two former Ampligen

patients. The list has 29 people, mostly from the U.S. Amp511 cost

recovery study, but also from Canada and Belgium. No one from the Amp

516 double-blind, or Phase III, study is permitted to join because they

are not permitted to speculate about symptoms with us -- indeed, we

don't think it would be very good for their sanity to be reading what we

write and always comparing it to themselves, wondering if they were on

the drug or not.

Cheryl was a member from the beginning; in fact, one of the reasons I

started the list was that I hoped that and others from the first

round of the 511 (which started in the summer of 1997, except for

Incline Village, which began in December 1997), could help the rest of

us. And indeed they did.

After Cheryl went off Ampligen, after she began speaking publicly about

not doing well, she continued to remain on AmpInfo, as a welcome

participant. It doesn't do anyone any good to hide anything -- the

purpose of the list was to share as much information as we had, since

there are so few of us on the drug.

However, members of the list were alarmed by the public statement about

suicides and deaths (which conflicts dramatically with what we know --

there HAVE been suicides, as in the CFS/M.E. community as a whole, but

not to the extent that was implied; and to my knowledge there have NOT

been an equal number of deaths among former Ampligen participants,

although they may be getting on in age -- I know there aren't that

number of deaths in total among present Ampligen participants).

We do not know what is going on inside you right now, Cheryl. But the

AmpInfo list, as you know, is intensely private. Patients won't speak

about their lives if they have to fear that some casual statement will

end up taken out of context, printed in the National CFIDS Forum and

used against Ampligen patients themselves. We asked you to respond with

evidence about the statement you made on , and you

declined. In fact, you have continued to decline to provide evidence,

choosing instead to mount a personal attack on me.

The AmpInfo group decided, reluctantly, to ask Cheryl to remove herself

until we could be assured she would not spread unverified and

unverifiable rumors and innuendo about us. I seldom make these

decisions in a discussion group by myself; I believe in asking for the

sense of the group.

However, no mention of this incident has been made to the larger

discussion/support list that I run, of which Cheryl is still a member

(to my knowledge), " Sasyfras. " Sasyfras has roughly 400 members, and

Cheryl has been with us since nearly the beginning. She posts there

about her experiences, and no one has ever asked her not to. No one has

ever denied her own account of her own experiences.

On Sasyfras, however, it is against the rules to cavalierly throw out

" facts " that can harm other CFS/M.E. patients. If you do so, you will

be asked to verify them. If you cannot verify them, you will be asked

to retract them and apologize to the group. In the meantime, you will

be set to " review " , where you can still post, but an administrator

(usually Phyllis) reviews what you write to make sure it is neither

inflammatory nor a continuation of the unsupported inaccuracies. It is

okay to engage in a debate with other members; it is okay to disagree

with other members (as long as it doesn't get down and dirty and

personal). But it is not okay to spread innuendos and rumors that can

hurt other patients.

If a member responds by attacking other subscribers for asking for the

evidence to back up his/her statements; if a member refuses to accept

review status while the issue is being settled; then the member is asked

to leave. Then and only then. A member can always come back if they

will apologize for what happened and not start the whole thing up again.

The reason for these rules is that patients were getting upset about the

type of anger and flame wars we just experienced on this list. We

created an administrative group out of volunteers, and they decide what

to do about a situation. We often ask for input from the group as a

whole. The support function of Sasyfras is as important as the

information function, and we do not want to destroy the fabric of trust

that enables that support. Sasyfras is named after a PWC, Joan Irvine,

who took her life because she felt there was no hope -- no windows, no

doors -- and it is dedicated to preventing that happening ever again

online.

This incident occurred on , NOT on Sasyfras. To

repeat, Cheryl is still a member in good standing on Sasyfras (to my

knowledge), and can post at will. She is not set to review.

In BOTH cases -- AmpInfo and Sasyfras -- we try to operate by the rules

of a support group such as one might find at a local clinic or

hospital. Destructive behavior is not permitted in a face-to-face

support group. If a member cannot abide by the rules, they are asked to

leave. This is all much easier when you ARE face to face -- I am quite

certain much of what has been said on this list in anger would never

have been said had we been in the same room -- but we need to find ways

to keep internet support groups safe, too. Safe from the harm that is

caused to patients from the stress of endless, unresolvable

argumentation; slander; sensationalist innuendo and rumor.

I guess this went on longer than I planned. I'm going to back off

internet for a while, just a bit sad here. But I wanted everyone to

know that Cheryl was asked to leave AmpInfo only after the group as a

whole agreed to it; and that she has NOT been asked to leave the larger,

more encompassing CFS/M.E. support group that I run, Sasyfras.

(Information about Sasyfras can be found at:

http://www.cfids-me.org/sasyfras.html

The site also contains the rules that by which we try to operate on the

list, so that it can continue to offer effective support for PWC's.

Schweitzer

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