re: Attn: MODERATORS

[Guest guest]

Hope wrote:

1. Hot discussions re: Ampligen. It was my impression

that this topic was banned from this list a long time

ago and a separate Ampligen list set up. Is that list

still functioning?

a replies:

Yes, the Ampligen list is alive and well. Having said that it occurs to me

that a list for CFIDS that bans discussion of the only drug currently being

developed to treat CFIDS is an absurdity. I took the liberty, as I suspect

you have noticed, to mention Ampligen here from time to time. Call it an act

of civil disobedience.

What the moderators need to do is moderate attacks on human beings, not the

sharing of information and experience re Ampligen. We are fortunate to have

one patient, B, who is posting from time to time on this list, her

great experience on Ampligen. There are many, many others also doing well on

Ampligen. Personally, I want to hear from them. In particular has

always shared her experience in a kind manner. She is a valuable source of

information. Hopefully whoever moderates this list will see the sense of

what I have written.

a Carnes

[Guest guest]

Hope,

I've heard from several people who were members of the Ampligen list online.

Two of them were in the Ampligen trials and did not have favorable

experiences. They left soon afterward. Three others were interested in the

subject

but, it seems, they were not treated well when they brought up any controversial

topics or wanted to hear more from those with negative experiences. One said

she was kicked off without any explanation after questioning those who had

negative experiences. I've never been on the list, so I can't speak from my own

experience but perhaps somebody here knows the moderators on that list?

Gail

1. Hot discussions re: Ampligen. It was my impression

that this topic was banned from this list a long time

ago and a separate Ampligen list set up. Is that list

still functioning?

[Guest guest]

I would very much like the topic of Ampligen to be allowed on this list. I

would like the option of making an informed decision based upon research,

personal experiences, and medical perspectives. It's my body, and I want to

make

my own decisions about it. I think it's confusing for newcomers to have to go

searching for the Ampligen list every time the topic comes up. Every time I

hear a loud critique about the dangers of Ampligen, it always seems to be the

same few voices, usually just the same single voice, and then the topic is

silenced again.

CFIDS patients often have adverse reactions to drugs. If someone has a

first-hand adverse reaction to Ampligen, I'd like to hear about it here. But

it's

not useful for me to hear about someone's brother's cousin who took Ampligen.

I have personally ended up in the ER due to adverse reactions from both

conventional and alternative medical treatments. But at least I could make

these

choices. I can't even get Ampligen, and -- at 12 years and counting of CFIDS

-- I fear I'll never have the option because of a few people who, to me, seem

mean-spirited and paternalistic.

I'm not saying Ampligen is safe or unsafe. I'd like to decide for myself. I

don't have the income to enroll in a cost-recovery study, nor can I travel to

a study site, and the only way I will ever have access to this medication is

for it to reach approval. This isn't to say I will even take it. But I have

e-mailed with numerous CFIDS patients who have taken Ampligen, and some -- but

certainly not all -- have had their lives rescued by this drug. As a CFIDS

patient, I'm fully aware that adverse reactions can happen at any time.

Plenty of people have blind trust in medicine, but I think most CFIDS

patients are astute, well-informed, and cautious. They are certainly smart and

informed enough to make their own decisions. I find it bizarre in many ways

that

this debate continues to go on, when most of us can't get the drug anyway

BECAUSE this debate continues to go on. I am certainly in favor of finding the

truth, and supporting research in all areas; but I don't see the point of some

of

the filibustering that goes on to halt Ampligen's progress.

Peggy

[Guest guest]

--- In , " a Carnes " <pj7@c...>

Hopefully whoever moderates this list will see the sense of

> what I have written.

> a Carnes

I agree with a. I would like to see the posts on Ampligen, or

anything, be more civil. I thought 's posts were civil but

someone rrelied to his that he must be on another planet. These types

of word are inflammatory. I have mellowed a lot in the past few

months and try not to be inflammatory and I hope that others will

respect everyone with different views.

I know of some people who were severely damaged by using Ampligen,

yet I know of others who were helped greatly. I know of a woman who

spent almost a million dollars and felt fine as long as she was on it

then when she couldn't afford it anymore, her CFS returned at an even

worse level. Ampligen obviously deserves our attention. I wonder if

Dr DeMeirleir has found out which subset it helps and which it hurts?

Also if one has to continue to take it to feel better, the cost would

be prohibited for 99.9% of us. To the person who had a great

experience with Ampligen, after you got off, did your symptoms remain

low?

Bob H.