Re: Ampligen and its enemies

[Guest guest]

Hello All,

I would like to thank all the brave people that are taking Ampligen, and

other experimental drugs for ME/CFS. Thank you for giving us updates about

your experience.

Hopefully we all will benefit from your sacrifice. The people we especially

need to thank are those that go through the drug trials and have serious side

effects or receive no benefit. Unfortunately this occurs in many different

drug trails for many different diseases. This is a risk that is spelled out

to the participants before they start the study and this risk is what keeps

many people out of a study.

I feel we need to let the FDA process run its course as quickly as possible.

Gail and others that feel there is problems with the drug, pharmaceutical

company, or test site doctors, etc. do have a mechanism for reporting this to

the FDA. I understand that this has been done. They certainly have the right

to do this. It seems to me that since the FDA has been notified of problems

and has not taken any action we can feel reasonably certain that their is not

a serious safety issue with the drug.

It is hard for me to imagine that anyone is being duped into taking Ampligen.

People that are going into the study are seeking it out. In fact many people

that want to be in the study can not because:

-relativity few doctors are involved in the studies

-few patient slots are available

-geographic locations are limited

-medical criteria is strict for both studies

-$40, 000 or bucks a year for cost recovery study

People that go into FDA study have been informed that their is NO guarantee

that they will receive any benefit. They are doing it because they want to

take the risk. If it works for them then they get to be the first people that

benefit from the drug. The risk is that they will be harmed.

I have a lot of compassion for the people that take the risk of going into a

drug trial and end up with a bad outcome. It is not fair to have the bad luck

of getting a horrible disease then also the bad luck of not having the drug

help. But this is the risk they willing took.

The most important issue in the Ampligen war is the right of patients to have

access to a drug that can improve their quality of life. I feel that patients

should be allowed to make INFORMED CONSENT about a drug and take the risk it

they so desire.

I think that people like us (on CFSMExperimental@onelist) that are looking

for different methods of treatment should be allowed to do so after the drug

passes the basic safety tests. This should include pre-market experimental

drugs as well as drugs that are already on the market. What the people on

Ampligen are afraid of is there access to Ampligen will be taken away. People

like me are afraid that I will never get the chance to make the decision if

the drug is not approved.

We need more choices not fewer.

Sydney