Thanks for the memories...

[Guest guest]

Please ask to come back to the list, as I will not post anymore. Until

there is a Community Advisory Board--the CAB--which would give us both sides

of the trials and everyone learning all sides from the ampligen patients face

to face, there will never be the two factions to meet and move forward. This

makes me sad. I do not understand why an educated decision can not be made

by putting all out in the open. The good and the bad. We have shown the

world that we indeed won't support each other, so why should we ever expect a

pharmaceutical company and it's stock holders to support us? Two patients

were to speak from each trial. A pro and a con person. I, along with ,

, and others spent many hours making telephone calls to find these

people and bring the first of it's kind meeting together. was even

ready to finance it. This is all I'll say politically, as no one will ever

know the full story until each and every one has talked to every pateint that

you can trace down and hear their story of Hemispherx' checkered past. Even

the ones that did well and wanted the drug were let down by Hemispherx. It

is all in Osler's Web and yes, I verified alot of the content. In the back

are the names of PWCs and former patients of ampligen--although many used a

pseudonym for good reason. Then, if you feel up to it read Gail's site of

memorials. Talking to these patient's families has been painful and I will

not disclose their names and cirmcumstances until I have researched and

verified further with official documents.

Yes, this is the ugly side of ampligen. There is more than one side. But,

what I feel as a former ampligen patient, that wanted to tell my story, is

that none wants to listen or believe me. It is more than painful when fellow

PWCs don't believe you. This is why, I know now, that many with bad

experiences won't speak about it and don't have the energy to.

I have no energy for it now. I tried my damnedest to get well on ampligen.

Will I be punished by PWCs because I did not? I guess it is true that none

likes a loser. And, even after getting sicker, I still cheered on all that

were doing well. There is no winning the ampligen game and I can't protect

the uninformed ones. Yes, we all want to hope for the magic bullet. Can we

all afford to put all of our hopes into one area of getting well? I think

not. Thus, I will never stop researching, writing and telling the truth

because I, just like you, want to get well. I tried! I prayed every day that

I climbed into the infusion chair. This was not the answer for me. I, too

have learned a lot and could share a lot, but narrow minds I do not tolerate

well.

Thus, I will take myself to bed with my second bout of pneumonia and

meditate, rest, listen to music , feed the ducks on the lake and be strong

for surgery.

I do wish all the very best and hope your get well dreams do become a reality.

Cheryl

[Guest guest]

I believe it was Dunne who wrote the sonnet, " For whom the bell tolls. "

I can't quote it verbatim, but if my memory serves me right, its message is

that we are all " a piece of the continent, a part of the main " and that

(pardon my bastardization of Dunne's magnificent poetry) one person's death

diminishes each of us, because we are ALL a part of mankind.

I interpret " death " on different levels, physical end of life being the

ultimate one. When Cheryl or or any other member of our patient

community (or continent), leave our midst, their departures affect me as a

form of death. I am grieving our loss.

Both of these courageous advocates have used their own precious,

non-restorative energy fighting for the benefit of us all. And we HAVE

benefited from their energies. has shared the good side of Ampligen in

treating a subset of CFS patients. Cheryl has shared the bad side of it. We

need both perspectives in order to be fully informed about the risks and

benefits of this or any other medical therapy under consideration.

Ampligen is not all good, nor is it all bad. It holds tremendous promise for

some, and the potential of serious harm for others. There are patients like

and me, who have benefited from Ampligen therapy. Just as important are

the patients who not only have failed to thrive on Ampligen, but who have

become much worse as a result of their experience with the drug. Cheryl has

eloquently and painfully brought her (and their) plight to our attention.

What saddens me the most about their departure is that they haven't been

beaten down by the system, or by those on the outside who trivialize our

disease and its impact on patients, workplaces and communities, and who are

actively working to keep us from getting the recognition, treatment and

research funding we so desperately need. These two comrades have been beaten

down by their own fellows, by the rest of us. When we attack and destroy our

colleagues, we attack and destroy a piece of ourselves.

It's OK to have major differences of opinion. The friction created by our

diversity provides both energy and balance as we move ahead toward our

collective goals. It is NOT OK to viciously attack, with the intent to

silence or destroy, our fellow advocates whose views are different from our

own. Who loses in the end? We all do, individually and collectively.

Cheryl, I honor your courage, your honesty and your commitment, and I am

praying for a good outcome for you with your Chiari surgery. I share your

hope that a CAB or a CAB-like entity will be in place soon, so that all

Ampligen patients will have somewhere to turn for information, and for

recourse, and so that the design and implementation of clinical studies with

Ampligen will be the best possible. , I honor your courage, honesty and

commitment as well. You have put your own health and reputation on the line

for us. You are fighting not just for your own needs, but for the benefit of

others.

The vicious infighting that derailed the CAB process last summer took a

nearly devastating toll on my health. I still hope that we can rise above

personal animosity with a clear vision of what is best for us all as a

community, and realize the dream we all share of ensuring a safe environment

for Ampligen patients. With the formation of similar drug-specific CAB-like

entities, hopefully we can help ensure the safety of all CFS patients

enrolled in clinical studies.

[Guest guest]

well said karen your thoughts were amazing

[Guest guest]

Cheryl,

I just read your good-bye message, which was very sad and touched on just

how complex this whole issue is.

I assume without having talked to others much that many patients, please

know this, do very much believe and are even not at all put off with the

position you take. What other position could you take? What position

other that that one would I take had I had your experience.

And believe me I HAVE had your experience with several doctors approach

to healing me and because it wasn't with a BIG WELL-KNOWN DRUG, there was

no reason to report it.

I am convinced, maybe wrongly, that when you have a very

difficult-to-impossible to treat chronic illness doctors either get very

negative and try nothing or start getting heroic and careless. Even docs

who often otherwise are careful.

This isn't the same story as yours is, but it is a negative, unpleasant

truth like yours is and one that we also should put " out there " because

it's a hazard. I know because in my case it's caused my health to be far

more seriously compromised that it would have been just from having ME

alone, without the lousy and irresponsible care I rec'd from even bright

doctors.

Ego and arrogance, to sum up rather than go into detail, which would

right now undo me, was very much at the root of this. Careful attention

to the details of what I reported and just good common medical acumen

could have prevented extreme and irreversable problems, problems that

cost me so dearly and threaten me with yet more impoverishment and a

nursing home.

So, yes, there are many unnattractive tales to tell EVEN wiithout being

cyncial about the medical profession. I.e., just telling it like it

is--what people with our disease go thru, and problably people with other

diseases that have the same problems also go thru.

YEt probably if we drew up a compendium of these stories, carefully

detailed, some Showalter type would just call us a bunch of malcontents.

Don't worry about being dismissed. You did the right thing. And many

didn't dismiss it. I know I didn't.

I also wish well and am glad she and others are enjoying the

benefits from the drug that also has hurt others. A pattern that is

hardly unique in our population.

I guess if I had taken Amp and it had helped me lots and it was horribly

expensive, as it surely is, I too would want it fast-tracked approved so

I could continue getting it for sure. But I hope I'd also be very aware

that in so doing there would have to be huge and maybe impossible to work

out protections so that people would rush to take it without knowing the

huge risks that it may not help and may hurt them.

As I said in another post, t Amp , unlike some things, say, like high

dose fish oil (which has helped some by its anti-prostaglandin effect yet

hurt me badly) when it hurts it hurts more big time and sometimes , which

is very serious, hurts for long after it's stopped. And that's why even

though it does clearly help some people, which is hardly to be snuffed

at, it must if released in such a way that insurance will pay be released

with very, very careful guidelines about who shouldn't risk it and that

close and frequent monitoring by a clinician not just the patient MUST be

recorded and submitted to the FDA, and the drug stopped.

Short of that, it shouldn't be approved until the results of the drug

trials are all in, and that those results are gone over with a fine tooth

comb, in order to be absolutely sure that fudging of data, as has been

reported on this list, has not occurred, for it makes the studies utterly

invalid!!!! Not up to basic scientific methodological standards.

A most conservative approach and one that might very well anger those who

have been helped by Amp would take the road that it should not be

available at all until evaluation data is in and meets high standards.

That means that some sick people would not be experiencing the

improvement they report they are, and to deny them that when it's what we

all crave is very difficult. Yet maybe it is the better (in the long-run

and in the overall) solution.

Think of it this way. Those who are getting it and benefitting are only

those who can, even with difficulty, manage to afford it. That makes it

very undemocratic, which is not the way health care should be delivered,

evne though it so often is.

raises the fact of what her experience has contributed to learning

about Amp. From that point of view the reply is that such learning is

more valuable when emerging from a double-blinded and honestly

administered (no coaching of , e.g., reports on the Karnovsky scale,

which have been reported and are disgusting in the extreme).

Another way to look at it is this way. There are drugs available to help

not cure, but help is so desirable. But they are so new, and the kinks

still not worked out, that like a new model car or TV or whatever, I

prefer to wait till some data is in. More data than the data collected

in the studies to achieve FDA approval.

Many drug side effects only emerge AFTER they are released.

Nothing about being sick is very easy. Putting off taking potential help

does in fact risk shortening our lives by our getting sicker. Taking

them risks getting us sicker even though it risks not getting their

benefit.

But since there are so many rotten outcomes with Amp I tend to lean on

the side of withholding any fastracking until good data is available,

even though I know that the s and the s and others may suffer

from this position (if enacted), and I hardly want anyone to suffer more

from this disease no matter how I feel about them, good or bad.

Disease suffering can't be wished on anyone, except maybe Hitler and his

moral equivalents. But even for them I prefer social ostracism via harsh

imprisonment and not disease or torture of ANY kind.

Cheryl, good luck with the operation. Take care of yourself before it as

well as after it, and know that you have not been shunned for your

position, even if 's is understood.

Best,

Judith Wisdom

________________________________________________________________

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Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

Excuse me for being not being able to follow some of these statements. I am

reading all the comments about the negative effects of ampligen, but have

never had anyone define some of them. I would appreciate you bringing me up

to date on past history of these effects. Being relatively new on this list

I feel I have missed a chapter in the book and am unable to follow what

everyone is talking about. Thanks for your up-date.

Darlene

Re: Thanks for the memories...

>From: Judith F Wisdom <judithwisdom@...>

>

>Cheryl,

>

>I just read your good-bye message, which was very sad and touched on just

>how complex this whole issue is.

>

>I assume without having talked to others much that many patients, please

>know this, do very much believe and are even not at all put off with the

>position you take. What other position could you take? What position

>other that that one would I take had I had your experience.

>

>And believe me I HAVE had your experience with several doctors approach

>to healing me and because it wasn't with a BIG WELL-KNOWN DRUG, there was

>no reason to report it.

>

>I am convinced, maybe wrongly, that when you have a very

>difficult-to-impossible to treat chronic illness doctors either get very

>negative and try nothing or start getting heroic and careless. Even docs

>who often otherwise are careful.

>

>This isn't the same story as yours is, but it is a negative, unpleasant

>truth like yours is and one that we also should put " out there " because

>it's a hazard. I know because in my case it's caused my health to be far

>more seriously compromised that it would have been just from having ME

>alone, without the lousy and irresponsible care I rec'd from even bright

>doctors.

>

>Ego and arrogance, to sum up rather than go into detail, which would

>right now undo me, was very much at the root of this. Careful attention

>to the details of what I reported and just good common medical acumen

>could have prevented extreme and irreversable problems, problems that

>cost me so dearly and threaten me with yet more impoverishment and a

>nursing home.

>

>So, yes, there are many unnattractive tales to tell EVEN wiithout being

>cyncial about the medical profession. I.e., just telling it like it

>is--what people with our disease go thru, and problably people with other

>diseases that have the same problems also go thru.

>

>YEt probably if we drew up a compendium of these stories, carefully

>detailed, some Showalter type would just call us a bunch of malcontents.

>

>Don't worry about being dismissed. You did the right thing. And many

>didn't dismiss it. I know I didn't.

>

>I also wish well and am glad she and others are enjoying the

>benefits from the drug that also has hurt others. A pattern that is

>hardly unique in our population.

>

>I guess if I had taken Amp and it had helped me lots and it was horribly

>expensive, as it surely is, I too would want it fast-tracked approved so

>I could continue getting it for sure. But I hope I'd also be very aware

>that in so doing there would have to be huge and maybe impossible to work

>out protections so that people would rush to take it without knowing the

>huge risks that it may not help and may hurt them.

>

>As I said in another post, t Amp , unlike some things, say, like high

>dose fish oil (which has helped some by its anti-prostaglandin effect yet

>hurt me badly) when it hurts it hurts more big time and sometimes , which

>is very serious, hurts for long after it's stopped. And that's why even

>though it does clearly help some people, which is hardly to be snuffed

>at, it must if released in such a way that insurance will pay be released

>with very, very careful guidelines about who shouldn't risk it and that

>close and frequent monitoring by a clinician not just the patient MUST be

>recorded and submitted to the FDA, and the drug stopped.

>

>Short of that, it shouldn't be approved until the results of the drug

>trials are all in, and that those results are gone over with a fine tooth

>comb, in order to be absolutely sure that fudging of data, as has been

>reported on this list, has not occurred, for it makes the studies utterly

>invalid!!!! Not up to basic scientific methodological standards.

>

>A most conservative approach and one that might very well anger those who

>have been helped by Amp would take the road that it should not be

>available at all until evaluation data is in and meets high standards.

>That means that some sick people would not be experiencing the

>improvement they report they are, and to deny them that when it's what we

>all crave is very difficult. Yet maybe it is the better (in the long-run

>and in the overall) solution.

>

>Think of it this way. Those who are getting it and benefitting are only

>those who can, even with difficulty, manage to afford it. That makes it

>very undemocratic, which is not the way health care should be delivered,

>evne though it so often is.

>

> raises the fact of what her experience has contributed to learning

>about Amp. From that point of view the reply is that such learning is

>more valuable when emerging from a double-blinded and honestly

>administered (no coaching of , e.g., reports on the Karnovsky scale,

>which have been reported and are disgusting in the extreme).

>

>Another way to look at it is this way. There are drugs available to help

>not cure, but help is so desirable. But they are so new, and the kinks

>still not worked out, that like a new model car or TV or whatever, I

>prefer to wait till some data is in. More data than the data collected

>in the studies to achieve FDA approval.

>

>Many drug side effects only emerge AFTER they are released.

>

>Nothing about being sick is very easy. Putting off taking potential help

>does in fact risk shortening our lives by our getting sicker. Taking

>them risks getting us sicker even though it risks not getting their

>benefit.

>

>But since there are so many rotten outcomes with Amp I tend to lean on

>the side of withholding any fastracking until good data is available,

>even though I know that the s and the s and others may suffer

>from this position (if enacted), and I hardly want anyone to suffer more

>from this disease no matter how I feel about them, good or bad.

>

>Disease suffering can't be wished on anyone, except maybe Hitler and his

>moral equivalents. But even for them I prefer social ostracism via harsh

>imprisonment and not disease or torture of ANY kind.

>

>Cheryl, good luck with the operation. Take care of yourself before it as

>well as after it, and know that you have not been shunned for your

>position, even if 's is understood.

>

>Best,

>

>Judith Wisdom

>________________________________________________________________

>YOU'RE PAYING TOO MUCH FOR THE INTERNET!

>Juno now offers FREE Internet Access!

>Try it today - there's no risk! For your FREE software, visit:

>http://dl.www.juno.com/get/tagj.

>

>---------------------------

[Guest guest]

>From: " Darlene Rippon " <darlene@...>

>

>Excuse me for being not being able to follow some of these statements. I am

>reading all the comments about the negative effects of ampligen, but have

>never had anyone define some of them. I would appreciate you bringing me

up

>to date on past history of these effects. Being relatively new on this

list

>I feel I have missed a chapter in the book and am unable to follow what

>everyone is talking about. Thanks for your up-date.

>Darlene

Can you please do this back-channel as the list just recovered from this

difficulty. I am not taking sides but I was VERY overwhelmed and would

really appreciate that those who wish to discuss this can do so on Ken L's

site. Also there are several ampligen sites through onelist. The archives

are available for a play by play as well.

I don't think anyone ever wanted to BAN the physical effects from discussion

since this is what this list is about but the passion and politics was

overwhelming and many people got hurt and stressed.

Thanks in advance for the consideration. Hope I am not stepping on any

toes. Please do not lash out at me for requesting this - I am just trying to

get well. Ampligen may be my " magic bullet " but the tone of conversation

was not conducive to learning about this possible treatment.

Marty Zavala

[Guest guest]

Wow, I have received some wonderful ideas for working on memory with

Everett. I appreciate all the great contributors to this thread. I

will sift through them and put them on my website for everyone to share

(after I finish my taxes...)

t Burk

www.autismteachingtools.com

Home of " The Early Learner at Home "