Experimental drug may help CDS

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In a message dated 12/28/02 4:39:24 AM Eastern Standard Time,

writes:

> The name Chronic Fatigue Syndrome is a stupid name; it's an

> insult to every ME patient. Physicians who use this word, don't

> know where they are talking about. In the first place it is not

> chronic at all, but more important is, that there don't exist a

> name for the deep and indescribable experience of exhaustion

> of an ME patient. It is an experience, which can't be explained to

> a healthy person. They will never understand how terrible and

> unbearable it is to be a " living dead " .

>

> I feel much more comfortable with the name " Chronic Disease

> Syndrome " . It's more " coming home " . Yes that's what it is:

> " Chronic Disease Syndrome " .

>

>

> The " psychiatric CFS school " always tries to convince

> everybody, that it is superfluous to perform any laboratory

> research. They say that the results always come back as normal

> and that laboratory research will intensify the somatic

> " attribution " of the patients. Of course they are afraid, that their

> hypothetical house of carts comes down.

>

> Indeed most of the time the routine tests came back as normal.

> But a physician with knowledge of the medical ME literature,

> who performs the right tests, can diagnose an ME patient with a

> security of 90-98%.

>

> That's way I'm glad with the words of Dr. Podell below, he says:

>

> " ....What we are lacking at this point is a single simple lab test

> that says you have Chronic Fatigue Syndrome and you don't. But

> what we do have is a lot of lab tests that on average, people with

> CFS are more likely to be abnormal than others.... "

>

> How is it possible that physicians don't know anything about this

> terrible disease after decades of research and with an

> overwhelming amount of proves of abnormalities in numerous

> somatic systems? How is it possible that the governments in this

> " civilized " society let us suffer so much.

>

>

>

> By the way the article below is about Ampligen. I'm very curious

> about the outcome of Phase Three trial.

>

> Ampligen appears to help return RNase-L to its normal state and

> level, at least in some patients. In a former message

> Hemispherx Biopharma said about this medicine:

>

> " ..Unlike other antivirals, the injectable RNA's direct activity

> against viruses complements a second, even more important

> mechanism: its ability to reprogram the immune system. When

> the body falls to mount a sufficient immune response to a tumor

> or virus, Ampligen initiates a biochemical chain reaction that

> activates and amplifies natural killer and cytotoxic cells.... "

>

> In a press release Hemispherx Biopharma announced:

>

> " ...By establishing full enrollment in the Phase III study, the

> company plans to conduct a statistically-based data analysis of

> the double-blind, placebo-controlled portion of the study during

> year 2003. In addition, new data from an ongoing open-label,

> Phase II study - conducted in parallel with the Phase III study at

> similar medical centers and utilizing demographically matched

> CFS patients - will be presented at the January, 2003,

> International CFS Conference in Chantilly, Virginia. This

> conference brings together world-renowned researchers on

> various aspects of CFS diagnosis and potential treatments.... "

>

>

> But about 6 weeks ago the famous ME expert Dr. Kenny De

> Meirleir wrote in a letter to Dutch ME/CFS patients, that he

> stopped researching Ampligen. I don't thinks this is a hopeful

> signal.

>

>

>

> Looking at the clock: this epistle cost me more then 5 hours. I'm

> too ill and too 'exhausted' to press all these words out of my brain.

> Why I'm doing this? Does it help anybody? Does it change

> anything?

>

I feel your frustration Jan. Yes CFS is a stupid name. ME is a stupid name

too for as many times as I've read it I can't remember what ME stands for.

CFIDS is a sucky term as well for as soon as an outsider hears " Immune

Dysfunction " their next question is " Do you have AIDS? " and so I don't like

the immune dysfunction portion either although at least it is a bit more

truthful and less misleading as CFS which has a connotation of being lazy.

If it's not bad enough the names suck then you have to deal with the causes

and lack of agreement on what causes it. I'll be honest with you though, I

don't like CDS either as I don't want to be telling folks who might otherwise

think there is nothing wrong with me that I have a " disease " and the next

thing you know they may be running from you as fast as they can. " CFS " sucks

but it seems to be as best as we can do for a title. Let's face it, most of

what sucks is having it, not the title. We're all trying to have our cake

and eat it too by having the perfect title which I don't think will ever

happen even if they do change the name in the future. Just my opinion.