For me, the most problematic thing about the FDA Ampligen committee meeting wasn't Ampligen's nonapproval. It was a sick ME patient leaning on a cane who showed me the prescription a neurologist had given her—after admonishing her for using a cane. Gazing at the script for several seconds, I first felt confusion and then the patient's humiliation. The prescription read:
Tai Chi
I told this story to a friend who's had ME for more than 20 years, and he said in all seriousness: At this point, I'd take that cane and bash the doctor's head with it.
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yikes. The doctor needs a prescription for eye glasses.
ReplyDeleteIllustrates the misunderstandings and lack of accurate education I guess.:)
Horrible, horrible, horrible. I wouldn't blame someone for taking a cane and bashing it over the doctor's head. No understanding at all. No compassion at all.
ReplyDeleteObviously the FDA could care less about CFS/Me sufferers!
ReplyDeleteWhen I heard the one so called Dr say no it would not be Approved in a very low voice it shows the FDA is a Complete scam!
They also said paper work issues then said one patients paper work was lost wow they nit picked the trials everything apart!
A whack to the side of the head might be in order.
ReplyDeleteOn another note, this past year Dr Spitzer has been apologizing to the gay community for a damaging paper he wrote up ten years ago. He was whacked on the side of the head with Parkinson's.
Why has Hemispherx Biopharma not provided the data necessary to gain approval? All they need to do is show the immune profile at baseline of the patients who respond. Then we can all see who should be treated with Ampligen.
ReplyDeleteAmpligen also doesn't need to cost so much, it is only a TLR 3 agonist.
Hemispherx Biopharm need to provide the drug free for a well designed trial.
As I am sitting here waiting on my vyvanse medication to kick in (knowing, it's probably going to be one of those days it's ineffective) just so I can make it off the sofa and reading this, I am suddenly filled full of rage! I am 34. I have lived with CFS since I was around 15...there are just no words to do it justice...no words. For the most part, it has ruined my life, and I am pretty hopeless that this will change.
ReplyDeleteCFS & MEers' need to stop trying to work with federal agencies as if we are dealing with nice, logical, rationale people --> They are not. This nonsense was MINDFULLY created illogical!
ReplyDelete"Insanity is diong the same thing, over and over again, and expecting different results." Einstein
Why would an Allied NATO government that has a "secret file" locked on our illnesses (for another 60 years) want to help treat us w/ a government-funded cure?
I bet the doctor got rewarded with a huge Big Pharma quarterly bonus and a cruise too.
Allied NATO Government sold-out global public health for sake of profit!
Deletetrue
Just research "who owns the FDA?" and you will understand why this insanity is our reality.
ReplyDeleteIt's time to overthrow our government.
If I weren't only 25% alive, I often wonder if I should "OCCUPY" the White House.