Fwd: so the CDC wants published misdiagnoses of CJD?

[Guest guest]

Dear CJD VOICE [and Tom],

Could not agree more - if it wasn't so tragic, the CDC's effort to allay

public anxiety [one of that agency's major roles] - would be laughable!!!

Schonberger needs to get out into the real world, as too do the majority of

global health authorities sitting in their ivory towers with scant regard for

those they are elected to protect.

To give some idea of the opportunity for CJD to escape diagnosis, the

following

are two paragraphs from my chapter " Infertile Women and Short-statured

Children

Invisible and Visible CJD Victims of Human Pituitary Hormone Programmes " in

the

forthcoming Encyclopedia of Reproductive Technologies:

" Unlike sporadic CJD which tends to occur in the late fifth or sixth decade of

life, human pituitary hormone-related CJD has appeared at an earlier age; the

mean age of the five Australian women contracting CJD from hPG was only 45

years when their neurologic symptoms emerged, and children treated with hGH

have died of CJD without entering their teens. Additionally, the prominent

early features of dementia and electroencephalogram abnormalities in sporadic

CJD are frequently absent from pituitary hormone-related CJD, and while

sporadic CJD frequently has a chronic clinical phase persisting over years,

hPG/hGH-related CJD has a rapidly progressive course which generally brings

death within months.

These and other subtle differences between pituitary-hormone-related CJD and

other forms of the disease may account for the belated recognition of some

cases of pituitary hormone-related CJD. To date, known examples of escaped

diagnosis include; the pneumonia-attributed death of a sixteen year old

hGH-treated girl in the United States in 1979 until a re-examination of her

medical history and brain histology in 1986 confirmed that she had contracted

CJD; a psychiatric diagnosis which persisted for two years before CJD was

recognised in an hPG-treated woman from South Australia, despite the treatment

of her neurologic problems, and hPG treatment for infertility 12 years

earlier,

taking place under the roof of the same institution; a Western Australian

hPG-treated woman was misdiagnosed to be suffering from multiple sclerosis

when

her CJD manifested in 1988 subsequent to her 1976 infertility treatment. This

woman’s diagnosis was changed to read a degenerative/demyelinating illness

before her death in 1989, and her CJD went unrecognised until 1993 when a

government investigation into deaths in human pituitary hormone recipients

recognised her CJD features and acknowledged that she had been another CJD

victim of the program; and it has been widely speculated that the CJD a

Melbourne woman living in the UK would almost certainly escaped connection to

her hPG infertility treatment had it not been for the coincidence that a

member

of the Oxford medical team had prior experience during his neurological

training with a case of hPG-related CJD back in South Australia. "

I don't need to tell you just how difficult it was to get government and

medical admission to the fact that the CJD in Australian women who had

undergone hPG treatment for infertility was iatrogenic, not sporadic. In fact

if it hadn't been for Sydney journalist extraordinaire, Cooke, that

fact might still be unacknowledged to this day!!!

For the CDC to state that CJD is rarely misdiagnosed is absolute rubbish, and

also reflects an total ignorance of medical literature where there is a

self-confessed misdiagnosis rate of 10 per cent.

Best wishes to all, truth eventually prevails, but there are times when one

wonders, Lynette.

**************************

>Read what the CDC told  reporter Sue Reinert at the  Patriot Ledger

>[Massachusetts, 15 Feb 98]:

>

>

> " 'If mistakes [in diagnosis] are that common [5-10%],  the government

>may be overlooking thousands of undiagnosed CJD cases,' she [daughter

>of CJD victim]  said.

>

>

>Scientists dispute the argument. The research cited by activists hasn't

>been published where it would be scrutinized by other scientists, said

>Schonberger of the Centers for Disease Control.  Some doctors may miss

>a case or fail to identify CJD as the cause of death, but not many,

>Schonberger said. "

>In my frank opinion, CDC does not give a damn how many cases of CJD are

>out there.  How lazy can you get, not even to do a Medline search?

>CJD is an extremely inconvenient disease that must be 'eliminated'

>because it contravenes official CDC policy in regards to blood and

>cornea infectivity.

>

>

>tom

>

>

>