Incidence of CJD

[Guest guest]

I apologize for use of the word " trivializing " , maybe " minimizing " would have

been better. The most important issue is, however, that one of the few

researchers interested in CJD believes we have a good idea of the number of

cases. I don't know firsthand, but I believe Dr. Gibbs to be a highly

respected scientist in his area of expertise since he is at NIH and head of a

section there.

We have to make authorities understand that CJD is vastly undercounted. A

more accurate count will help with research dollars as well as laws to

prevent its possible spread.

Vicki

[Guest guest]

I apologize for use of the word " trivializing " , maybe " minimizing " would have

been better. The most important issue is, however, that one of the few

researchers interested in CJD believes we have a good idea of the number of

cases. I don't know firsthand, but I believe Dr. Gibbs to be a highly

respected scientist in his area of expertise since he is at NIH and head of a

section there.

We have to make authorities understand that CJD is vastly undercounted. A

more accurate count will help with research dollars as well as laws to

prevent its possible spread.

Vicki

[Guest guest]

I agree with Vicki. CJD cases are being missed and not countd. While I like

and admire Dr. Gibbs, he is only as effective as the CDC and other government

entities will allow him to be. After all, who do you think writes his

paycheck?

Beverly G.

[Guest guest]

I agree with Vicki. CJD cases are being missed and not countd. While I like

and admire Dr. Gibbs, he is only as effective as the CDC and other government

entities will allow him to be. After all, who do you think writes his

paycheck?

Beverly G.

[Guest guest]

In a message dated 2/18/99 7:24:27 AM Eastern Standard Time, esproat@...

writes:

<<

It really saddens me to hear anyone speak of Clarence Gibbs--someone who

has spent all of his professional life doing research on CJD >>

I agree with Elaine. Dr. Gibbs has been the only CJD scientist who was

accessible to us and helped from the beginning when we were a struggling group

with 8 members. There still is no proof to discredit the " one in a million "

and wont be unless mandatory autopsies are performed on Alzheimer's and other

dementia patients. Even in New York State where cases are reported and where

there is surveillance (going back to Medical Records of patient's who are

" suspected " ) we can't seem to break the " one in a million " ................Pat

[Guest guest]

In a message dated 2/18/99 12:05:43 PM Central Standard Time, APE826@...

writes:

<

>

Good point, Pat. However, I think we need to go a step backward and also

demand mandatory continuing education of ALL medical personnel to update them

on the symptoms of CJD. Hopefully, then, autopsies will be easier to obtain.

Beverly G.

[Guest guest]

When my dad died we had no problems here in Atlanta, but in other parts of the

country it is another matter.

To quote Schoenberger: " We all take risks. " He made that statement to

trivialize the risk of transmission of CJD from patient to caregiver, from

blood products and vaccinations, and the potential for BSE-related disease in

American beef.

Do his words and the risks involved take on greater or lesser weight when made

in reference to medical professionals who handle CJD patients before and after

death? You cannot simultaneously minimize the risk for the general public and

maximize the risk to protect the medical profession. The risk is more than

" for the sake of making a point " as said--it is for finding the truth.

Don in Atlanta

LDD1222@...

If autopsies can not be guaranteed to be safe to the practitioner, and they

are made mandatory by this petition, aren't you asking for many pathologists

to be exposed to this disease?

Will it be worth it?

How many pathologists need to be exposed to a risk they don't understand for

the sake of making a point? What will you say when their wives and children

are joining CJDVoice to find out more about the disease that killed their

loved one because of a forced autopsy?

> -----Original Message-----

> From: BevAlso@...

>

> In a message dated 2/18/99 12:05:43 PM Central Standard Time,

> APE826@...

> writes:

>

> <

and wont be unless mandatory autopsies are performed on

> Alzheimer's and other

> dementia patients.>>

>

> Good point, Pat. However, I think we need to go a step backward and also

> demand mandatory continuing education of ALL medical personnel to

> update them

> on the symptoms of CJD. Hopefully, then, autopsies will be

> easier to obtain.

> Beverly G.>>

[Guest guest]

-if you are scared of doing autopies better not become a

pathologist---also if any of us are right you better not be a surgeon

either---esp a neurosurgeon---our neurosurgeon " knew " the risk he was

taking--so did her GI Doctor---you going to pick and choose which cases get

" proper treatment " ???

Think the thing " ALL " of us need is the " truth " and a cure ---how do you do

that if it is a " minor " problem???

[Guest guest]

:

I have read your email (rebuttal?) to Mel Massey (DrJolyn37). I am only an

English minor, not a major, but I believe when you use " (sic) " it is used to

quote someone else who has used a word or spelled a word incorrectly

<>

Just curious....do you think that " scared " is misspelled here?

<

>

Just how many possible victims would you recommend be tested? What criteria

should be used premortem to make the decision whether or not to autopsy?

<

>

I wasn't aware that general practitioners performed autopsies. And I have

lived in Podunk, USA as a child..... As far as I know, doctors don't perform

surgeries in morgues, do they?? Conversely, pathologists don't perform

autopsies in operating rooms, do they?

<>

Au contraire! As a matter of fact, I welcome every opportunity to learn from

you and other medical personnel and scientific researchers. I don't consider

anyone an enemy in our group (or outside our group for that matter). We are

a support group who share experiences about our loved ones -- good and bad.

Sorry if we upset you with our complaints about the medical field, but these

things happened --like it or not.

Please keep in mind that most of us in CJD Voice have seen CJD first hand and

while we aren't medically trained, we have received our degrees from the

school of hard knocks. Bitter? Perhaps. Determined to make things easier

for future families who will suffer from CJD? You bet.

Beverly G.

[Guest guest]

I don't feel that the medical community doesn't care. There is ignorance out

there ( and that isn't a bad word) and fear of the unknown. I feel for the

ones on the group that didn't get to see their loved ones after death. That

is a horrible thing to go through. We had such wonderful people helping us

all the way through this ordeal. They are out there. My mother-in-law had

breast cancer and the surgeon came in to tell us about it and he was a total

boob. There are all kinds of people in the world, and just because one has an

M.D. by their name doesn't make them a nice, caring person. The medical

community has been told in the one in a million stat too, thats what they have

to go by. Educating and more research money are big key things.

Robin

[Guest guest]

:

Your idea for a database is great; however, given the lack of expediency with

which our government operates, I seriously doubt that questionable Alzheimer's

cases (let's presume that some are actually CJD cases) could be entered into

the computer and investigated before they die. In other words, these " fast

Alzheimer's " cases would die and be buried/cremated before the government

could react as most CJD cases die within a year of the first symptoms. Factor

into this that most first symptoms are always misdiagnosed. In my father's

case, we had about 5 weeks from his first symptom before he died. During this

time, we didn't have a clue what was wrong -- just a bunch of confusing

symptoms. Alzheimer's was one possibility, but in view of many other symptoms

and the rapidity with which his symptoms progressed, Alzheimer's was ruled out

after the first couple of weeks.

I agree with you that there will always be cases that slip through the cracks

and there will also be less than perfect situations in rural areas; however,

we would certainly hope that this is the exception, not the rule. Any time an

infectious disease is involved, everything humanly possible must be done to

ensure that all precautions are taken and that includes taking extraordinary

measures if there is any doubt as to why the patient died. The first step is

education. The second step is prevention.

It will take open-minded individuals like yourself to make the difference.

Beverly G.

[Guest guest]

,

What I hope to accomplish is to have the government establish a centralized

database (statistics, surveillance) and a central facility for autopsies. I

have aligned myself with a local Alzheimer's Foundation and they are willing

to add CJD and help us.............Pat

[Guest guest]

DrJolyn37-

> -----Original Message-----

> From: DrJolyn37@...

>

> -if you are scared of doing autopies better not become a

> pathologist---

You missed the point. I am not " scared " (sic) of doing autopsies. I also am

not afraid of driving 100 mph. I would, however, be afraid if the law said

that every one had to drive 100 mph. If every Alzheimer's patient MUST be

autopsied, you are not only violating the wishes of HUGE numbers of non-CJD

victim's families, you are increasing the workload on an already

over-burdened segment of the medical community. The merging of hospitals has

inreased the workload on pathologists by about 50% in the last few years.

Do you need to test every one? No. Statistically, you just need to test some

to get an idea of how many are misdiagnosed. (Admit it.) And those some

could be done by a bevy of trained, forewarned, and properly outfitted

pathologists. If you have a country Doctor doing an autopsy on a 65 year old

woman, all by him/herself out in podunk, USA, are you really going to have

valid results?

And if that same doctor then uses his/her medical equipment to perform an

operation (after sterilizing but not killing the prion), s/he is exposing an

entire community to CJD in exchange for statistically insignificant

information.

Look, people, I'm not an idiot. I know you seem to think that everyone who

wants to be a Doctor is some sort of enemy of yours, but you are shooting

yourself in the foot to put those thoughts into action.

I can't tell you how many times I have thought about abandoning this list

rather than read another message lambasting the medical community as a

whole. I understand that I am a guest in your community, and you are free to

boot me out any time you want. I also know and understand that I have more

to learn from you than you from me. However, I have a different perspective

and have ELECTED to remain a part of this community so that I can not only

get facts and info about CJD but hear first hand the concerns of the

secondary victims of this disease.

>also if any of us are right you better not be a surgeon

> either---esp a neurosurgeon---

What does this mean? " If any of us are right? " What are you referring to? I

honestly don't understand what you are trying to convey.

>you going to pick and choose which

> cases get

> " proper treatment " ???

Yes. I will be picking and choosing which cases get proper treatment. ALL of

them will get what I consider to be proper treatment. And, I am sure, there

will be times when someone disagrees as to my judgement. In which case,

there will be a mechanism for determining who is more right.

> Think the thing " ALL " of us need is the " truth " and a cure ---how

> do you do

> that if it is a " minor " problem???

The role of government, as defined by the Constitution and the Bill of

Rights, is to protect the minority from the majority. As such, it is

probably a better thing to fight to put into place a system that benefits

all small groups, such as CJD victims, than one that only benefits one small

group. I recommend that you (we) determine a way to change the system so

that all ' " minor " problem' groups are benefitted.

Wouldn't the arguments you make about the momentum of big buisness and the

bureaucracy of big government be true of many other disorders or diseases?

Rather than following the recent trend of divisiveness, trying to pit

yourself against everyone, why don't you move toward a policy of inclusion,

expanding your priorities to see that more are benefitted by your actions.

You'll find a lot more allies out there than enemies if you decide you are

fighting for ALL disease victims who can't get satisfaction.

I'd like to tell you a little story. Please bear with me.

In India, a woman from America discovered that the potential for upward

mobility among the women of India was next to nill. She had been

administering a program to give money to these women, but decided to try

something else. She gathered a group of women together, and got each of them

to put into a 'kitty' whatever they could afford. Among these women, it

wasn't much. On the order of two dollars among twenty women.

She then asked each woman to write down what she would do if she had the

whole two dollars. This WAS a bunch of money, and many of the women came up

with some pretty good ideas. The group then voted on what the BEST use of

the groups resources was, and they decided that the woman who said she would

buy cloth and make clothes to sell should get the money. It was written as a

loan, and given to her.

She used the money, made the clothes, and turned a profit. When the women

came back for their next meeting, she made payment in full, keeping enough

to maintian her 'business.' Again, all of the women donated, and all of the

women submitted proposals, and all of the women voted on who would get the

four dollars! And on and on, until it became a movement that is spreading

throughout the world, literally, two dollars at a time.

So, when you and 19 other ' " minor " problem' diseases get together and pool

your money, you may be able to do a study on your own. It may not be CJD

that gets to do the first study, it may be something we've never even heard

of. But, eventually it will be your turn, and some progress will be made.

Any group that has the strength to file a petition has the strength to do

something like this.

And think of how many more people you will help?

Or, you could just hit reply, tell me I'm 'scared' of something, and go

about your life.

I'm GIVING UP my life to follow my calling to go into medicine, by the way.

So when I hear people say no one cares, it really bugs me. If I didn't care,

I would have left a long time ago, friend.

So there.

[Guest guest]

Bev-

I think a more appropriate word would have been " afraid. " No, I don't think

" scared " is spelled wrong, unless Mel meant " sacred, " which I doubt, since

it would not have been appropriate in that sentence.

You should petition to establish a database, into which all Alzheimer's

cases are entered, and 10% of those will be autopsied. If a physician finds

the rate of progress suspicious, that would be noted and taken into

consideration. If the patient falls outside of normal ranges for age or

other relevant factors, that would be noted. If a certain community shows a

high percentage of misdiagnosing, that practitioner or system will be

retrained or reworked. Like in Oregon, funds would be distributed according

to the maximum benefit for the community as a whole. If developing an

education program would benefit a million people but developing a vaccine

would benefit everyone, you develop the vaccine.

In Podunk, USA I wouldn't be surprised if the Dog Catcher stands by watching

the autopsies. Didn't 6 people catch HIV from a dentist who didn't even

sterilize his tools in Australia? And you want to know if the same equipment

will be used? Yes, it will. As long as consumers are protesting high

premiums for their health care, corners will be cut. If you talk about

mandating that all Alzheimer's cases be autopsied, you'll see rural

Alzheimer's plunge so the Doctors don't have to do the autopsy, or even deal

with it.

" Sure, she HAD Alzheimer's, but it was the cold sore that killed her. "

I heard on the radio today that Salk's first batch of polio vaccine was

tainted with a virus that may cause tumors.

I guess Salk didn't care about people, either.

[Guest guest]

, your a man of courage. I admire your honesty & will. I still don't

think highly of doctors (only because of past experiences with my mother) My

grandfather is 84 yrs. old. (my deceased mother's father) He's a vibrant,

energetic & healthy man.

He's had the same doctor for several years. I thought that since he's lived a

long life & had a good doctor we could try out his doctor (to look at my

mother). She said that she did not know what my mom had & could not helpe

her. We of course were all saddened & discouraged by this. We expected a

miracle. There are good doctors out there but I guess when we need them to

save a life (and they don't)

they become bad. I just wanted to wish you the best & Good Luck to you!

e

[Guest guest]

OH YES! Letting medical students AND doctors know about CJD through

continuing education would be great. Maybe a few more CJD cases would have

more immediate diagnoses.

Shar

[Guest guest]

- " out in the sticks " as you put it ---you use disposable equipment where

you can and you never mix surgical and necropsy equipment- you dont throw away

your ethics -- and you always remember the first rule of medicine is " do no

harm " ---the doctor on my name is earned and after 20 years in practice -i can

spot people who dont give a damn about other's pain---and believe me there

are plenty out there- -so go change it --