Call for patient interviews

[Guest guest]

Call for patient interviews

Call for Patient Interviews

We are currently in the process of writing a book about patients with Lyme

disease. The book will concentrate on a range of patient experiences, and

the target audience will be the general public as well as Lyme patients and

their family/friends. The publication may also be suitable for professionals

who want to know more about the personal effects of the disease.

We would like to interview patients/family/friends who have - or continue to

have - struggled with the disease. The general areas we want to explore will

include successes, ongoing struggles and fatalities. The book will present

in-depth stories of selected patients and a few families/friends. Those who

would like to participate will be privately interviewed and may choose to

select pseudonyms when their stories are published to protect privacy.

Doctors will also remain unnamed unless they wish otherwise. All

individuals interviewed and written up will sign documents to assure

appropriate handling of their wishes.

We would like this book to help patients and close associates realize they

are not alone in their struggles and to understand that there is hope

(success stories). In addition, our aspirations are that the healthy would

garner a better appreciation and understanding of the patients' personal

illness experiences and viewpoints which would include coping mechanisms,

hopes, longings, sense of loss, etc.

Authors

Trish Yerges lives in Oregon and has been a successful interviewer and

writer of two books, two history indexes and over 150 articles that have

appeared in newspapers and other publications. Her areas of expertise

include medicine, history, personal profiles, biographical sketches and art.

She was an advisor to a student writing group and was named Citizens Award

Writer ('00-'01) for The Valley News paper. The abbreviated story of her

daughter's struggle with Lyme disease was published in a local paper and can

be viewed at: http://www.canlyme.com/lauren.html

Rita L. Stanley, Ph.D., also lives in Oregon and has been a support group

leader for over a decade at the Good Samaritan Hospital in Portland. Her

additional experiences with Lyme disease include a successful outcome as a

patient and serving on the Director and Advisory Boards of the Lyme

Alliance, Inc., as well as early patient activism. She has published in

leading scientific journals such as The Journal of Biological Chemistry,

Journal of Neurochemistry, and Biology of Reproduction, and in Proceedings

of such groups as AAAS and American College of Ob/Gyn.

Please contact us at Ldportraits@... if you would like to be a part

of this project or have any questions. We look forward to working with you!

[Guest guest]

Hello Lymies,

I copied this call to one of our Dutch Lyme-sites. I hope that isn't

a problem for you?

On that site they already asked for stories.

For the rest you can use Nic's story. I write it down under " To

introduce us... " message 57073 on this board or message 57072.

Greetings from Holland,

Nic & Ingeborg

>

> Call for patient interviews

>

>

> Call for Patient Interviews

>

> We are currently in the process of writing a book about patients

with Lyme

> disease. The book will concentrate on a range of patient

experiences, and

> the target audience will be the general public as well as Lyme

patients and

> their family/friends. The publication may also be suitable for

professionals

> who want to know more about the personal effects of the disease.

>

> We would like to interview patients/family/friends who have - or

continue to

> have - struggled with the disease. The general areas we want to

explore will

> include successes, ongoing struggles and fatalities. The book will

present

> in-depth stories of selected patients and a few families/friends.

Those who

> would like to participate will be privately interviewed and may

choose to

> select pseudonyms when their stories are published to protect

privacy.

> Doctors will also remain unnamed unless they wish otherwise. All

> individuals interviewed and written up will sign documents to assure

> appropriate handling of their wishes.

>

> We would like this book to help patients and close associates

realize they

> are not alone in their struggles and to understand that there is

hope

> (success stories). In addition, our aspirations are that the

healthy would

> garner a better appreciation and understanding of the patients'

personal

> illness experiences and viewpoints which would include coping

mechanisms,

> hopes, longings, sense of loss, etc.

>

> Authors

>

> Trish Yerges lives in Oregon and has been a successful interviewer

and

> writer of two books, two history indexes and over 150 articles that

have

> appeared in newspapers and other publications. Her areas of

expertise

> include medicine, history, personal profiles, biographical sketches

and art.

> She was an advisor to a student writing group and was named

Citizens Award

> Writer ('00-'01) for The Valley News paper. The abbreviated story

of her

> daughter's struggle with Lyme disease was published in a local

paper and can

> be viewed at: http://www.canlyme.com/lauren.html

>

> Rita L. Stanley, Ph.D., also lives in Oregon and has been a support

group

> leader for over a decade at the Good Samaritan Hospital in

Portland. Her

> additional experiences with Lyme disease include a successful

outcome as a

> patient and serving on the Director and Advisory Boards of the Lyme

> Alliance, Inc., as well as early patient activism. She has

published in

> leading scientific journals such as The Journal of Biological

Chemistry,

> Journal of Neurochemistry, and Biology of Reproduction, and in

Proceedings

> of such groups as AAAS and American College of Ob/Gyn.

>

> Please contact us at Ldportraits@c... if you would like to be a part

> of this project or have any questions. We look forward to working

with you!

[Guest guest]

This is an email address, not a website. Send an email message to

Ldportraits@... .

=)

Robynn

Re: [ ] Call for patient interviews

In a message dated 3/11/04 3:38:07 PM, Robynn@... writes:

> Ldportraits@...

>

I would like to be a part of this but when I put in the address up came

Welcome to Comcast High-Speed Internet. I don't think this is right or am I

doing

something wrong because I have a lyme brain? Please respond. thanks Kim

Duford

[Guest guest]

Distributing this is fine!

Send your story to Ldportraits@... . In case the email address

didn't show up completely for those of you reading this on the web, the

email address is LDPortraits @ Comcast dot net - without the spaces and

convert the word dot for an actual dot. I hope that makes sense! Let me

know if you have any questions.

=)

Robynn

-Owner

Call for patient interviews

>

>

> Call for Patient Interviews

>

> We are currently in the process of writing a book about patients

with Lyme

> disease. The book will concentrate on a range of patient

experiences, and

> the target audience will be the general public as well as Lyme

patients and

> their family/friends. The publication may also be suitable for

professionals

> who want to know more about the personal effects of the disease.

>

> We would like to interview patients/family/friends who have - or

continue to

> have - struggled with the disease. The general areas we want to

explore will

> include successes, ongoing struggles and fatalities. The book will

present

> in-depth stories of selected patients and a few families/friends.

Those who

> would like to participate will be privately interviewed and may

choose to

> select pseudonyms when their stories are published to protect

privacy.

> Doctors will also remain unnamed unless they wish otherwise. All

> individuals interviewed and written up will sign documents to assure

> appropriate handling of their wishes.

>

> We would like this book to help patients and close associates

realize they

> are not alone in their struggles and to understand that there is

hope

> (success stories). In addition, our aspirations are that the

healthy would

> garner a better appreciation and understanding of the patients'

personal

> illness experiences and viewpoints which would include coping

mechanisms,

> hopes, longings, sense of loss, etc.

>

> Authors

>

> Trish Yerges lives in Oregon and has been a successful interviewer

and

> writer of two books, two history indexes and over 150 articles that

have

> appeared in newspapers and other publications. Her areas of

expertise

> include medicine, history, personal profiles, biographical sketches

and art.

> She was an advisor to a student writing group and was named

Citizens Award

> Writer ('00-'01) for The Valley News paper. The abbreviated story

of her

> daughter's struggle with Lyme disease was published in a local

paper and can

> be viewed at: http://www.canlyme.com/lauren.html

>

> Rita L. Stanley, Ph.D., also lives in Oregon and has been a support

group

> leader for over a decade at the Good Samaritan Hospital in

Portland. Her

> additional experiences with Lyme disease include a successful

outcome as a

> patient and serving on the Director and Advisory Boards of the Lyme

> Alliance, Inc., as well as early patient activism. She has

published in

> leading scientific journals such as The Journal of Biological

Chemistry,

> Journal of Neurochemistry, and Biology of Reproduction, and in

Proceedings

> of such groups as AAAS and American College of Ob/Gyn.

>

> Please contact us at Ldportraits@c... if you would like to be a part

> of this project or have any questions. We look forward to working

with you!

[Guest guest]

I have no idea where any of the proceeds will go if anywhere. You will need

to write the authors at Ldportraits@... and ask them.

My understanding of the book at this time, is that it will provide a

realistic, and personal, image of what Lyme disease does to it's victims.

It may be the kind of book that I will want to give my family members to

help them understand what I go through on a daily basis. Or it may be a

book about hope to give to other Lyme disease victims. It will hopefully

benefit all who read the book and the Lyme disease victims they know.

If you are not interested in being interviewed that is perfectly acceptable.

The authors are looking for volunteers only. There's no political agenda at

stake here, no fundraiser to help any kind of a cause, no requirement to be

IgG positive, just a possibility to see your individual story published.

For more information you'll need to contact the authors.

=)

Robynn

Re: [ ] Re: Call for patient interviews

I would like to know where all the proceeds are going. Are any of them going

to research? Excuse me for being so blunt, but there are those that benefit

from others issues and vulnerability of the desire to be heard. There are

books out on the market that have info from LD patientsand

professionals..like " A widening Circle " " My search for a diagnosis " and

more. Yes, some of these are now out-dated and I believe an updated effort

should be made,but who is really going to benefit from this? Those that are

out there fighting congress (bravo and thankyou by the way) will really make

a difference. Sorry if this has black-balled me but I needed my opinion

known.