Protocol and Information Announcement

[Guest guest]

Yes I think the word " protocol " is not quite acurate and has been

heuristcally used to refer to what Dr. G is doing.

Ray

At 03:03 PM 12/20/01 -0600, you wrote:

---------------------------------------------

>Mark wrote:

>

>> PHYSICIAN Protocol and Training Documents are also nearing

>> completition.

---------------------------------------------

>lovemykiddo wrote:

>I believe this document would be what *I* am referring to

>when I use/hear the term " protocol. "

>

>The term " protocol " in a medical sense is a document that

>describes how one becomes eligible for participation in

>a particular treatment methodology, describes that methodology

>in detail, describes how one becomes inelible for continued

>participation, and describes the medical goals for treatment

>in (mostly) quantifiable terms...among other things. As Marc

>mentioned, it is not the kind of document posted on a physician's

>website for patient-information purposes, although these

>documents can make their way to patients, through their

>physicians, whose responsibility it is to help them understand

>any terminology or concepts that are not normally part of

>a layperson's knowledge. They might also become, as

>alluded to, part of an informed consent (ie: when one

>participates in a medical study.)

>

>It appears that reference to the term " protocol " with respect to

>the organization has, thus far, been much more of a

>philosophical and informational document than a method of

>communication of medical information amongst physicians.

>I think those of us who have either medical or scientific

>backgrounds might have had a particular construct about

>the term " protocol " that doesn't include something that Mark

>referred to as a " parents protocol " .....and his post seems to

>clarify that we may be talking about two different items

>here when using the term " protocol " ...the medical documents

>that I'm more familiar with that appear to be forthcoming, and

>the more " patient-friendly " information provided

>primarily for parents, on Dr. Goldberg's website. I believe

>the " Physician Protocol " that Mark refers to in the part of his

>post that I highlighted above, is the document that some of us are

>inquiring about, and that our children's physicians are looking for

>to answer their questions.

>

>Perhaps this has been a semantics problem all along?

>

>

>

>

>

>

>

>

>Responsibility for the content of this message lies strictly with

>the original author, and is not necessarily endorsed by or the

>opinion of the Research Institute.

>

>

>

[Guest guest]

Dear List Members,

First let me apologize for the length of this post but hopefully, the

information presented will help refocus this list back to its original

intent. Please read through the entire post as it contains important

information.

I am sorry for not posting this information sooner. The Board felt

the time was better served toward completing the documents described

below instead of writing about them yet, recent exchanges on this

list have proved quite disconcerting so I will briefly refocus my

energy to provide an update to all of you.

First of all, I would like to thank all the members and moderators

who have tried to bring the lists posts back under control. It is

often quite difficult to feel attacked and keep a straight head and

respond to the assault. Your energy and input is greatly appreciated.

Now for the update:

A Parents protocol will be available for parents of children who are

patients of practitioners. While there will never be a specific

protocol posted on the web-site (due to the individualized nature for

each patient) there will be general information more readily

available. In fact, as has been mentioned on many occasions, the

information and specifics are ALL THERE on the web site, in the Ask

Dr. Goldberg section at www.neuroimmunedr.com, and in the post

archives. Never-the-less, the Parent Coalition is currently in

the process of creating a Informational Packet, which will

contain an overview of diagnosis and treatment protocol for those

interested in learning more, educating others or exposing medical

professionals to the Treatment. A PATIENT Handbook

and PHYSICIAN Protocol and Training Documents are also nearing

completition.

The Parent Coalition is fully supportive and in fact encourages full

participation and understanding of treatment procedures, guidelines,

lab-work and medications by all Parents/Patients but, it is very

important that everyone understand that this is a MEDICAL PROTOCOL

which requires a physician's guidance and supervision and therefore

carries with it potential liability exposure (for the Coalition as

well as for the physicians). The exact treatment for each patient can

vary and requires the treating physician, along with the

parent/patient to review all previous history, lab work and

medications before making treatment decisions.

Once sign-off by the Scientific and Medical Advisory Board and our

legal counsel is complete, the distribution details for the above

documents will be posted. Rest assured, the Coalition is as anxious

as any of you to get these documents out and spread the word about

. We are a Non-profit Organization and only actual costs will be

passed on. There are grant and foundation proposals out to help

subsidize physician training and treatment for needy patients. We are

working hard to make this information and treatment available to all!

I know it is hard to hear these words but please, be patient. The

Coalition is a volunteer organization of parents and professionals. I

can't remember the last time I got to sleep before 1AM as I am up

late every night, working on this mission. I know the same is true

for almost every other member of the Board. We don't ask for

sympathy, just a little patience. I understand the frustration every

parent/patient on this list feels (please remember, every member of

the BOD is a parent as well as perhaps a patient) and I

certainly think that open discourse and exchange of questions is a

good thing. Yet as of late, the tone has become bitter and critical

and this really must stop. This list should act as our living room

where we can all feel comfortable to exchange ideas--but it is not

pleasant to have unruly, rude or disrespectful guests in one's home.

Some list members would like to use this forum to promote their own

agenda while some apparently have a personal ax to grind. I invite

those who have tried to incite contention and discord ( as well as

anyone else) to post to me directly (off-list)if you choose, with

your questions and comments but please, let us get this list back to

it's purpose.

Please read Suzanne's post (7880) and ask yourself how you can help.

Instead of screaming about all that we might not be doing, take note

of what we are planning to do. I posted an announcement message

(message 7866) about a conference call this Thursday night at 6:30

PM/PST--9: 30PM/EST. This call will be quite informative and will

review many exciting and important plans for the New Year. Please

review it and e-mail (as outlined in the post) if

you are interested in helping.

Remember, if you are not part of the solution, you are part of the

problem.

While it may be difficult, due to many each one of our own particular

circumstances, to offer help, at least don't try to create roadblocks

and

issues for those of us that are working tirelessly, to move this cause

forward.

In closing, I would like to express my gratitude and appreciation to

each

and every one of you who have given your time, energy, money and

support

this past year. I look forward to working with all of you.

With blessings and high hopes for a Wonderful Holiday Season and a

Happy New

Year,

Marc Share ( marc@...)

President & Executive Director

Research Institute and Parent Coalition

'Working To Give Our Children A Future'

[Guest guest]

Mark wrote:

> PHYSICIAN Protocol and Training Documents are also nearing

> completition.

I believe this document would be what *I* am referring to

when I use/hear the term " protocol. "

The term " protocol " in a medical sense is a document that

describes how one becomes eligible for participation in

a particular treatment methodology, describes that methodology

in detail, describes how one becomes inelible for continued

participation, and describes the medical goals for treatment

in (mostly) quantifiable terms...among other things. As Marc

mentioned, it is not the kind of document posted on a physician's

website for patient-information purposes, although these

documents can make their way to patients, through their

physicians, whose responsibility it is to help them understand

any terminology or concepts that are not normally part of

a layperson's knowledge. They might also become, as

alluded to, part of an informed consent (ie: when one

participates in a medical study.)

It appears that reference to the term " protocol " with respect to

the organization has, thus far, been much more of a

philosophical and informational document than a method of

communication of medical information amongst physicians.

I think those of us who have either medical or scientific

backgrounds might have had a particular construct about

the term " protocol " that doesn't include something that Mark

referred to as a " parents protocol " .....and his post seems to

clarify that we may be talking about two different items

here when using the term " protocol " ...the medical documents

that I'm more familiar with that appear to be forthcoming, and

the more " patient-friendly " information provided

primarily for parents, on Dr. Goldberg's website. I believe

the " Physician Protocol " that Mark refers to in the part of his

post that I highlighted above, is the document that some of us are

inquiring about, and that our children's physicians are looking for

to answer their questions.

Perhaps this has been a semantics problem all along?