CFIDS Protocols and Research

Here is the info on CPAR (CFIDS Protocols and Research). Currently,
membership is open to health care professionals only. Only people
subscribed to CPAR can post to it.

                Welcome To CPAR

Subscriptions are open via nomination by other members only.  CPAR will
remain small as it is for a select audience.  Please nominate others who
you would like to see as a fellow/sister participant.  To do so, e-mail
either of the moderators at our respective addresses: or

This Forum is for pwc Health Care Practioners and related Professionals
(Researchers, Educators, etc.) with CFIDS or whose lives are affected by
CFIDS.  The CFIDS Protocols and Research Forum is not meant to replace any
other current CFIDS List.  It is an adjunct Forum for pwc professionals.

To submit a message to the forum, email to

What You May Expect of The List

1.  A conflict-free environment in which to discuss CFIDS treatments and

2.  The latest Medline abstracts related to CFIDS and other related
up-regulated immune system disorders.

3.  Help for pwc's to communicate their symptoms, concerns and expectations
with their practioners.

4.  Discussion and dissimination (where practical) of the latest CFIDS
research so each participant can make more informed decisions.

5.  Discussion of skills that allow us to cope with the losses attendant to

6.  Questions germaine to CFIDS and other up-regulated immune system

7.  Information on how to obtain social security disability benefits.

8.  Nominations and recommendations of knowledgeble and caring CFIDS
practioners (as per The National CFIDS Association Physician's Honor Role
and List participant nominations).

9.  A World Wide Web presence offering useful information and pointers to
other CFIDS resources.

What We Hope You'll Contribute To The Forum

1.  Sharing of information you have and come across in your daily
life/medical searches/contact with other pwc's on protocols that you think
will be helpful.  We can all further ourselves toward full remissions if we
all work together.

2.  Discussion of what works and doesn't for you in terms of
relief/abatement of symptoms.  (Please note that what works for one pwc may
not for the next).

3.  Sharing of what you can do to make your daily life more meaningful
despite CFIDS.  For instance, what activities you can engage in that don't
worsen your CFIDS symptom complex.

4.  There is no expectation of you to participate beyond the time and
energy level that you can afford.  That means there is no pressure for you
to perform here.  Contribute only what you comfortably can.

5.  No slander, defamation of character, libel or personal attacks of any
persons (whether on or off the List) will be allowed under the umbrella of
First Amendment Rights for two reasons: (1) this behavior is not covered
under First Amendment Rights and (2) human dignity is precious.  Any
participant who engages in harmful behavior will be immediately and
permanantly expelled from the List.  The final determination of what
constitutes harmful behavior is made by the moderators.

6.  We want this Forum to become known by all CFIDS
researchers/practioners/professionals as a terrific place to be.  This
means no wholesale slaughtering of the health care professions.  We've all
had some negative experiences in our journeys.  Let's share about the ones
that have worked for us.

7.  Each person has their own unique experiences to share.  If you disagree
with another participant's treatment oriented point of view, simply share
your own experience in the form of an "I" statement regarding what has
worked for you.

8.  Please let others know when you are sharing first-hand experience.

9.  Everyone here has much to offer.  Some here are physicians,
epidemiologists, researchers, toxicologists, therapists, educators, CFIDS
activists/lobbyists to name just a few representative professions.  Rather
than withholding your valuable expertise, if you are concerned for
professional reasons about others knowing you are a pwc, just use your
first name and no identifying information about your location.

Other Information

We will at no point make available any personal identifying information
about Forum participants and the program running this List has safeguards
which allow no breach of same.  To wit: non-subscribers of the forum cannot
get a list of members or post messages to the forum.  However, please note
that subscribers _can_ get a list of other members at present.

This Forum will always take the moral high ground.  If you'd like an issue
addressed that you feel is not being addressed appropriately, please notify
the moderators at our addresses and we will attend to the problem at our
first available opportunity.  The buck stops here.  This is a place on the
Internet where you can expect and get accountability from all involved.

All who are subscribed to this Forum are professionals who we know to be
kind, informed, intelligent, helpful and ethical.  All future prospective
subscribers will be pre-screened for the same qualities and in all
likelihood the Forum will remain relatively small as others are allowed to
join only on a referral basis.

A WEB page is going to be created for this Forum (more about this later)
and you'll be invited to introduce yourselves there as well as in your

About the Moderators

Rona H. holds a doctorate in Psychology and has advanced training in
hypnosis for the treatment/abatement of symptomatology as well as advanced
training in trauma/critical incident debriefing.  Her psychotherapy
practice is broad spectrum with an emphasis on cognitive behavioral
therapy.  Approximately 1/3 of the patients she sees in her practice live
with up-regulated immune system disorders (including CFIDS, Fibromyalgia,
Multiple Chemical Sensitivities, Lupus, etc.).  She is on the National
CFIDS Association Physician's Honor Role in her role as a licensed
psychotherapist because of her expertise in working with pwc's.

With the exception of a 2 year forced "hiatus" from work (1989-1991) due to
the onset of CFIDS, in addition to her private practice of 14 years, she
has conducted stress management trainings (for corporations and
government), facilitated chronic pain support groups, and taught
assertiveness trainings and self-esteem seminars.  Previous to going into
private practice, she taught Psychology on the Community College Level.
She is honored to be the ongoing facilitator of her county's Women's HIV
Positive Support Group.

David Neal is a computer consultant who has been using Usenet and The
Internet for far too long.  He volunteered to help Rona run her mailing
list because he recognised the need for a quiet place for PWC's to exchange
factual information regarding their disease.

He is available to answer questions regarding operation of the list.
E-mail can be sent to and David will respond in 1-2

Medical Disclaimer

Cpar and its owners/moderators do not engage in the practice of medicine.
Cpar and it's owners/moderators are not a medical authority nor do we to we
claim to be a medical authority.  In all cases, we ask that you consult
your own body and physician regarding any course of treatment or
medication. :-)

"When you stand for nothing you'll fall for anything"

Cyndi Norwitz / / Last Modified: 1/31/97

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