Saturday, January 22, 2011


I love this. Thx Amberlin for all you have done to maintain our group and keep it up to date. :)

Wednesday, January 19, 2011

New blog!

We are just in the beginning stages of developing a place for patients with CFS to see what our group is all about as well as for the members to stay connected. The hope is to document what has happened in meetings, perhaps develop a "great medical professionals" referral list, other resources such as books, youtube videos; we are limitless really! If you have thoughts, ideas, suggestions, constructive criticisms, feel free to send any of the above my way.

I will be managing the blog so you can email me at

Bonkers for blogs,

Tuesday, January 18, 2011

Notes about the Mikovits/Whittemore talk

Some of us met for lunch at the Santa Rosa Whole Foods (despite the uncomfortable seating) and then lounged in Ward’s spacious van in the parking lot, before heading over to the talk. Judy Mikovits is a dynamo! And Annette Whittemore was also impressive—she had to stand in for Judy, and present Judy’s slides, as Judy’s flight was very delayed (7 hours due to fog—but not brain fog). Judy eventually showed up (at 3:45, after the scheduled end of the talk), and spoke for an hour. Apparently there will be a video of the talk posted on Gordon Medical’s website at some point. And there is supposed to be an emailing suggesting ways we can effectively advocate the NIH and other organizations so that we are speaking with a mostly coherent voice.

A local patient/advocate gave a thorough report on yesterday’s Mikovits talk in her blog:

Here is part 2 of the Mikovits/Whittemore presentation review:


Sunday, January 16, 2011

Welcome Letter

Thank you for your recent interest in our CFS Bay Area Support Group. We would like to welcome you as a prospective member and hope that you will be joining us in the near future. The following is intended to provide you with general information and requests as well as provide answers to some basic questions that you may have.


Chronic Fatigue Syndrome sufferers have often been left to find their support systems
by way of their computer systems. The internet has been and continues to be a valuable medium that has allowed CFSers to connect with one another. Despite this resource having been available three years ago there was still a desperate need for an in-person support group in our area. In 2007 we congregated in the living room of my home in Mountain View and held our very first meeting. In 2009 we restructured the meetings and with the help of member Amberlin Wu we found two brilliant co-facilitators to lead the group. Rochelle and Elizabeth have been a blessing in keeping our group ongoing. They were successful right off the bat in finding a new location to accommodate us. The group’s longevity has been largely reliant upon the efforts of these ladies.

Details about the meetings are as follows:

Meeting Location
Camino Medical Group
Third Floor, OB/GYN reception area (turn right out of elevator)
701 E. El Camino Real
Mountain View, CA 94040

Meeting Dates

Currently we meet every 3rd Sunday of the month from 2p-4p.
An email is usually sent out to the group in advance as a reminder.

Group Members

Our group is intended for those who are afflicted with Chronic Fatigue Syndrome. We
also welcome those with Fibromyalgia and those who suffer from similar conditions.
We encourage family, friends and those hoping to learn more about CFS to attend our
meetings as well. This will continue to be the case so long as visitors are respectful of the medical validity of CFS as well as the confidentiality of personal information shared within the group.

Meeting Expectations

The hope for CFS Bay Area has been to offer on-going and supportive meetings.
It is our hope that members will…

  • Receive and give emotional support and encouragement.
  • Have opportunities to be heard and to share
  • Give others the opportunities to be heard and to share.
  • Have an opportunity to meet experts in the field.
  • Have a safe and supportive place to cry together and to laugh together
  • To exchange thoughts and experiences, personal updates, improvements & set-backs, information such as new research, current studies, treatments, doctor suggestions and advocacy ideas.

CFS members range in age, ethnicity, sex, gender and severity of their illness. Please respect each others’ differences, disabilities and sensitivities. We ask that you always:

1) Keep confidential any personal information shared during group meetings, emails,
etc. If there is personal information you believe would be helpful to others
outside the group always ask permission first before sharing. This will give
members a sense of comfort and safety in sharing personal information with each
other. Additionally, please do not share members’ names and health diagnosis
information on message boards, chat forums, etc…

2) Remember that our meetings are always fragrance-free. Although there is no way
of eliminating fragrances all together, please refrain from perfumes, colognes,
scented lotions or strong soaps/detergents that may be problematic for members
with multiple chemical sensitivities.

E-mail List

Once you have expressed interest in attending the group your first name and email
address will be added to the group email list. This is done so that meeting reminders or
other CFS information can be sent to you and so that members can communicate with
each other via email if they so choose. (Please do not share email addresses with others.)

If you prefer that your email address be blind copied and not shared with group members please let Rochelle or Elizabeth know ASAP. Additionally, if you wish to be removed from the email list all together you can request that as well via an email message.

Meeting Donations

In 2009 changes were made to the structure of our group in order to create meetings
that were sustainable. We acquired the help of our co-facilitators who have taken the
lead on many responsibilities. As with many support groups, it seems appropriate that
donations be made for their continual efforts and for covering overhead costs. Donations
at our meetings are never required or expected. However, for those that are able, small donations are greatly appreciated to offset their time and efforts.

Please keep in mind the many responsibilities that are handled by our co-facilitators. They correspond with new members, organize guest speakers, spend time traveling to and from meetings incurring travel expenses, make their personal weekend time available for our group, research and read up on CFS at their leisure, provide us with the opportunity to have reliable meetings which are lead by supportive and educated co-facilitators, provide light refreshments when they are able and continually do work behind-the-scenes.

Comfort Items

Please feel free to bring items that make your time at our meetings more comfortable.
Although it seems to fly by, two hours can be a long time for us. Examples might be
a pillow to use against the back of your chair, sunglasses if the lights bother your eyes or even a special snack for yourself that fits your dietary needs. I sometimes bring my slippers to wear since they are so cozy.

Contact Information
Group email:
This email address is currently maintained by Rochelle and Elizabeth.

Group Facilitator & Founder: Monica Zavala, (408) 469-0366

I hope that this letter has provided you with helpful information and answers to any
questions that you may have had. Feel free to email the group co-facilitators or myself for any additional information. Please also keep my phone number available if ever you are having a rough time and need someone to talk to. Once again we are very happy you have contacted us and we look forward to meeting you at an upcoming meeting.