Thursday, April 28, 2011

An Interview with Laura Hillenbrand

Some excerpts:

What advice would you give to others out there who suffer from ME/CFS?
The most important thing I have learned in my 24 years with this disease is to listen to my body. Everyone with this disease has different boundaries, and we find out through trial and error where they are. It’s critical to know where they lie, because when ME/CFS patients overextend themselves, the result can be utterly disastrous. Several times, I have overdone it, leaving myself bedridden and desperately ill for years. Because many patients have been accused of merely being “lazy”—something I heard all the time in my first years with ME/CFS— they often push themselves too hard to prove they aren’t malingering. I did this myself, and paid dearly for it. So my advice is to always put your body first, listen to what it is telling you and respect those signals.

What are some natural treatments and/or ways you use to cope with
I’ve been doing yoga for about a decade now, and it has been a godsend to me. Even when I’m quite ill, there are a few poses I can still do, and it’s wonderful for my body, keeping it flexible and maintaining muscle tone. It’s even better for the mind. Yoga relaxes me, alleviates stress, and quiets my thoughts. There is a beautiful and nourishing mindset that attends yoga, focusing on acceptance of yourself and your situation, living in the moment, awareness of the interconnectedness of all things, and cultivating gratitude for your blessings. There is so much loss, so much anguish, and so much stress involved in being as ill as I am; yoga helps me cope with it and love my life and all I have been given.
Along with yoga, I practice meditation. No matter how sick I am, I can always meditate, and it always refreshes me and fills me with optimism. In spite of what the disease does to me, I’m a very happy person, and I credit meditation for much of that. In my sickest years, I sometimes meditated three times a day.
I am also careful about the chemicals that go into my body. I try to buy products that are natural. I buy products from companies like Loving Naturals, which sells products that are organic, simple, natural and absolutely safe. I try to do this especially with products I use every day, like moisturizers and lip balms. Also, we only use nontoxic, natural products in our home, because we don’t want to breathe in harsh chemicals, and we don’t want to pollute the environment.

Friday, April 22, 2011

Dr. Andreas Kogelnik’s Talk on Re-Evaluating Chronic Fatigue Syndrome and Immunology

This is an extremely thorough summary of Dr. Kogelnik’s talk “Re-Evaluating Chronic Fatigue Syndrome and Immunology” at El Camino Hospital in Mountain View on April 19, 2011.

Re-Evaluating CFS and Immunology

Monday, April 18, 2011

Eating Well: Food Allergy Substitutes!

my favorite allergen substitutes

grated parmesan cheese – grated brazil nuts
ricotta cheese – replace with crumbled tofu
cream – unsweeetend coconut cream
milk – soy milk / rice milk / coconut milk / unsweetened almond milk
cream / milk – if it’s liquid you’re looking for vegetable stock or chicken stock can work.
mayonnaise – make a tahini sauce instead with equal parts tahini, lemon juice and water.
mayonnaise – replace with a horseradish sauce or
in baking cakes – half a ripe mashed banana can work in place of eggs. This won’t work if you need to whisk egg whites.
boiled eggs – replace with another protein source such as cooked chicken or tofu.
wheat / gluten
bread – instead of wraps or bread for sandwiches, use iceberg lettuce leaves to ‘wrap’ your filling
flour – for baking cakes and things almond meal tends to work well.
breadcrumbs – use coarsely ground almonds or other nuts for coating in breadcrumbs
long pasta – make ‘noodles’ by shaving carrots or zucchini with a vegetable peeler.
long pasta – spaghetti squash
short pasta – chop cauliflower into bite sized pieces and
short pasta – use drained canned beans instead of pasta
quick nut switch – if someone is allergic to one type of nuts, but not others, you can usually just use a different nut.
crunch – when nuts are being added for crunch, try substituting another crunchy element – like toasted breadcrumbs, or finely chopped red onion or diced celery
protein and flavour – replace with pan-fried chickpeas or other canned beans.

Mom's Amazing Gluten free Pumpkin Bread

1 1/2 cups oatmeal flour
1/2 tsp salt
1/2 cup brown sugar
1 tsp baking soda
1/2 tsp ginger
1/2 tsp nutmeg
1 tsp cinnamon
1/2 tsp allspice
1/2 cup walnut
1 cup pumpkin puree( I use butter nut squash when pumpkin is not in season)
 olive oil 1/2 cup
2 eggs
1/4 cup water

Combine all the dried ingredients together.
Beat the eggs. Mix eggs in with the sugar, oil, water. 
Add wet mix with the dry mix until well blended.
Mixed in the walnuts gently.
Bake in a medium loaf pan at 350F for 55 min.

Sunday, April 3, 2011

Community Housing Comes Up Again

i'm having this dream of getting better, at least a bit better and creating a place where cfs people could live while they are sick. there could be amazing caregivers who were educated about cfs, an organic garden to help heal our bodies, and a community.

what do you think, dear friends?
    • Kassy Fatooh I've been dreaming this dream and have talked to others who share it. I have a feeling it will happen some day.
      Amberlin Wu Hug bulletin boards labelled "What I do for Pain/GI problems?migraines" etc. and covered with post-its from all of the cfsers.
      Franky Dolan
      I'm feeling really sick today, and this sounds certainly, like a dream...
      Also, an art room. Or perhaps, we can have our own little art rooms, or a huuuge art room and we each get our sections. There could be a lounge room with a TV and super plush couches to completely melt into. I like that. The yard could have fruit trees abundant. Mmmm, we could pick them and eat them under each tree, in the shade on a sunny day. I actually tingle with wishes, as I think about this dream.
    • Lee Lee Ingram count me in !!!
    • Lee Lee Ingram and we'd need some spunky men to rub our feet and shoulders!
    • Kassy Fatooh I love the idea of having our own private small spaces to retreat to but sharing large spaces such as garden, art room, maybe spa?
    • Amberlin Wu a hot tub under the stars!
    • Franky Dolan Oh yes! Yes to it all... Lee Lee, I am IN big time with your suggestion too. Aaahhhh. We could have body rubs in the hot tub, after retreating to our own spaces... Lovely thoughts...
    • Kassy Fatooh It would be nice if someone well would create it for us! Any takers, out there?

      Amber Alissa Chapman When I win the lottery, I pledge to help you all!
    • Cliff Wang It's the best thing I've heard all day. And you will get better in time.
    • Sarah Goforth I'll bring my roller skates and ELO album. :)
    • Amberlin Wu I'd call it, "Comfort House." ♥

A little Levity: You Might have ME/CFS if...

You might have ME/CFS by Heidi Bauer

1. If the name Bill Reeves makes you consider joining the National Rifle Assocation, you might have ME/CFS.
2. If you can replace Bill Reeves' name with at least 5 other scientists'/politicians' names, you might have ME/CFS
3. If dreams of exotic vacations now include hired sherpa and gurney, you might have ME/CFS
4. If you dream of hiring an Oompa Loompa to pick up dropped objects, you might have ME/CFS
5. If you spend your time inventing ways to motorize your bed, you might have ME/CFS
6. If you sound like a human medical dictionary to your family and friends, you might have ME/CFS
7. If you've had experience with doctors who place your symptoms right up there with the Tooth Fairy, Santa, and the Easter Bunny, you might have ME/CFS
8. If you need to use lightyears to measure the distance from your bed to the toilet, you might have ME/CFS.
9. If you've ever dreamed of a full body transplant, you might have ME/CFS.
10. If you could create a colorful mosaic for your foyer with one month's worth of pills.

Sunday, March 27, 2011

Intending to share the journey of treating XMRV.

Santa Fe, NM
"My daughter and I are XMRV positive by culture. We have started specific antiretroviral treatment. My intention is to share our journey with the medicine and science in context as it happens."

Wednesday, March 23, 2011


cRochelle Hall and Elizabeth Basile, co-Facilitators for CFSBayArea Support Group, have begun a new support group for friends and/or family who provide care to you. If you think this new group would be of interest to the caregivers in your life, please pass this information along to them.

We meet once monthly; our next meeting will be next Monday, March 28th, from 6:00pm - 8:00pm, in our office, at 201 San Antonio Circle, Suite C-125 (building C), Mountain View. We gather to share successes and concerns, exchange knowledge from our own experiences in this role, as well as ideas to navigate challenges we've encountered.

Please feel free to contact Elizabeth Basile at or telephone my office number at 408.718.6915 with any questions you or your family member(s) or friends may have, as well as directions to our office.


Elizabeth Basile and Rochelle Hall

Sunday, March 13, 2011

PACE Study May As Well Say Cancer Is All in Your Mind

"By now, many of you have heard news reports about the PACE study out of the UK, suggesting that cognitive behavioral therapy and exercise are helpful for chronic fatigue syndrome, and misguided and misinformed media reports suggesting that this shows that the illness is all in people's minds. Understandably infuriating - and about on par scientifically as news reports about space aliens making Lindsay Lohan pregnant!
Welcome to the news media. On a good note, it leaves one wondering, what if many of the articles in those newspapers are equally off-base? Hmmm...
Anyway, two other studies came out recently as well, which add perspective:"

 To read more of Jacob Teitelbaum's thoughts, go to:

Tuesday, March 8, 2011

Defining an Illness Is Fodder for Debate, article in the NY Times

"The study, published last month in The Lancet, reported that exercise and cognitive-behavioral therapy could help people with the illness. Advocates and some leading experts dismissed the findings and said the authors’ case definition was largely to blame."
To read the article:

Monday, March 7, 2011

Cover-up and contamination theories

"While the days, weeks and months pass, the scientific community continues to work on what isn't, instead of what is. The question of how a lab contaminant produces an immune response in patients hasn't been addressed by any of the contamination theorists. And how do you manage to contaminate the patients' samples at a higher rate than the controls when all samples were blinded and run at the same time? In fact, it is the patients that are contaminated with a family of MLV-related retroviruses, not Dr. Mikovits' lab."

 To read more, go to:

Wednesday, March 2, 2011

One man's deciding to come "out of the closet" with CFS

"Until now, I've told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for National Geographic. The truth? I'm actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis. " - John Falk

To read the article, click here:

Tuesday, March 1, 2011

We are on!

Our group is now on  Let other people know that we are a collection of good people, good support and good times as well! Go to:
and sign up as a member of our group.

Wishes of warm baths and hot tea,

Monday, February 21, 2011

Videos and Transcripts of Judy Mikovits Talk 1/17/11

4 video segments are up on the website for Gordon Medical:

For those of you who don’t want to sit through hours of videos, some of these videos have been transcribed on facebook:

Tuesday, February 1, 2011

Co-op Housing and Connection

I am tired of reading about isolated CFS'ers who have fallen through the net of family and friends. I am among them. WHEN will people stop with their incredulous looks of "What is wrong with you?" My sophomore roommate lives in Santa Cruz. A 20 year friendship has dwindled away. I cannot drive down there anymore. I am now on disability-I was actually able to hold a part-time job when I had reliable emotional support. When I told this friend I was on disability, she said that she had known someone with CFS, but they "had" to work.

So I am wondering if their are others who would be interested in forming a CFS co-housing community. There are others for normal people. There must be a way of pooling our resources so that we can purchase services that would be exorbitant for someone to pay individually. Like physical therapy, a healthy food cook,etc. and no 'blank stares" from your neighbor.

response 1:
Hi Everyone,

I think that would be a good idea if everyone had their own space and could retreat from the group when necessary. It would be helpful to have company but only when you are up to it. I have often thought that I would like a place to go at my low periods to be taken care of where there are other people like me, even for a week or two. I don't need a co-housing situation at this point in my life, but it is something worth considering.

Rachel, you might want to pick up that recent book How To Be Sick. It addresses the lost family and friends that we all experience. It helps to know that you are not alone in this.

Why was the subject the Montoya Template? If anyone has something new from Dr. Montoya, I'd appreciate having it forwarded to me and everyone.

For some good news, after a relapse of 7 months of being bedridden and then housebound and then able to do a little bit more slowly, I finally feel I've recovered to my base-line illness level. This means I can do some stuff and go out maybe a few times a week. It feels so good to be back to my normal abnormal. And I've learned something from this.

For years my husband has told me that he couldn't be sick with me and I agreed. He's a doer and he couldn't sit around with me all of the time. But only with this relapse, did it occur to me that I can't be well with him either.

So I've stopped trying to be able to go places with him when I don't want to use my energy for that event and/or I don't have the energy. I skipped the awards dinner Saturday night that he had to go to since he's a city council member because I didn't want to use my energy for that. And then on Sunday we were able to do things together that I wanted to do. It was a lovely productive day and we saw 2 rainbows after the rain stopped.

This change really started when I stopped trying to control him to meet my needs for attention and company. I told him he could do whatever he wanted to do and I would stop trying to control him. He didn't believe me, of course. When he decided he wanted to run for council, we discussed it and I said I didn't want him to but that I wouldn't veto it. So he ran and won with my help. He's a lot more busy but is happier now. And now it's up to me to take responsibility for creating my own life whatever I can make of it. And we are better together and happier in our marriage as well. He's there for me in a way I have never felt before.

I've been sick with CFS for 25 years this coming summer. I'm a slow learner. But I'm learning to put myself first now to create my best life. I know I'll still make mistakes in deciding what I can and cannot do but now it will be based more on what I want to do than on what others want me to do or what I would do if I were well. I feel pretty good about this...and myself.
Thanks for listening, Esther

response 2:
I know there was a project in North Carolina at one point regarding co-housing for people with ME/CFS and Patrick H. (who was on this list but appears to have fallen off during its many reitrations) actually started a co-housing community in Texas with his mom's help for young adults with ME/CFS and disabilities. I haven't looked it co-housing opps as it doesn't fit my situation but some co-housing groups are less judgemental -- maybe you can find one for people with disabilities of different types if not ME/CFS?

For everyone else, Esther's points are well taken. As someone who has worked with caregivers in the past, I know how stressful that it can be so one of the things I try to do for my family is to encourage them to keep pursuing their interests as much as possible and not to worry/ feel guilty/ etc. if I can't participate. They know I will try to participate when I can or we'll find activities that I can do. Fortunately, there is little pressure from them or my healthy friends to participate in things that I can't.

On a related topic, ME/CFS or not, I've found knowing about my own and family/ friends' personality types helps with communication. For example, extroverts or introverts have different requirements for good relationship. The other link talks about "The 5 Love Languages," which is how differnet people give or receive love. Although it is geared towards married couples, I find the ideas interesting in general. There's an old saying about how just because someone doesn't love you in the way you want doesn't mean they aren't loving you as much as they can.

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.