Each member gave a brief check-in, and a list was created, filled with interesting topics and concerns to discuss. Included were: seeking information on orthostatic intolerance, pros and cons of flu shots, how to decide and what to consider when contemplating travel, how to pace oneself, especially when you have both a chronic medical condition and a life-threatening illness, how to answer when other people say you look well, when you are feeling very poorly, how others perceive you, use of methylene blue, irritability, low self-worth, ideas about the possibility of an on-line support group for Caregivers, information about Ampligen, ,and pros and cons, as well as application procedures for long-term disability (SDI). Quite a list!
As is always the case, the group had great knowledge and experience with many of these topics. A conversation ensued regarding irritability. For some people this may be a part of cognitive problems associated with CFS; but there may also be some cognitive problems present in addition to, and separate from, CFS. A member recommended the neuropsychologist, Dr. Harriet Zeiner, who has offices in San Francisco and Palo Alto. She is quite skilled in teasing out the cognitive problems present, as well as successful treatments for them. Members expressed interest in inviting her to speak to our group. Rochelle amd Elizabeth will try fo arrange this. Another thought is that irritability may be an indication that your energy is depleted.
Some suggestions for treating orthostatic intolerance included: wearing a compression suit, walking in a swimming pool, IV saline, eating more salt, if possible, and depending on one's tolerance, drinking caffeinated beverages to get your heart racing a bit. Also helpful may be ways to increase your blood volume.
Time was given to a discussion about the effects of Ampligen, the drug's history, and the study of Ampligen that Dr. Patel will undertake if another person can be recruited to participate in it. The participants would need to bear the cost of the drug, which is expensive. A question was raised regarding how one makes a decision about trying a medication that has serious side effects, when there has been a range of response to it, from tremendous improvement to being left much worse off after the course of treatment. What factors does each person take into account when making this decision?
Conversation also included some information about taking very diluted amounts of methylene blue in order to improve mitochondrial function. Ward has reviewed some literature regarding this topic.
People were interested in the other topics from the list, and in particular about what to say when others tell you that you look well, ideas of self-worth, and how to pace oneself with activities and travel. Since time had run out, group members mentioned carrying these questions over to next month when we meet.
August Minutes 2011
It was good seeing many of you yesterday.
We attempted to implement the egg-timer (or crystal bell-ring) method of dividing up the first hour of check-in time yesterday (in the mildest of ways), and spent the last hour in a less structured discussion of topics people expressed special interest in discussing. Among yesterday's topics of special interest:
-- The opening of mecfsbayarea group at Yahoo! Groups, which will be moderated by two group members (not Elizabeth and I). Hopefully, conversations that we can't complete in our 2-hour monthly meetings can be continued within this group! And hopefully all of you who receive this email also received an email about that new group in case you wish to join.
-- Suggestions and "reviews" of local docs, both primary care and CFS specialists.
Those present shared experiences (often mixed) of docs including: Ravin Agah (internal medicine & infectious disease, @ PAMF), Raj Patel (Lyme disease specialist), Andy Kogelnik (infectious disease, MD, PhD), Lawrence Epstein (Internal Medicine), Deborah Metzger (Los Altos, http://www.
harmonywomenshealth.com/), Jose Montoya (Stanford, Valcyte study), Peter Cassini (neurologist, Palo Alto). Among out-of-town docs discussed: Martin Lerner (http://www. treatmentcenterforcfs.com/).
-- Additional topics: Experience with or knowledge about oxygen toxicity, use of famvir combined with ritalin; Ampligen study (one more person needed for new study to begin -- more info available via this email address or Yahoo group), and ideas for educating people about PG&E Smartmeter hazards (a member has found endorsement of this pursuit from Dr. Agah).
-- Any ideas out there around creating an ME/CFS Bill of Rights?
-- Coping Strategies! This topic often is raised -- stories about people's efforts and successes are always invited! Specifically asked about this week: Coping with travel, with family stressors, or with stressors related to complications people with ME/CFS experience in legal, insurance, and various professional (as well as personal) realms.
Jay re-introduced his offer to facilitate a series of "Coping Skill/Strategy" workshops; he has invited those interested in separate set of meetings around this topic to let him know of your interest.
This is a small sampling of topics, ideas, and information people shared this week.
As always, your ideas for this group are appreciated; Elizabeth and I will do our best to help things run smoothly.
Best wishes & hope to see you in a month,
Rochelle & Elizabeth, co-facilitators
July, 2011 Highlights of CFS Support Group
Thanks to all who were able to make it to this month's meeting. Here are some (as opposed to all) of the topics people addressed yesterday:
-- Use of naturopaths for treatment.
-- Sleep issues, including use of pharmaceuticals such as Trazodone and Ambien (plus others -- helpful to some, but not to all). Some people discussed usefulness of Zeo, a sleep-tracking tool, and the possibilities/complications around more than one person sharing one to reduce the expense.
-- The IACFSME (International Association for CFS/ME - http://www.iacfsme.org/) will be releasing clinical guidelines by the end of September that should help with information about therapies for sleep and pain issues.
-- Treatment (ie., Zeolite) for lead and mercury poisoning.
-- Electrical hypersensitivity: Health risks and politics associated with PG&E smart meters, symptoms known to be connected with electrical hypersensitivity. See http://stopsmartmeters.org/ for additional information about this problem.
-- Discussion of Chronic Lyme Disease
-- Exchange of members' experiences with various doctors -- an ongoing area of interest. (Some, not all, docs whose names came up: Nancy Klimas, Jose Montoya, Lucinda Bateman, John Chia, Kent Holtorf, Raj Patel.
-- The issue of affordable / shared housing was discussed. Some of our members may be seeking renters & others seeking affordable housing. Ideas discussed included Section 8 housing, Alma Place in Palo Alto (http://www.
paloaltohousingcorp.org/ properties/alma_place.htm), and
HIP Housing in San Mateo County (http://www.hiphousing.org/
-- Use of nutritional supplements, including whey protein and vitamin B12 injections.
-- And last but NOT least:
A couple of members raised topics dealing with lifestyle challenges. I'll put them out to you as questions (with the ALWAYS-applicable qualifier that one size does not fit all -- but that maybe sharing ideas & experiences can offer something useful):
Because symptoms of this illness often show up with little or no warning, plans often have to be cancelled, sometimes at the last minute -- particularly frustrating when those plans involve people who don't understand ME/CFS. But in general it's just frustrating not being able to stick with one's hoped-for plans!
* Have any of you found ways of dealing with this that have been helpful to you?
* How do people manage health challenges and stress when family members are not supportive of your efforts to deal with this illness?
* * *
It was great having around 12 of you in attendance yesterday, and many apologies to those who didn't get to "check in" following our initial intro due to time running out!
I think we may try the egg timer method next time, just to see if that helps or hinders...
It's sooo challenging cutting short energetic dialogues that are generated by people's check-ins, but we'll keep trying to collaborate with you in making things run as smoothly as possible.
Thank you all for your warm support and amazing energy (I chose that last word on purpose).
* * *
Here are links to a couple of fantastic blogs managed by two of our members:
February 20, 2011 Highlights of CFS Support Group
We welcomed a new member to the group on Sunday. Our new member had much
to share regarding his numerous experiences with physicians, researchers, and
various protocols, both in different places in the U.S., as well as in Germany. As there
was much interest and curiosity from group members, many questions were asked,
including questions concerning the research project being carried out by Dr. Petersen
Another discussion ensued regarding changing the format of the group slightly, and
introducing some new topics into the monthly meetings. There was interest in the idea
of initially having a brief (3 minute) check-in to begin the meeting. After this check-
in participants could then continue in the existing model, with questions, sharing,
concerns, successes, etc. Interest was also expressed in giving more time to the
subject of "quality of life" ideas. Initial suggestions included meditation, auditory
meditation, guided visualization, sharing and seeking knowledge with people dealing
with other chronic health conditions.
Some thought was also given to ways in which people with CFS can keep their minds
occupied, a particular challenge at those times when brain fog is especially present. In
addition to keeping the mind occupied, the idea of ways one can feel useful was raised.
Group members welcomed discussing these topics, as well as other ideas that might
originate in group meetings, as a component of future meetings.
January 2011 Meeting Notes
-- We welcomed a new member who is interested in hearing from people who've worked with either Dr. Kogelnik or Dr. Montoya. A few of our members were able to share their experiences. (If you weren't there and have some recent experience with either doc, that could be of interest.)
Other areas of discussion included:
-- Working with docs and hospitals who may be ignorant about CFS. Many of you have the experience of using a label besides CFS when requesting treatment for symptoms. "Orthostatic Intolerance" is one term some members have used successfully when talking with friends, coworkers, etc.
• People's experience with meditation as a way of dealing with CFS symptoms varies (like everything else). There was discussion about how ways of practicing meditation may shift over time, as does the way this illness manifests over time. While some in the group have found meditation to be quite helpful, like everything else, one size does not fit all.
• Suggestions around "not giving up" on it included keeping expectations around meditation practice quite minimal (ie., a moment of awareness like "I'm thinking about meditation right now" counts!), and NOT measuring one's practice in terms of "success" (or "lack" thereof) is also a defining aspect of meditation.
• The book "Real Happiness" by Sharon Salzberg was recommended. It comes with a guided meditation CD; Salzberg has other meditation writings & materials out there as well.
-- One of our members, Jay, has offered to share some Coping Skills tools he's taught in various settings over his years of practice as a psychologist. Since some of you have expressed interest in this, we're working out the details on how to schedule his presentation into our meeting time. More to come on that.
-- People shared experiences around "coming out of the closet" in a world that doesn't understand (or sometimes recognize) CFS. People spoke about dealing with anger, how to manage environmental toxins, ways to stay hydrated safely (coconut water, pedialyte), and about ways of building communities of support among friends and family.
-- A question that sparked interest was about self-worth: How does your sense of self-worth evolve in the face of chronic illness/CFS? Since being diagnosed with this illness, how have you maintained, renewed, and "exercised" your own sense of self-worth as a part of this community?
Elizabeth and I believe that your knowledge and experiences are among the very best information sources out there about living with this illness, so our hope for this group is to keep the experience-sharing environment safe and fertile.