How does Michelle do it?
I would like to hear from Michelle Akers'
doctors about how they
are treating her CFIDS. Obviously they are doing something revolutionary to keep her body functioning
at the level it is. Why isn't their treatment the standard treatment for all of us with CFIDS if it is
working so well for her? Share those treatments with the rest of us with CFIDS and the CFIDS medical community.
Even if they are expensive, they can't be more expensive than maintaining thousands of us on disability
If her treatments can keep her running for hours in the heat, think what they can do
for the rest of us who just need to be able to sit upright, get to work, think normally and walk up a
flight of stairs without needing to stop and catch our breath. And don't tell me it is change of diet
and prayer that is helping her. We all know it's more than that.
Kit Cohn, Middletown, NY
Effective thyroid treatments
The reader survey of treatments (July/August
1999 issue) intrigued
me-particularly the mention of thyroid supplement results, which suggested that 64% of the respondents
were only helped a little, or had no effect. One year ago I would have been in that category. I was on
Synthroid (the standard recommended medication). This year I reviewed Teitelbaum's From Fatigued to
Fantastic, which mentioned that some patients respond well to Armour Thyroid Tablets and some to
Synthroid. I wasn't aware that there was any other thyroid option besides Synthroid.
treatments for hypothyroidism, I discovered even more options. Then I discussed what to do with my health
care professional and she placed me on Armour thyroid tablets. The change was noticeable almost immediately.
Currently I am at the 60mg dosage level and have stopped my amitriptyline and B-12 shots. My sleep is
steadily getting longer-a minimum of two to three hours every night, with occasional six to seven hour
nights. Although Armour thyroid tablets may not be the cure, in my case they definitely helped. I would
encourage everyone with CFS or FM that is taking a thyroid treatment that does not seem to be working
to research other options.
Joe Bellefeuille, Lexington, SC
Realistic self-help for PWCs
To have realistic expectations about CFIDS, it
is useful to
distinguish between those things we can control and those we can't. An interesting example is provided
by the accounts of two PWCs who used similar strategies in responding to CFIDS---Dean Anderson ("Recovery
from CFIDS," Winter 1996) and JoWynn Johns ("Living within my envelope,"
March/April 1999). Both focused on accepting the reality of the illness and the need to lead a different
kind of life---finding limits by listening to their bodies, experimenting with activity levels, keeping
detailed records, pacing themselves by interspersing scheduled rests with periods of activity and learning
from their experiences.
Both have been able to reduce symptoms sig-nificantly through this approach.
Their levels of functioning, however, are quite different. One has returned to a nearly normal life while
the other is still housebound. Their different experiences suggest that even though we may not control
our level of recovery, we may be able to exert significant influence on how we feel (our symptoms).
would also like to mention two new developments in the CFIDS self-help program since JoWynn Johns wrote
her review of it ("Support for changing our lifestyle," July/August
1999). In addition to offering the course over the Internet using e-mail, we now offer a "chat" version
as well. We also are preparing for publication a group study guide edition of the CFIDS Helpbook.
The new volume will contain revised and expanded material as well as information on starting a CFIDS self-help
group, including session-by-session class schedules, leader instructions and student worksheets.
Campbell, PhD, Palo Alto, Calif.
Let's stop blaming ourselves
I must respond to a line in Hanna Fingeret's
article on Taijiquan
in the July/August issue of The CFIDS Chronicle, where she says "I developed CFIDS in a classic
manner; I was living an acutely unbalanced life." She then goes on to describe how her life was unbalanced,
including antibiotic overusage and workaholic behavior. I wish we would stop reinforcing that stereotype
among ourselves. I do not (and did not before CFIDS) have a "type-A personality." And I resent when people
make the assumption that is what causes CFIDS to develop.
Before I got CFIDS, I had a strong spiritual/reflective
lifestyle-praying, yoga, meditation at least twice daily with moderate aerobic exercise, and a 35-hour
work week (no overtime, taking work home, skipping vacations or long commutes). I never used antibiotics
or pharmaceuticals. I didn't smoke, drink, stay up late into the night or engage in any self-destructive
behavior. I didn't even drink coffee or tea. I did not come from a dysfunctional family.
reinforcing these myths about why someone develops CFIDS keeps us from addressing this illness in the
way it needs to be. I used to feel I bore the responsibility for my CFIDS. But after 11-plus years of
trying to find some way to keep the illness in balance, including using the "heal your body" philosophy
with affirmations and changing negative thought patterns, I am willing to concede that changing my mindset
has little effect. I think it's time for us to hold others responsible for this illness too and look for
other causes, including environmental contamination and immunizations.
Susan Hoff, Ocean Grove,
Appreciation for Association
I just wanted to say thank you. Over two years
ago, after seeing
about six doctors I was finally diagnosed with CFIDS. I thought I was going crazy, and I was only 15 years
old at the time. I knew something was wrong with my body, but every test kept coming up inconclusive.
After a long struggle, I am doing much better. I found doctors that really helped and were there for me.
A friend of my mother's is a member of the Association and sent me information about the organization.
Reading some of your literature made me realize that someone out there knew how I felt. I was no longer
alone. No one had ever heard of this illness before I told them about it. The superintendent of my high
school almost did not let me graduate due to my absence from classes due to my illness; he thought it
had to do more with mental issues. That infuriated my doctors, who explained to him what CFIDS is all
I did graduate from high school and am now a freshman in college. I am lucky I had such
an understanding and supportive family or else I couldn't have done it. This illness really needs to be
more known because it is such a horrible thing to go through. Thank you for letting people know that CFIDS
is real and that it affects real, everyday people. I'm living proof.
Tricia Stachowski, Buffalo
Post-mortem studies may help
I, like others, appreciate the efforts made by
The CFIDS Association
to ensure that government money goes to where it was designated. Now that we know the money for CFS research
will be returned, let's make sure it goes to studies that will lead us to a cure.
There are many
avenues we can explore that are virtually dead ends. Instead of wasting money on those projects, let's
find what will really help. An idea that I have not heard proposed, but was recently suggested by a noted
physician, would be to conduct post-mortem studies of individuals diagnosed with CFIDS who have passed
away. Researchers could test for Borrelia burgdorferi, CMV, and other proposed causes in the brain. Blood
tests for those illnesses are not very accurate, but by using electron microscopy, researchers could perhaps
directly pinpoint the causative agents for CFIDS.
It is quite possible that the agent responsible
for CFIDS is a known bacteria or virus, however, it could be years before the blood test technology will
be able to tell for sure. We need to be aggressively looking for that agent now rather than wasting our
money on projects that will not pay off in the near future.
Joe Burke, Glassboro, NJ
Retreat offers chance for rejuvenation
The Albany Health Management Associates (AHMA Inc.) held
"The Healing Journey: A Retreat for Individuals with Chronic Illness" on Saturday, November 6, 1999 at
the Angell Hill Wellness Center in Spencertown, NY. The one-day retreat was designed to provide
participants with a relaxing, supportive environment in which to share their stories, explore coping strategies
and gain a renewed sense of hope.
Attendees participated at their own pace and took part in gentle
yoga, meditation, bodywork/massage, group theater and other activities. Patricia Fennell, MSW, director
and president of AHMA, utilized her Four-Phase Method for "rewriting" the illness experience. "A retreat
is a way to learn from others who’ve already traveled the path of chronic illness and found ways to make
it easier," says Fennell. "You have the opportunity to tap into all of that wisdom."
If you wish
you hadn’t missed this retreat, contact AHMA--they are considering holding another retreat in late November
if there is enough demand, and there will be additional sessions in the spring. Call 518/392-2160 or 518/781-0551,
or e-mail to email@example.com for more information.