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.

After researching 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).

I 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.
Bruce 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.

I think 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, NJ

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 about.

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 Grove, Ill.

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