Chronic Fatigue Syndrome Case Studies
Meridian Institute ~ May, 1998
Six individuals participated in a 10-day live-in instructional/treatment program in April, 1997, in which they were taught the elements of the Edgar Cayce therapies for chronic fatigue. Of the original six, three returned six months later in October, 1997 for a follow-up weekend to assess progress. One year later, in April, 1998, all six filled out a follow-up questionnaire.
Chronic fatigue syndrome (CFS) is a debilitating disorder characterized by profound tiredness or fatigue. In addition to these defining symptoms, patients generally report various nonspecific symptoms, including weakness, muscle aches and pains, excessive sleep, malaise, fever, sore throat, tender lymph nodes, impaired memory and/or mental concentration, insomnia, and depression. CFS can persist for years.
The Cayce readings do not refer specifically to chronic fatigue syndrome, since this syndrome has only recently been labeled. In Cayce's time, the symptoms were typically referred to as neurasthenia, which roughly translates as "nerve exhaustion." The Cayce treatment approach to neurasthenia and fatigue involves cleansing the body of toxicity and rebalancing it physiologically, as well as working with the mental and spiritual aspects of the condition. The principal therapies in this project included a cleansing regimen of castor oil packs, massage, and colonic irrigations; dietary changes; Atomidine to stimulate the glands; the radial appliance to equalize circulation and relieve fatigue; and attention to the mental/spiritual aspects of the disorder.
Participants who followed the protocol (but none completely or perfectly) reported variable degrees of improvement. One (CFS1) had an enormous improvement, and one (CFS4) had a moderate improvement. Two others (CFS3 and CFS2) had some improvements over the course of the year, but also had some relapses. The final two, CFS5 and CFS6 followed little or none of the protocol, and reported no improvement in fatigue symptoms. All participants, however, reported mental/spiritual improvements as a result of participating in the project.
Chronic fatigue is a particularly difficult disorder to work with in terms of both the diversity of symptoms and compliance with the protocol. Because of the diversity of cases labeled chronic fatigue, there is a need for more individualized treatment protocols than we were able to provide in the project. In addition, the motivation and ability to follow the protocol are often a problem in chronic fatigue, so more attention must be given to support.
Below are case reports based on the initial questionnaires and the six-month and one-year follow-up questionnaires. Comments from letters and interviews are included as well.
CFS1 is a 49-year-old woman from the South, and began the project unemployed and disabled. Her chronic fatigue symptoms began in the early 1980s (about 15 years ago). Her symptoms at the beginning of the project were severe; she was even too tired to attend some of the activities at the conference itself. As a result of following the treatment protocol she had a remarkable recovery, with great improvement in all symptoms.
She described her symptoms at the beginning of the project. They included constant fatigue, muscle and joint pain, mental confusion, and short and long term memory loss.
Medications included: Wellbutrin (200 mg./day, for 5 years), Amantidine (200 mg./day, for 10 years), Desipramine (75 mg./day for 6 years), and Motrin as needed for pain relief. She had also tried a variety of more holistic medicines, including Evening Primrose oil, gotukola, ginseng, and gelatin. She practiced meditation on a regular basis. She enjoyed working in the garden, but was limited in the past year because of an inability to deal with the heat and humidity in the South.
CFS1 recognized the importance of a spiritual support group in her initial questionnaire. She wrote, "Need 'Search for God' group. We have made several attempts since we relocated from Los Angeles, but with no success. I feel the meetings we had were bountiful for my body as well as spirit."
CFS1 did not return for the six-month follow-up, but she did answer the questionnaire for the one-year follow-up. Her initial score on the CFS symptom list was 59; at the one-year follow-up it was 7, a 52-point improvement. On the summary questionnaire she rated her fatigue symptoms as "Much improved – drastic improvement." Her other symptoms were "Much improved – drastic improvement," and her attitudes/emotions were "Much improved." She reported her degree of disability from CFS as "Much less disabling."
CFS1 followed two aspects of the protocol all the time, the diet and the radial appliance, and reported "drastic improvement," both in fatigue symptoms and in mental alertness. She was able to totally eliminate the antiviral medication she had been on, and decrease Wellbutrin by 50%. She commented:
"The protocol and most especially the diet has been responsible for major breakthroughs in my life"
"My mainstays have turned out to be THE DIET, meditation, & yoga on a daily basis. I found the diet allowed me to 'stray' occasionally with no side effects other than temporary 'additive' problems. I have increased my energy, ability to deal with people, exercise, & general alertness of mood by as much as 1000%."
"The only block for me at this point is stress level. Small amounts I'm OK. If the level of stress is low to medium and I am maintaining diet, I'm OK. If I'm straying off diet ability to cope is manageable – I'm not knocked to the floor. However with heavy and continuous levels even with the protocol I'm having difficulty – sharpness of mind is decreased – so is energy. But even with heavy stress I'm not in bed for days or weeks. So this in itself is a great improvement".
"This past year has shown me and my husband many miracles not just in my health but our relationship. We both attribute this re-birth (if you will) to the diet, the readings, our old Search for God group in Southern California, Helen Ruth Shroeder and her vast understanding of the readings, and most of all – all of you at Meridian – you have changed our lives forever. Thank you".
"Jim and I also know that given time I will be able to overcome 'stress' through the protocol."
"In addition to all of these gifts, I've lost about a pound a week since we left the beach – 58 to be exact – I'm now at 122 pounds!"
CFS2 is a 59-year-old woman, a workshop leader and psycho dramatist from the mid-Atlantic area. Her chronic fatigue symptoms began 9 years earlier. She had moderate improvement during the first six months of the project.
She described her symptoms at the beginning of the project. Her chronic fatigue began, "in 1988 dramatically – sudden onset – had to quit my job immediately – couldn't function by ¾ or more. Previous 5 years or so I'd have bouts of extreme fatigue but could snap out of it in 3 days or so, partially, enough to work some. Social activities and activities at home have been drastically curtailed." She listed symptoms including debilitating fatigue, depression, sleep disorder, sore throat, impaired mental function (forget, confused, can't focus), muscle pains (stiff, tight), and recurrent headaches and nausea. She reported a history of migraines (her mother, aunts and uncles, and 3 daughters also have them), sinus infections, yeast infections (candidiasis), fibromyalgia, and in 1988 was diagnosed with cytomegalovirus.
She added, "Fatigue still continues to be the most troublesome symptom since it curtails all areas of my life. I function minimally since if I overdo anything I get a spiral of symptoms – sore throat, hot patches, headaches, can't sleep, upset stomach, pains and aches. When this happens my mental functioning is severely depressed until I get some energy back and the pain stops. Depression is much milder the past two months."
At the beginning of the project she stated: "I just weaned myself off of Effexor (an antidepressant) in the past month." The prescription and holistic remedies she was taking included thyroid, DHEA, tri-estrogen, oil of primrose, and a variety of vitamins and minerals.
CFS2 had tried a variety of remedies for her chronic fatigue, including acupuncture, massage, chiropractic, spiritual/emotional therapy, use of stones/crystals, and change of diet. She noted, "Because of feeling worse after exercise and then deteriorating disks and pinched nerves I have been unsuccessful in staying on a physical fitness program. I need help in being consistent in choosing proper nutrition for me."
At the six month follow-up, CFS2 had moderate improvement in her symptoms. Her initial score on the CFS Symptom List was 80, and at six months had decreased to 51, for a 29-point improvement.
At the one year follow-up, CFS2 rated her fatigue symptoms as "Slightly improved." She had the second worst compliance with the protocol (after J.S.). Her best compliance was with the diet and colonics; she did none of the other elements of the protocol (except occasional massages). Even the diet was only followed "Often," as opposed to "All of the time" or "Most of the time." She said that she tended to cycle a lot, with two major cycles down in the last year. She rated her other symptoms as "improved," but noted that the muscle pain is worse, and the mental confusion is about the same. She did not fill out the CFS symptom list again.
She had several specific comments in a telephone conversation:
- " Diet is a very good thing for me,
- mental and emotional was very good – meditation and dreams helpful,
- radial appliance did not work for me at all,
- castor oil packs were a little helpful. Colonics, massage, and chiropractic were good."
CFS3 is a 49-year-old man, the owner of a pharmacy in Canada. He had had chronic fatigue symptoms for 16 years, which had become worse four years ago. He complied well with the protocol. He reported moderate improvement in the first six months of the project, but had worsened again by the one-year follow-up.
In the initial questionnaire, he wrote that his chronic fatigue symptoms began, "about 1981 (nervous breakdown) after about 2 years in business. However, about 1993 with changes in economy and birth of son – worse symptoms." He described his symptoms: "Great fatigue in the morning, could sleep till 11 AM. However, if I get going it's OK. Have to go for a nap between 2 and 4 (been doing that for about 2 weeks). Dullness in head, irritation, trouble with memory, leg dull fatigue and draggy, pain in hips, no energy at night for family (except now with change in work hours), trouble sleeping, getting to sleep, restless."
In further comments, CFS3 wrote, "Last 3 years have been really tough due to firing a couple of popular people in store and then having the backlash. Tough energy in store. A real test of Edgar Cayce principles in love/forgiveness/karma/attitude. It works; however, the energy drain has been tremendous in the last 3 years. The staff has pulled together to keep the business up and running. However, we have all paid a big price. They realize the world economics has hit home…I give health lectures on Edgar Cayce, homeopathic, herbal, etc. I feel re-energized whether it be at a meeting or in the store with one person. I believe my major symptom is mental fatigue that shows up also with hip problems (dull ache on top) and dull feet. When I exercise or play hockey, I feel somewhat re-energized. I feel that I could get better down in Virginia Beach (even if my symptom diagnosis may not truly be CFS) and also learn different therapies/techniques for others up here – another lecture/preaching."
At the beginning of the project, he reported using the following medications, in general, not prescription medications: Oral chelation (cardiolyte and phospho drops), vitamin C, flax oil, cal-mag citrate, ginkgo biloba, caprylic acid, Nystatin, parasite cleanse, vitamin E, selenium, Jerusalem artichoke tabs, amino acid complex, homeopathic influenzum (1 month), hypericum (1 month). The caprylic acid and Nystatin are antifungals, presumably for Candida, though that was not mentioned. And hypericum (St. John's wort) is an antidepressant. For other therapies, he gets chiropractic adjustments every two weeks, meditates once a day, attempts to follow the Cayce diet as much as possible, and gets regular exercise.
CFS3 did not return for the six-month follow-up, but he did answer the questionnaire for the one-year follow-up, and consistently returned monthly log sheets. He was quite consistent in following the protocol, particularly the diet, radial appliance, colonics, and Atomidine. He initially had a substantial improvement, but later in the project had a major setback, possibly stress-related. His initial score on the CFS symptom list was 42; at the one-year follow-up it was 28, a 14-point improvement. On the summary questionnaire he rated his fatigue symptoms as "About the same." His other symptoms were "Worse," but his attitudes/emotions were "Improved." He reported his degree of disability from CFS as "About the same." He was not taking any medication at the one-year point.
Regarding Atomidine, W. M noted "I believe I had a reaction that I caught on to, hot flushes, sort of fever; this month lower dose, much better." This sort of reaction, and increased heart rate, is not uncommon with Atomidine.
CFS3 added the following comments at the one-year point: "I have to be more consistent with diet, water drinking. I have to 'relax' while doing the therapies as I'm keen to get 'better'…so my mental attitude must change … sort of 'lighten up.' The colonics would have helped more as would have more massages – it was hard to get good people here for these."
CFS4 is a 56-year-old woman from the mid-Atlantic region, who described her occupation as "on sick leave." She had chronic fatigue for 2 years. She reported little improvement after six months, but moderate improvement after one year, with moderate compliance with the protocol.
In the initial questionnaire, she wrote that her symptoms began in November, 1995, "after being bitten by a very sick cockatiel, went into severe pneumonia and left with CFS (chronic fatigue syndrome)." Her symptoms included: "very weak, no stamina, joint pain, sore throat, sleep disturbances, low grade fever, severe sweating within 3 minutes of doing something, can’t focus, dizzy, confusion." She also reported high blood pressure, high cholesterol, hiatal hernia, diverticulosis/IBS, carpal tunnel both hands, lump removal left breast (benign), bunionectomy, and total hysterectomy.
She was on the following medications: Zocor (2 years), Zantac (3 years), Zestril (4 years), Paxil (3 years), and Advil (2 every 4 to 6 hours). She has not received any other treatment for chronic fatigue.
Her other health practices included walking, some stretching, and meditation. She noted "I have gained weight (30 lbs – a lot) since ill. I’m so weary feeling so weak."
CFS4 returned at the six-month follow-up, and reported little improvement in her symptoms at that time.
At the one year follow-up, CFS4 reported that her fatigue symptoms had "Improved," and that her symptoms other than fatigue "Improved if I follow the diet, about the same if I don’t." Her attitudes and emotions were "Much improved." She reported her degree of disability from CFS as "Less disabling." She also reported that she had decreased her medications. Her initial score on the CFS symptom list was 67; at the six-month follow-up it was 64, only a 3-point improvement. At the one-year follow-up, however, it was 33, a 34-point improvement.
CFS4 only complied moderately with the protocol. In particular, she only occasionally followed the diet, and did not have massages or colonics. She was fairly consistent using Atomidine and the radial appliance.
CFS4 added the following comments at the one-year follow-up: "I really think the protocols are on target, though sometimes time consuming, which can be hard on the slow moving days, as I include meditation, breathwork and stretches. I pray often for contributors’ gifts to sustain and broaden your experiments. I’m so thankful for the opportunity to be a part of it."
CFS5 is a 37-year-old woman from the mid-Atlantic region, who listed her occupation as "none – had to quit due to illness." Her chronic fatigue symptoms began one year earlier. She did not follow any elements of the protocol, and showed no improvement in her symptoms after both six months and one year. She did, however, report an improvement in her attitudes and emotions from participating.
On the initial questionnaire she described her symptoms: "chronic fatigue (complete lack of energy), feeling completely exhausted after sleeping, low grade fevers, joint and muscle pain, big problem with memory, inability to do things in my head (such as math), in its worst phase I get extreme vertigo, asthma, numbness of the hands and legs (goes away when I get chiropractic treatments – which I can no longer afford), and problems with my eustachian tubes." She also noted that she had her gall bladder removed, and dated the beginning of the chronic fatigue to that operation.
She had the following additional comments: "My chronic fatigue is inconsistent – as soon as I think I have arranged my life to accommodate some sense of stability with this disease I get hit with a bad case of it which usually leaves me bedridden. I have had major success in getting rid of accompanying problems/symptoms with weekly chiropractic care…very good impact on my energy levels. I have heard that 4 weeks of Reiki treatment has led to remission of the disease, but I could not afford that. I have had certain successes with different things, but was unable to afford to continue to do them. I had NO successes when I was working and trying to cure the disease. I have become very sensitive to poorly ventilated places. Before I got this disease, I pushed myself to the max (being a single parent and totally financially responsible for my son), and had frequent sinus and respiratory infections. Right before I got it, I had to have my gall bladder removed…the CFS when I could not regain my strength after the operation."
She was on the following medications, primarily for her asthma: Entax LA, Proventil, Servent, and Aleve as needed for pain, headaches and fever. Previously she had tried Prozac, Zoloft, and Paxil, as well as Atomidine. She has also tried Reiki (excellent but expensive), and added, "Healthy eating when I can afford it, All Tech Super Blue Green algae when I can afford it, castor oil packs when it doesn’t inconvenience the people I’m living with and I have privacy, Arise and Shine internal cleanse program (when I can afford it).
CFS5 returned for the six-month follow-up, and reported a small amount of improvement. It was clear during the meals that she was not following the diet. She also answered the questionnaire for the one-year follow-up. She had done essentially none of the protocol since the initial conference. Her initial score on the CFS symptom list was 62; at the one-year follow-up it was 61, only a 1-point improvement. On the summary questionnaire she rated her fatigue symptoms as "Worse." Her other symptoms were also "Worse," but her attitudes/emotions were "Improved." She reported her disability from CFS as "About the same."
In noting that she did not use Atomidine, she wrote, "I am now allergic to Atomidine (pretty sure)."
In response to the question about attitudes and emotions, she commented: "Even though I haven’t been able to do much for my body, my mind and spirit have been a fortress for getting through it, and being able to deal with it."
CFS5 added the following comments to her one-year follow-up: "Practical application. I know that the Cayce diet works to alleviate many of the CFS problems I have, but I could only afford to buy that food for one month. My health increased dramatically after the initial detox that month, but my budget couldn’t sustain it. Need some type of easy planner/scheduler for food, because if a CFS person has to think about it, it usually won’t get done. The biggest problem is the energy necessary to prepare food. By the time you’ve fixed everything, you’re too tired to eat it." She provided some suggestions for a system to help with shopping for and preparing Cayce foods.
She also noted, "Next to diet, chiropractic is the most important part of the regime. Unfortunately I can only afford one treatment a month at this time. Massages and colonics are a big help, too, but I can’t afford either."
CFS6 is a 39-year-old woman from the Southwest, a registered nurse. She had had chronic fatigue for about 3 years. It began following an infection from swallowing salt water during a swim. She followed very little of the protocol, and did not attend the 6-month follow-up. She reported no improvement on the one-year follow-up.
Her symptoms included severe: fatigue, muscle aches, joint pains, digestive/intestinal, allergies, cognitive, memory, concentration problems, fever, stress, and sleep disorder.
She had been on a large variety of medicines, but wrote: "At present time I have stopped all medications and therapies except when my insomnia is so bad I take Klonopin and when allergies are so bad I take an antihistamine." She had been on: Interferon, DHEA, Carafate, Depakote, Wellbutrin, Amitriptaline, Effexor, Rowasa, Antihistamines, Decongestants, Klonopin, Darvocet, Flexeril, Dlaman, Ultra Clear, and all types of vitamin and nutritional therapies. She has also used chiropractic adjustments, a CFIDS support group, psychotherapy, meditation, and prayer and study.
She added, "I am embarrassed to say or ask for financial assistance. However, I have been severely disabled with this medical problem since 1/94. I have lost my job, but have received (thanks to God) social security benefits – that barely pay my essentials. I have always been productive and really want to return to work. I will commit to this program 100% and give it my all to get well – and give you the feedback to help others." This comment is relevant since she was able to follow few of the therapeutic recommendations. It highlights the difficulty with chronic fatigue, that doing anything at all, including lengthy investment in therapies, is extremely difficult.
CFS6 did not return for the 6 month follow-up or submit monthly log sheets. She did return the one-year follow-up questionnaire. Except for massage, which she had most weeks, and Atomidine, which she used once a month, she did not follow the protocol. In particular, she did not do the diet. Her initial score on the CFS symptom list was 57.5; at the one-year follow-up it was 56, only a 1-point improvement. On the summary questionnaire she rated her fatigue symptoms as "About the same." Her other symptoms were also "About the same," and her attitudes/emotions were "About the same." She reported her degree of disability from CFS as "about the same." She had no further comments.