This file was copied from the USA CFIDS/CFS BBS in Augusta, Maine USA, the most comprehensive source of CFS information in electronic form. The BBS is available from noon to midnight Eastern time each day at telephone 1-207-623-8486 and is operated by John Kossowan, D.D.S. The periodical CFIDS TREATMENT NEWS is issued about twice each year and is available from the address cited at the end of this file. When the CFIDS Foundation director was asked what the price of an annual subscription is for this periodical, the reply was: "Any donation". ---------------------------------------------------------------- TREAT2.TXT ---------- THE CHRONIC FATIGUE IMMUNE DYSFUNCTION SYNDROME FOUNDATION CFIDS TREATMENT NEWS VOL.3 NO.1 SPRING 1992 FOUNDATION OFFERS TREATMENT PROTOCOL The CFIDS Foundation has developed the following Treatment Protocol to guide healthcare providers and people with CFIDS in exploring treatment options. This protocol was developed by a committee of physicians -- from the San Francisco Department of Public Health, Kaiser Permanente, University of California San Francisco Medical Center, San Francisco General Hospital, and California State Department of Health Prevention -- and was chaired by family practitioner Dr.Jonathan Rest. This protocol is offered for guidance only and will be modified as new research and other clinical information provides better data. These treatments should be pursued only under a healthcare provider's supervision. Treatment for CFIDS must be individualized, based on each patient's symptoms and response. To begin with, several general principles apply: - Many persons with CFIDS appear to be very sensitive to drugs; paradoxical reactions are common. Dosages are often started at 1/2 or 1/4 the usual adult dose. - Timing of treatments, dosage ranges, and duration of treatment need to be tailored to each patient's needs. - The addition of each new treatment may worsen symptoms. Because this worsening is often transient, it is important to give each new therapy a chance to work. - The health care provider and the patients should set realistic goals for the patient; OVERACTIVITY almost always brings a flare up of symptoms. - As in other chronic, difficult to treat illnesses, the relationship between the healthcare provider and the patient is likely to be a long term, demanding and time consuming one. - Attention to diet can significantly improve the symptom picture. Patients should pay attention to individual food sentivities, such as alcohol. - The healthcare provider should not be fooled by the patients appearance: people who have CFIDS are usually sicker than they appear. - There is a paucity of PROVEN treatments specifically for CFIDS and its symptoms. The following guidelines represent a consensus among clinicians involved in the care of CFIDS patients. There is as yet only a minimal research base to support much of this. I. Treatments known to be effective with other disease processes : SLEEP DISORDERS: Treatments of sleep disturbance is key, as all of the other symptoms will flare up as the quality of sleep is poor. - Clonzepam (Klonopin) 0.25 - 2.0 mg by mouth every night at bedtime (has habit forming potential) - Cycocylobenzaprine (Flexeril) 10 - 20 mg at bedtime - Sedating antidepressants , especially doxepin (Sinequan) - Temazepam (Restoril), oxazepam (Serax), or other sedative hypnotics PAIN: Pain is an important clinical manifestation of CFIDS; it can be present in the form of myalgia, neuralgia, and/or arthralgia. In some cases it is quite severe. - Flexeril (see above) - Antidepressants, especially doxepin (Sinequan). Also note that antidepressants are often used in conjunction with sedative hypnotics and/or cycocyclobenzaprine (Flexeril) - Nonsteroidal anti-inflammatories LETHARGY: - Non-sedating antidepressants in low dosages, such as fluoxetine (Prozac) if tolerated -- start at 5 mg/day - See "Associated Autoimmune Disease" below. HEADACHE: Headache are frequently pressure-like and unusually severe: - Nonsteroidal anti-inflammatories such as dichloralphenazone (Midrin) 2 tabs by mouth as soon as headache appears, and one tab by mouth every hour up to 5/24 hours. - Acetazolamide (Diamox) 250-500 mg 1-4 times a day - Headaches may require stronger pain medication as needed. ALLERGY: Treatment of nasal symptoms may improve overall symptoms picture. - Cromolyn sodium MDI (Nasalcom) 2-4 times a day - Steroid nasal spray - Non-sedating antihistamines and H2 blockers such as rantidine (Zantac) ASSOCIATED AUTOIMMUNE DISEASES: - Thyroid hormone supplementation if autoimmune thyroiditis is present (low dose; don't suppress TSH out of normal range) II. TREATMENTS WHICH MAY BE EFFECTIVE BUT LACK ADEQUATE CONTROLLED TRIALS PAIN: - Coenzyme Q-10 (a mitochondrial coenzyme utilized in ATP production available in health food stores): 90 - 120 mg/day COGNITIVE DYSFUNCTION: - Clonazepam (Klonopin) 0.25 - 2.0 mg by mouth at bedtime - Nicardipine (Cardene) anecdotal success only GENERAL THERAPY: - Vitamin therapy utilizing a good multivitamin/mineral supplement containing additional magnesium and zinc, such as Optivites, at 4 - 6 a day. - High dose vitamin B-12 injections: Up to 3000 mcg twice a week; must be accompanied by multivitamin supplement (see above). - Magnesium: Magnesium sulfate 1 gram (2 ml) IM weekly for 6 weeks - Antiviral therapy: Acyclovir (Zovirax) can be effective if laboratory tests suggest acute or persistent infection or systemic infection, with certain viruses; evaluations of other antivirals are pending. - Immunoglobulin has been effective for many CFIDS patients, although in the literature its use remains controversial (Amer J. Med. 89: Nov 1990) IM: 2 - 4 cc / wk based on weight; IV: 5gm/wk x 6 - 12 weeks. - Ampligen may be promising. It is an immune-modulating antiviral drug currently in FDA approved, double-blind placebo controlled trials, but it is not yet available. Treatment involves weekly IV drug dosing. III. TREATMENTS WHICH ARE HIGHLY CONTROVERSIAL - Some CFIDS clinicians feel that CFIDS patients have significant enteric pathogens including fungal and parasitic organsisms. Treatments may include anti-parasitic and antifungal drugs. - Kutapressin (liver extract): Protocol available through Thomas Steinbach, M.D., Memorial City Medical Center, Houston, Texas. . . . . . . Here is the address to write to for the: "CFIDS Treatment News" The CFIDS Foundation 965 Mission Street, Suite 425 San Francisco, California 94103 phone #: 415-882-9986 . . . . . . . "The CFIDS Foundation is a non-profit organization founded in 1986 by a group of people with CFIDS. Funded in part by the San Francisco Department of Public Health, the San Francisco Foundation, and individual contributions, the CFIDS Foundation provides comprehensive information packets for people with CFIDS; daily telephone counseling and referral to knowledgeable physicians, support groups, disability lawyers, and other resources; periodic Treatment Newsletter with latest information on treatments being tried throughout the country,; training and materials for health professionals; patient advocacy and public policy developemnt; media coordination; and support for research." The CFIDS Foundation . . . . . . From Sysop: Please send to the CFIDS Foundation a generous contribution, if you can and get on their mailing list. Thanks. John --- end of document ---