CCCA Newsletter, May 2002 vol 16, issue 2

Newcomer/Share Meetings are held at: Lyon Real Estate 1^st floor Board Room at Lyon Village, 2580 Fair Oaks Blvd. Sacramento.

Newcomer/Share Meetings are held at: Lyon Real Estate 1st floor Board Room at Lyon Village, 2580 Fair Oaks Blvd. Sacramento. Speaker / Presentation Meetings are held at: MedClinic, 3rd fl. conference room, 3160 Folsom Blvd. (at Alhambra), Sacramento. These meetings typically feature a live speaker or a group viewing of a video, as well as open discussion.

The May meeting will be an extra special one. We are happy to be showing the "new" video made by Kim A. Snyder. It explores living with CFIDS, as did her first one we showed a few meetings ago, but in a different way. She has won critical acclaim for this documentary. Rather than go on, I will include in this newsletter a review by none other than Roger Ebert. (See following article.). Then come see the film on May 11th -- only a day before National CFIDS Awareness Day -- and enjoy the support of your fellow PWC-ers. Hope to see you there!

Featuring: Kim A. Snyder, Michelle Akers, Blake Edwards and Stephen Paganetti. A documentary written and directed by Kim A. Snyder. No MPAA rating (unobjectionable for all). Running time: 74 minutes.

I now believe in Chronic Fatigue Syndrome. I was one of many who somehow absorbed the notion that it was an imaginary illness. I am ashamed of myself. At the Hamptons Film Festival, I met Kim A. Snyder, who was working as an assistant producer on a Jodie Foster film when she contracted CFS in 1995. For the last five years, while still battling the disease, she directed "I Remember Me,' a documentary which does what the Centers for Disease Control in Atlanta shamefully failed to do: connects the dots.

Snyder begins in Lake Tahoe, where the disease struck hundreds of people. She talks to Dr. Daniel L. Peterson, who first started treating CFS patients there in 1984, has had seven who committed suicide because of the disease, and has no doubt it is real. She also talks to a spokesperson for the nearby Incline Village Visitors' Bureau, who says CFS is promoted by "quack doctors and mostly overweight women." This person succeeds in becoming the living embodiment of the real estate brokers in "Jaws," who don't want anyone to believe there's a shark.

Yes, Dr. Petersen sighs, investigators from the CDC in Atlanta looked into the Lake Tahoe outbreak: "They came out here and skied and looked at a few charts." The conclusion was that Chronic Fatigue Syndrome was psychosomatic, or hysterical, or misdiagnosed. We are reminded that until the 1950s, multiple sclerosis was also considered a hysterical condition.

Snyder is an investigative journalist who does her own detective work. She identifies many earlier outbreaks with the same symptoms as CFS and goes to Punta Gorda, Fla., to visit five women who had the disease 40 years ago. Investigators visiting their community at the time concluded it was a real disease and not an imaginary condition, and said so in a report--which the women never saw. Snyder shows one woman the report on

camera. She expresses her anger; this report would have informed her she was not, as many assured her, going crazy.

Snyder interviews two famous CFS sufferers: the film director Blake Edwards, who has continued to work during remissions in a 15-year struggle with the disease, and the Olympic gold medalist soccer player Michelle Akers, who walked off a field one day and collapsed. But Snyder's most touching the depressing visit is to the bedside of Stephen Paganetti, a high school senior in Connecticut. He has been on his back in bed for years. The slightest exercise exhausts him. He is fed through tubes. Determined to attend his high school graduation, he's taken there by ambulance and wheeled in on a gurney. Few of his classmates had come to see him imprisoned in his bedroom; one says "you get better--and we'll talk!" They give him a quilt they have all contributed patches to. Just what a high school kid wants for his graduation.

By the end of filming, Stephen is still suffering, and indeed less than 20 percent of CFS sufferers get better, Snyder says. The disease strikes as many women as HIV. There has been recent progress. Robert J. Suhadolnik, a biochemist at Temple University, has identified a blood enzyme that acts as a marker of CFS, after many doctors claimed it had no physical symptoms. A whistle blower at the Centers for Disease Control has revealed to government accountants that 13 million was illegally diverted from CFS study to other diseases. Yet TV comics still joke about the disease as a form of laziness. Ironic, isn't it, that Kim Snyder wasn't too lazy to make this film--while the CDC and the medical establishment are only now stirring into action.

Note: For more on Paganetti's story, visit www.cfids-rne.org/cfscc/bass0498.html

We received the following in an email addressed to our group. Anyone who would like to help Peggy Meunch with her project is invited to write to her by snail mail or email as follows in her request. Hope it is rewarding for all involved.

"Hello. My name is Peggy Muench. I currently reside in Provo, UT, and I am attending the doctoral program in Counseling Psychology at BYU. I am also a nurse. Over the years, I have developed increased interest in studying the mind-body-spirit connection and chronic illness (probably because I have experienced a variety of chronic illnesses, including FMS and CFIDS). I am currently actively engaged in the writing of my dissertation and I am looking for individuals who would be willing to participate in my study.

Research materials will be mailed (through "snail mail") and should take about 30 minutes to take. I need to obtain about 300 responses to provide for a "respectable" research study. I intend to mail out the surveys in June of this year. Any assistance that you could provide in passing the word along about my study would be greatly appreciated.

The only requirement for participants is a medical diagnosis of fibromyalgia or chronic fatigue immune dysfunction syndrome.

Individuals can respond to me through e-mail or "snail mail". Your mailing address will be protected (and not passed on to anybody else). My e-mail address is as follows: pegymuench@aol.com and snail mail Peggy Muench 612 West 1925 North Provo,UT 84604. In appreciation, Peggy Muench."

May 12th is National CFIDS AWARENESS Day
We have not planned a group activity, but encourage you to make a it a point to bring CFIDS up to at least one "new" person and spread your understanding, information and story in support of all of us. I hope to have a few letters to Congress, supplied by the Nat'l CFIDS group, at our May meeting for those interested to sign and send.

You might notice a small name change in the newsletter.... from Speaker Meeting to Presentation Meeting. I am sure you have noticed that we have been showing videos for several meetings. The reason is two-fold. One, these are wonderful videos for and about CFIDs and/or Fibromyalgia. There is so much information I would love to share with you all and videos help to make it possible. I am glad to present these at the meetings, and will continue to look for good ones for us to share.

Secondly, for a while there was such a low turn-out at the presentation meetings that I did not want to ask speakers to come address us when there might only be six or seven people. While this is a fine number for sharing and support, it is sometimes not enough of an audience to ask someone to take up their Saturday to come address us.

I hope to do more publicizing of our meetings throughout the Metro area this year, both to increase the help we can give to those who may not have heard of us and to hopefully increase the number of members who are able to make it to the meetings. This is in NO WAY intended to make you feel guilty for not coming to the meetings!! If you can make it, great! If not, thank you for supporting the group and I hope the newsletter is always informative and supportive for you. I am only trying to explain the reason why we have not had "real" speakers for a while. I hope to find someone FABULOUS for the September meeting! (Reminder: there is no group meeting in July, but do try to come to the "share" meetings in June and August! We'll be there!)

While I am addressing you, I would like to again send a big, huge THANK YOU to those of you who were able to make contributions above your membership cost. We are very much in need of these "extra" funds. Our costs for printing, postage, and the hotline have risen since the membership charge was last set. (And postage costs are going up again in June!) As well, we have been enjoying a bit of a cushion from a very generous donation a few years ago, but that is about depleted. Therefore, it will be necessary to raise the cost of membership back up to $15 dollars a year beginning in January - so if your time is near then, renew before then for a "bargain"! (...and add a donation if you can! Even that raise does not cover the five newsletters and the hotline completely.) Again, many thanks to all of you for your interest and support in this group, it is really, truly a group effort supported by us all to help each other through this difficult and distressing illness.

Also, I would like to send another special thank you to Peter, Kim, Bill and Dave for their volunteering to do so many of the small and large tasks needed to keep it all running!! For those of you who knew him, Bob Paugh recently moved to Tucson, and we wish him well there. Bill Sullivan took over his "job" answering the hotline messages and gets a huge thank you for doing that on top of beginning his own telephone-line services business. Kim has been a godsend for many years, doing the newsletter and mailing list and much of the web site and other computer duties. She may be moving in the near future and so Peter has taken over many of these tasks, including being our wonderful web master. David T. has been helpful in many ways and we thank him for his contributions. Please send them extra blessings! And if you have the energy to offer twenty minutes or an hour a week to help with things, let us know! You can send in the last page or leave a message on the hotline number on the front of this newsletter.

Well, enough of me for now! There is good stuff in this newsletter and I/we all hope you/we all enjoy it! Blessings to you all and hope to see you at the meetings. –Julie

Originally published in Youth Allied By CFIDS, Summer 1996
Applicable to adults as well as kids with CFS/FM

Some persons with CFIDS (PWCS) are hypersomnolent, sleeping 12-14 hours nightly and still dozing off during the day. But the vast majority of PWCs have difficulty initiating and maintaining sleep (DIMS). I suspect that hypersomnolence is one way the body “shuts down” to promote recovery, as hypersomnolence usually occurs at the onset of illness and with some relapses.

DIMS, on the other hand, frequently occurs with relapses or with overexertion. Patients say that they are exhausted, but their brains are wide awake and they are unable to fall asleep - a phenomenon that I describe as “tired but wired.” Most patients report vivid or nightmarish dreams and many are kept awake by jerking of the limbs (nocturnal myoclonus), restless legs or pain. Universally my patients complain of unrefreshing sleep and a morning phenomenon called “dysania.” This is a period lasting 1-2 hours after awakening during which time the patient is almost too exhausted to drag out of bed, achy and stiff in the joints and mentally foggy.

Restful sleep is key to improvement in CFIDS. Anyone who tosses and turns all night could expect to awaken tired, irritable, achy and sore.

Treatment of sleep disruption begins with good sleep habits: when possible, choose a regular bedtime; avoid caffeine, exertion and other stimulation for an hour or more before bedtime; and use the bed for sleeping only - not reading, TV or homework! If you have trouble falling asleep or find yourself wide awake during the middle of the night, get up. Go to an easy chair or couch and do something quiet like reading, listening to the radio or watching television. Once you feel sleepy again, return to bed. If you awaken briefly but frequently during the night, consider using a red night light, as regular white light has a tendency to awaken us.

Sleep is so important that I do not hesitate to use medication if necessary. I generally start simply, recommending over-the-counter treatments such as the herb valerian (500-750mg nightly), a mild antihistamine like Benedryl (25-50mg), Tylenol PM or Excedrin PM.

If these don't help, I suggest melatonin, the natural brain hormone that induces restfulness in sleep in normal individuals. Natural melatonin levels tend to be low anyway in persons with chronic illnesses. Melatonin supplements should be taken about one-half hour before bedtime. The dose is very individualized; start with a small dose of 0.1 mg to 1.0 mg nightly (depending on what is available) and increase the dose until some success is achieved. The maximum dose is 3 mg in young people, 6 mg for those over 50 and never more than 9 mg. Excessive doses may cause jitteriness or headache. Always use synthetic (that is, not from animal sources) and sublingual (under the tongue) forms of melatonin for best results and safety.

The next step in sleep management is prescription medication. I have had the best success with low doses of the antidepressant doxepin (1 mg to 20 mg, typically 10 mg) plus the Valium-like drug, Klonopin at 0.5 to 1 mg nightly. Klonopin is rapid-acting and helps you to fall asleep, while doxepin keeps you asleep. The next choice is trazadone (50 mg nightly), an antidepressant that increases the depth and quality of sleep. Next I would try Ambien (5-10 mg nightly), which is a uniquely structured sleep drug that is only mildly habituating and does not seem to loose effectiveness over time. Other options include Ativan, Xanax, Valium, Halcion, Doral, Prosom, Restoril and others, but these tend to habituate and adapt (wear off) after time.

More important than medications, PWCs should strive to go with the flow or accommodate their own body rhythm. Studies of cortisol production in PWCS suggest that the natural body rhythm (or diurnal cycle) is shifted several hours to the right. That is, if you were used to falling asleep at 10:00 pm, your body might now feel more comfortable nodding off at 1:00 or 2:00 am. Similarly, if you toss and turn all night, or if you are up for an hour or two, it is best to sleep in the next day until you feel somewhat rested. When this shifted body rhythm interferes with work, school or social activities, however, I highly recommend using melatonin to trigger your nighttime body rhythm cycle, then upon awakening opening all the blinds and curtains so that you get plenty of light exposure for 2-3 hours each morning. In darker Northern climates it may be necessary to invest in a light box to accomplish this. Occasionally there will be periods when the PWC just can’t sleep at all days. In such cases it is best to nap and catch up whenever possible, but I will occasionally prescribe powerful soporifics such as chloral hydrate or short-acting barbiturates. When used for short periods of time, these generally induce a reasonable sleep and re-establish a more normal sleep cycle.

Should You Quit Taking Kava? Something else to worry about: liver toxicity reports on herbal supplement

Jan. 29, 2002 -- Do you take kava? If so, you may want to take a break. Because some European countries have pulled kava from the shelves after reports of possible liver damage, the FDA is investigating whether kava is a health risk.

The FDA has sent out letters to physicians asking them to review all cases of liver toxicity to determine if any may be related to the use of kava-containing dietary supplements.

“Products containing herbal extracts of kava have been implicated in cases of severe liver toxicity in Germany and Switzerland,” says the FDA letter. “Approximately 25 reports of [liver] toxicity associated with the use of products containing kava extracts have been reported in these countries. Serious adverse effects include hepatitis, cirrhosis, and liver failure. At least one patient required a liver transplant.”

In both Switzerland and Germany, regulatory agencies have prohibited the sale of kava extract-containing products.

The FDA is investigating whether the use of kava- containing dietary supplements poses a similar health hazard in the U.S., according to the letter. The agency has received several reports of serious injury allegedly associated with the use of kava-containing dietary supplements.

A leading U.S. toxicologist is analyzing the German and Swiss reports for the American Botanical Council and several other industry organizations, says Mark Blumenthal, the council’s executive director. The American Botanical Council is a nonprofit herbal research and education organization. Because there is no Freedom of Information Act in Europe, access to the specific case reports will be limited, he tells WebMD.

What he knows thus far: “In 18 of the European cases, people were also taking — along with the kava -- prescription or over-The-counter drugs that were Known to possibly cause liver toxicity. Whether the liver toxicity was related to those drugs, or kava alone, or a combination, may or may not be able to be determined.”

In some cases, people were reportedly taking excessive amounts of kava. Also, a history of alcohol use was noted in some cases, Blumenthal tells WebMD.

Autopsy for one reported death showed liver failure before kava was even ingested, he says. Despite all the controversy and unanswered questions, things may be easing up in Europe. A news report yesterday said that Germany’s regulatory agency has approved prescription drug status for kava -- that hasn’t been confirmed, Blumenthal says.

“We’re advising that certainly the reports from Europe shouldn’t be discounted,” says Wayne Silverman, PhD, the American Botanical Council’s chief administrative officer. “However, there are some mitigating circumstances that make some reports questionable.”
The bottom line: “The same kinds of cautions that come with any kind of prescription drug or herbal remedy should apply here,” Silverman tells WebMD. “You should consult with a health practitioner. You should be aware of cautionary statements about that supplement.”

Roberta Lee, MD, is medical director of the Center for Health and Healing at Beth Israel Medical Center in New York. She has been practicing integrative medicine since 1995 and has lived as a public health physician in the Polynesian islands, where kava is taken on a daily basis. She is in the fifth year of a project involving interviews with traditional healers in Polynesia.

In Micronesian cultures, many people dunk fresh kava daily -- but they use water to dilute it, Lee tells WebMD. The process of extracting kava lactones and blending them in a concentration with other ingredients may change the way it affects the body, she says.

“I’ve never witnessed any evidence of liver toxicity in Micronesia - and that is a population that drinks alcohol,” says Lee.

She considers kava supplements to be safe, but patients must tell their healthcare providers they are taking it. Patients should tell their physicians if they have any history of liver problems or suspect they have liver problems.

o       anyone with a predisposition to liver disease,
o       either because they have hepatitis or some other liver dysfunction
o       anyone who is taking drugs with known
o       adverse effects on the liver — like methotrexate for arthritis and statin drugs for cholesterol
o       anyone who regularly consumes alcohol

If you want to take kava, get your liver function tested on a regular basis, says Lee. “If you’re really worried, after two weeks’ use, have a blood test for liver function, then have blood tests on a monthly basis. Patients should tell the doctor whether they’re feeling terrible, fatigued, notice a dark color in the urine — those can be warning signs for jaundice.”

“Kava as an indication for anxiety is still a valid therapy,” says Silverman. “But some people with other medical conditions should be wary.”

Pfizer Inc. announced that on March 1, 2002, it will offer a discount card to low-income Medicare patients. The card program, available for use in outpatient purchases of prescription drugs made by Pfizer, will cap the price for these patients at $15 per prescription. Pfizer is one of the world’s biggest drug manufacturers, making such well-known drugs as Viagra, Lipitor, and Zoloft. One drug that will not be covered under this card program is the arthritis drug Celebrex, which Pfizer co-markets with Pharmacia Corp.

Pfizer estimates that, based on the average cost of $65 for a 30 day supply of their drugs, the card program will save low-income Medicare recipients about $50 a month. “This is not,” says Pfizer senior vice president of planning and business development Peter Brandt, ‘a money-making proposition.” He went on to say, however, that Pfizer’s double-digit percentage earnings growth forecasted for future years remains unchanged and will not be impacted by this card program.

Brandt expressed his hope that most chain pharmacies and independent drugstores will honor the card, noting that CVS Corp and Wal-Mart Stores, Inc. have already agreed to participate.

To be eligible for card program, the Medicare recipient must not be covered under any other program that provides prescription drug coverage and must have an annual gross income of less than $18,000 for people filing individual tax returns, or less than $24,000 for couples filing joint returns.

Pfizer estimates that some 7 million, out of the current 40 million Medicare patients, will be eligible for the card program.

Prior to September 11, Congress had been discussing adding prescription drugs to Medicare benefits. In the wake of 9/11, discussions other than those related to how much farther funds can be stripped from Social Security and Medicare have generally come to a halt. Pfizer isn’t the first to try to mitigate the negative press their high drug prices and lack of coverage has created in the United States. GlaxoSmithKline PLC, the London- based manufacturer of drugs including Paxil, Wellbutrin and Zyban, and Swiss-based Novartis AG, maker of drugs including Deseril and Famvir, launched their own discount card programs. Both programs are for low-income Medicare patients without other drug coverage, offering discounts of between 25-40%. While the income levels under the Glaxo and Novartis programs are higher than those for Pfizer, it is unclear whether these two programs will be extended to those of us under age 65 who are on Medicare due to disability. Regardless, experts feel that even with the discounts being offered by these drug giants, the cost of the prescriptions will remain out of reach for many of those eligible for the plans.

In a study published in the Journal of the American Medical Association, researchers conducted a phone survey of prescription arid over-the-counter (OTC) drug purchases from February 1998 through December 1999. Their findings raised concerns about the potential for harmful interactions in those patients taking more than one drug, whether prescription, OTC, herbal, and/or and dietary supplements. White these concerns are not new, this study found that the use of prescription and QTC drugs and herbal/dietary supplements has increased, with patients mixing herbs and dietary supplements with prescription and OTC drugs without being aware of harmful and other consequences.

From the abstract: “Among 2590 participants aged at least 18 years, 81% used at least 1 medication in the preceding week; 50% took at least 1 prescription drug; and 7% took 5 or more. The highest overall prevalence of medication use was among women aged at least 65 years, of whom 12% took at least 10 medications and 23% took at least 5 prescription drugs. Herbals/supplements were taken by 14% of the population. Among prescription drug users, 16% also took an herbal/supplement; the rate of concurrent use was highest for fluoxetine users, at 22%. Reasons for drug use varied widely, with hypertension and headache mentioned most often (9% for each). Vitamins! minerals were frequently used for nonspecific reasons such as “health” (35%); herbals/supplements were also most commonly used for “health” (16%).”

The most commonly taken herbal supplements were ginseng, ginko biloba, garlic, glucosamine and St. John’s Wort, taken to treat or mitigate conditions ranging from fatigue to depression. The most commonly taken OTC products were pain relievers including acetaminophen, ibuprofen and aspirin.

Women aged 65 and older were most likely to use medications of any kind. Men between the ages of 18-44 were least likely to be on any medication. The most common drugs used by women were thyroid and conjugated estrogens, white cardiovascular medications and diuretics were most often taken by men.

Thyroid Need-To-Know: If you are taking medication for thyroid disease, here are some things you need to know...
Melissa Kaplan

Drug Interactions

Drugs can interfere with other drugs by blocking their action, or reducing their intended effect, or combine to cause other health problems, ranging from depression, GI symptoms, central nervous system disorders, and more. Be sure to inform your doctor about all the medicines you use (both prescription and nonprescription). As can be seen from the list below, there is a wide range of drugs and supplements that can interfere with your thyroid medication. Drug interactions and precautions fall into two main categories:

Drugs you should not take together but can take if they are separated by several hours
Drugs that, when taken during the same day, especially over a prolonged period of time, can cause health problems

If you are taking any of the following drugs or supplements, take them at least 4 hours apart from your thyroid medication:

Aluminum or calcium antacids
Calcium supplements
Iron supplements
Cholestyramine (Questran), colestipol (Colestid) and similar anti-chloresterol/bile acid drugs
Sucralfate (Carafate, Sulcrate) mucosal liners/anti-reflux
Sodium polystyrene sulfonate (antacids such as Amphogel, Di-Gel, Gaviscon, Gelusil, Maalox, Mylanta, Phillips, Riopan, Tums)

If you see more than one physician, be sure all of them are aware if you have been prescribed a thyroid medication and are also taking or have any of the following prescribed for you:

Amphetamines
Anticoagulants (blood thinners)
Appetite suppressants (diet pills)
Medicine for asthma or other breathing problems
Medicine for colds, sinus problems, or hay fever or other allergies (including nose drops or sprays)

Complicating Conditions

Other health problems may affected by thyroid disease or the use of thyroid hormones. Be sure to tell doctors treating you for any of the following conditions that you are being treated for thyroid disease

Diabetes mellitus (sugar diabetes)
Hardening of the arteries
Heart disease
High blood pressure
Overactive thyroid (history of)
Underactive adrenal gland
Underactive pituitary gland

For Women Only

Most women don’t know - and for some reason most doctors either don’t know or don’t bother to tell them - that hypothyroidism can cause or contribute to a host of “female” problems, including cessation of menses, abnormally short menstrual cycles (periods coming every 15 days or so), and cessation of ovulation. In addition, the thyroid hormones play a role in the libido and so should be looked at in addition to the “sex” hormones (androgen, DHEA, the estrogens, progesterone, testosterone, etc.) when exploring the loss of libido and apparent peri-menopause.

Overdose

As with any chemical, you can overdose. Symptoms of thyroid overdose can include diarrhea, irregular heartbeat, headache, tremors, nervousness, stomach cramps, fever, chest pain, or difficulty sleeping. If you suspect an overdose, contact your local poison control center or emergency room immediately.

There are two ways to overdose. Accidental overdoses can happen in one of two ways: you may forget you’ve already taken your medication, or your pharmacist dispensed a higher dosage tablet than the one ordered by your physician.

The second way to overdose is iatrogenic: the doctor prescribes too high a dose. Since many of the symptoms of overdose are the same as untreated or under-treated hypothyroidism, you may end up needing to see an endocrinologist if your internist or other prescribing physician is not responsive to your report of continuing or new symptoms.

Prescription Thyroid Drugs

The following drugs are prescribed in the US:

Armour Thyroid, Cytomel, Levo-T, Levothroid, Levothyroxine, Levoxyl, Liothyronine, Liotrix, Synthroid, Thyrar, Thyroid Strong, Thyroglobulin, Thyrolar, Triostat Westhroid. In Canada, Eltroxin*, PMS-Levothyroxine Sodium* are also available.

Foods That Interfere With Thyroid Medication & Function

The following foods bind iodine which in turn affects your thyroid function, whether or not you have thyroid disease. You can take your thyroid medicine at any time of the day or night - just be consistent with when you take it. If you take your thyroid medicine in the morning, you can easily separate these foods by several hours from your thyroid medication. As for quantities of these foods - go easy on them and vary the ones you eat, as they may have one or more and varying quantities of the several known goitrogenic phytochemicals.

Buckwheat, Cabbage, Collard, Fenugreek, Flax, Garden cress, Garden sorrel, Kale, Lentil, Linseed, Oats, Rye, Soybean (tofu, soymilk, etc.); Kelp, St Johns Wort.

One Doctor Speaks Out Against the ‘Morbid Fascination with Psychiatric Morbidity’ with Regard to Chronic Fatigue Syndrome and Fibromyalgia

Every so often there is an upsurge of debate about the place of psychological problems in regard to CFS, FM, and ME. As a psychiatrist who has been seeing patients with these illnesses since 1986, as well as following the literature closely, I have often been embarrassed by and angry at many of my colleagues who fall in line with self-declared "experts" who see somatization everywhere.

Ever since the mid-1980's, there have been "researchers" with an uncanny knack for cornering research funds because of their already-formed biases that are in synch with the biases of the funding government organizations, who declare CFS, FM, ME to have a psychological basis or, more recently and insidiously, avoiding specificity about etiology, indicate that CBT and graded exercise will do the therapeutic job, thus in part implying a major psychological causative factor.

I have noticed the following deficits in their work, their thinking, their word choices-or should I say-choice of terms, and their research methods:

1. They often fail to clearly distinguish between "chronic fatigue" and "chronic fatigue syndrome". The former is a common symptom in medical clinics that does have a high linkage to already-present psychological problems. The latter, as we know, is a fairly specific medical condition with an unfortunate name. Their sloppiness has led to all kinds of trouble and misunderstanding.

2. They fail to distinguish between pre-illness psychological functioning and post-onset occurrence of psychiatric symptoms which are both organic and understandably reactive in origin. This error would disappear if they did thorough psychiatric evaluations which included a careful review of past history and current functioning, i.e., where they really got to know their patients. Even medical students are taught how to do this. Their failure to do proper in-depth psychiatric evaluations in at least some of their studies is a serious error with drastic implications.

tests of psychological state which then lead to flawed, inappropriate, and superficial conclusions. Leonard Jason has discussed this problem in detail. Their use of large numbers of study subjects and sophisticated statistics give the impression that they are really scientific; in my view it is pseudo-science.

4. They often fail to include, or to be unaware of, the mounting medical-neurological-immunological evidence demonstrating the medical nature of CFS/FM/ME.

5. They demonstrate instead a morbid preoccupation with psychiatric morbidity. There are moderate and sometimes severe psychiatric conditions following onset, which as physicians and psychiatrists we need to be aware of, but there is no definitive and convincing evidence that I am aware of indicating psychological causation [of these devastating illnesses].

A Member of Congress needs your help with a Medicare issue! A Congressman is trying
to establish if Medicare is delaying payment of claims for CFIDS/FM patients in specific
areas of the country. He is trying to determine if this was a local or national issue. If you have
had difficulties with Medicare, please let us know. Contact Nova by e-mail at CSN@cfids.org ,
by phone at 704/364-0466 or by fax at 704/365-9755.

Short track speedskater, PWC and 2002 Winter Olympics competitor Amy Peterson has been making the media rounds lately talking about her battle with CFIDS. A now five-time Olympian, Peterson has been outspoken about her difficult comeback road following the onset of CFIDS five years ago. She has emphasized that she can barely get out of bed on some days, and that the illness has made her competition performance hit or miss.

Peterson’s teammates chose her to carry the U.S. flag into the Winter Olympics opening ceremony, which has gained her even more visibility. She was most recently interviewed on the TODAY show about the challenges that CFIDS has posed. For a transcript of the interview, visit The CFIDS Association of America’s web site at: http://www.cfids.org/resources/today-transcript.asp or call the Association’s Resource Line at 704-365-2343.

Please be sure to visit the CCCA web site at our web address - http://ottem.org/ccca - for links to CFIDS related websites. Please feel free to email us at CalCapitalCFIDS@bigfoot.org with any questions, comments, suggestions, or interesting link information.

Also, this newsletter will be posted to the above web site under Newsletters, and web addresses and e-mail addresses in this newsletter can be clicked (are hyperlinks) for your convenience.

A source of additional information on the web is The CFIDS Association of America, Inc. at http://www.cfids.org.

Note: Is it time to renew? Your membership expiration date can be found on the mailing label after your name!

	CCCA Calendar of Events
	*2002*
	Date and Time	Activity
	Sat. May 11, 1 - 3PM	Group Meeting
	Wed. June 5, 5:30-7PM	Newcomer/Share Meeting
	!!! July !!!	* summer vacation *
	Wed. August 7, 5:30-7PM	Newcomer/Share Meeting
	Sat. September 14, 1-3PM	Group Meeting
	Wed. October 2, 5:30-7PM	Newcomer/Share Meeting
	Sat. November 9, 1-3PM	Group Meeting
	Wed. December 4, 5:30-7PM	Newcomer/Share Meeting