California Capital CFIDS Association

E n l i g h t e n m e n t

N E W S L E T T E R

Volume 14, Issue 5

November, 2000 

 

 

 

 

CCCA News and Information

Upcoming CCCA Meetings

Sat. November 11, 1 - 3 PM Kevin Ottem

Wed. December 6, 6 - 7 PM "Newcomer/Share Meeting"

2001

Sat. January 13, 1 - 3 PM Speaker to be announced

Wed. February 7, 6 - 7 PM "Newcomer/Share Meeting"

Sat. March 10, 1 - 3 PM Speaker to be announced

Wed. April 4, 6 - 7 PM "Newcomer/Share Meeting"

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

Group Meetings are held at: MedClinic, 3rd fl. conference room, 3160 Folsom Blvd. (at Alhambra), Sacramento.

Next Speaker Meeting

This upcoming speaker meeting will feature a dynamic speaker. Kevin Ottem is the brother of one of our members who happens to also be a long time devotee of meditation and yoga. He is a cheerful and calm teacher and, due to his concern for his brother's troubles with CFIDS, is interested in how meditation and yoga can be used to improve the quality of life for those with this and other chronic illnesses. Hope you can join us for this speaker.

As always, we will also have group sharing afterwards where you can voice questions and concerns among your fellow PWCs. There is usually an answer to your question in the group somewhere, or someone who will benefit from your experiences with this illness and how you have been coping (or not coping!!). Come listen, learn, share, and support your fellow members!!

Next Newcomer/Share Meeting

We have been having good turnouts for our "other" meetings on the Wednesday evenings. These meetings are like the endings of the speaker meetings - we just share and support among ourselves. Sometimes people who are new to the illness come and share their concerns and other members are able to give them information and support as they negotiate the early stages of getting a diagnosis (seldom the same as the early stages of the illness!!). At other times we simply share our stories of coping or of medication helps or disasters and learn from each other with humor, kindness and compassion as we all travel our paths through this illness or ones like it. Sometimes a caregiver or two come as well, and they always learn something from the PWCs about both how much they are appreciated or how to help their loved one. So, if you can, come on out to the Wednesday meeting as well as the speaker meetings. Hope to see you soon!

 

Other Area Meetings

We offer this list just as a compilation of groups that some of the members have seen listed or gone to. For more information about any group, please call the contact person listed. We do not have more information, nor are we affiliated with any of the groups. This list is provided only as a convenience if you are looking for more information or need further support. If you know of a group that is not listed here that you think others might enjoy, please leave a message on the hotline and we will try to add it to the next newsletter.

Sacramento Valley CFIDS/FMS Support Group

Meets: 5777 Madison Avenue, Suite 180, Sacramento, CA 95841

1st Sunday of each month @ 2 pm.

Contact: Mike Reilly: (916) 334-3643

Sacramento Fibromyalgia Support Group

(main group, sponsored by the Arthritis Foundation)

Meets: UCD Cancer Center, 4501 X St. (45th and X St, off Stockton)

3rd Friday of the month, from 6pm to about 8:30.

Contact: Carol Maun (916) 362-5634

Sacramento Fibromyalgia Support Group, "Kaiser South"

Meets: at Kaiser South, 6600 Bruceville Rd. Sacramento, CA, MOB II Conference Room A

1st Sat. of the month, from 1pm to 3pm.

Contact: Tom (916) 453-8707 or Janine (916) 688-1697

suppport and sharing

Sacramento Fibromyalgia Support Group, "Roseville Main Library"

Meets: at the Roseville Main Library, 225 Taylor St., Roseville, CA

2nd Sat. of the month, from 12pm to 2pm

Contact: Dorothy Powell (916) 965-9235

support and sharing

Citrus Heights FM and CFIDS Support Group (also thru Arthritus Foundation)

Meets: at Dennyís Restaurant at Sunrise and Greenback

2nd Wed. and 4th Tues. @ 1 pm.

Contact: Vikki Super-Manns (916) 784-8491

support and sharing (buy your own lunch optional)

Fibromyalgia / Chronic Fatigue/ Chronic Pain and Arthritis Support Group

Meets: Maidu Community Center, Senior Meeting Room, 1550 Maidu Dr. Roseville

1st Tuesday @ 9:30 am to 11:30 am

Contact: Sue Alexander (916) 966-1287

Weekend Workshop Dec. 15-17

The Esalen Institute in Big Sur is offering a weekend workshop titled "Healing in Controversial Illnesses." The workshop will be presented by Fred Frieberg, Ph.D., a psychologist and Person With CFIDS who has published three books on CFS and FM (Coping with Chronic Fatigue Syndrome, Understanding Chronic Fatigue Syndrome, and A Clinician's Guide to Controversial Illnesses (due out Dec. 2000)). This interactive workshop will focus on effective coping strategies designed to enhance meaning, purpose and direction while living with CFS, FM and multiple chemical sensitivities. The very reasonable weekend workshop rates range from $230 to $485 including tuition, food and some type of lodging. For more information or reservations, call Esalen at (831) 667-3000 or email Dr. Friedberg at ffriedbe@ct1.nai.net.

January Meeting - video tape of Dr. Nancy Klimas

I am sending for a copy of a videotape of Dr. Klimas' talk in La Jolla, CA. She discusses epidemiology, viral reactivation and how the neuroendocrine, immune and central nervous systems are linked in CFS/CFIDS. Also discussed are the similarities and differences of CFS/CFIDS and FMS. Dr. Klimas talked about currently available therapies and those under study."

Last meeting Ė Biofeedback

We had a great time at our last speaker meeting. Sharon Stewart was a compassionate and interesting speaker who shared her model of how stress affects every aspect of health. She was knowledgeable about our various illnesses in the group (CFIDS, Fibromyalgia and others) and was able to talk about how biofeedback can be helpful in many situations, not just for pain reduction or symptom relief. She also demonstrated in a dramatic way how we could use simple stress-reducing techniques ourselves to help our physical wellness at any time. Thanks to her and to all of you who came out and made the meeting so supportive and interesting.

Information on the Web

Please be sure to visit the CCCA web site at http://www.skdesigns.com/ccca for links to CFIDS related websites. Please feel free to email us at ccca@skdesigns.com with any questions, comments, suggestions, or interesting link information. A source of additional information on the web is The CFIDS Association of America, Inc. at http://www.cfids.org.

Thanks to Our Members

I want to add a special note to thank those of you who have renewed your memberships recently, and a very special thank you to those who have sent a donation along with your membership! You truly make a difference to the organization. We are currently running about $300.00 a year in the hole. Thanks to generous donations of the past, we are still in the black, but at this rate, it won't last long! Please think about asking loved ones to donate to us as a gift to you for Christmas or birthday or just in your honor. Volunteers and their generous donations of time and supplies do almost all of what is done by this group, but we do need to pay for the paper, postage, phone messaging, and miscellaneous needs of getting the newsletters out. It is because you all care that we exist. Thank you for your monetary support so we can reach all those who need to know you care. Note: Is it time to renew? Your membership expiration date can be found on the mailing label after your name!

Winning SSDI While You Wait for an Appeal

Chronicfatique.about.com

(Reprinted from the Carousel Network, June 2000.)

The U.S. Social Security Administration (SSA) recently implemented a new policy which will have an important impact on people who have claims undergoing review by the Appeals Council (AC). On December 30, 1999, SSA announced that claims will be "processed and adjudicated without delay regardless of whether there is a prior claim pending at the AC."

What does this mean for you if you've applied or plan to apply for Social Security Disability benefits? You've always had the right to appeal the denial of a claim by an administrative law judge (ALJ). Then the Appeals Council would either decide your case itself or return it to the ALJ for further review. Most of the time, the Appeals Council simply upholds the ALJ's decision.

The problem is this: the Appeals Council has a backlog of at least 12-15 months. In the past, while you waited for all of this to happen, you still were not able to receive Social Security benefits or have access to Medicare.

The other alternative you had was to forgo an appeal and instead file a new application for disability benefits, with an onset date no earlier than the day after the ALJ's decision. If you thought you could do a better job of proving your case with a new doctor, attorney, or any new medical evidence, then this might have been the quickest route to benefits. However, then you would be giving up your right to benefits for the period prior to the new application.

In the past, if you had a claim pending at the Appeals Council, and you filed a subsequent claim (for the same disability), no action would be taken on the new claim. Since Social Security's "Emergency Message" #99147, the rules have changed. Now a subsequent claim will be processed and adjudicated even if there is a prior claim pending at the Appeals Council. So you may be able to win benefits under a new claim even before your appeal on the old one is heard. The new procedure includes claims that were filed before the new policy went into effect.

once you've filed a subsequent claim, if your new claim is denied at the initial level (as 75% of applications are), you may appeal the decision to the reconsideration level, and the claim will be processed normally. If you are denied again, you may appeal the determination to the hearing level; but at that stage, the request for a hearing on the new claim will be deferred until the AC completes its action on the prior claim.

If your subsequent application for disability benefits is approved, a favorable outcome may influence the AC's decision on the prior claim. Each case requires individual consideration of the facts presented. If the AC decides that the subsequent claim presents "new and material evidence that relates to the period on or before the date of the ALJ decision, "This evidence may be used in the AC's review of the prior claim.

What You Can Do

If you have a claim pending at the Appeals Council, and you are interested in filing a new application while you wait for the outcome, consider the following recommendations:

1. Find out whether you have worked long enough and recently enough to be eligible to file a new claim. You should be eligible to file a claim if it has been five year's or less since you last worked full time. Call SSA's toll-free number (800/772-1213) and ask for your "Date Last Insured." You must prove that you became disabled before that time.

2. Check the status of your pending claim to find out if there is likely to be a decision soon. If the AC makes a favorable decision on the prior claim, the new claim will not be processed anyway, so there may be little reason to go through the effort of filing a new application if you think your prior claim might be approved soon.

3. If you decide to file a new claim, try to retain a good attorney at the beginning of the process. Most attorneys work on a contingency basis (meaning you don't pay until you receive benefits), and some will take your case when you initially file your claim.

4. Make sure you have the support of your treating physician. You are unlikely to win benefits if your doctor does not believe you are unable to work.

5. Talk to your doctor about any additional medical tests you might have that would help document your disability. In order for SSA to approve your claim, you need to show evidence of a "medically determinable impairment.'' {601. Definition of medically determinable impairment. A "MEDICALLY DETERMINABLE PHYSICAL OR MENTAL IMPAIRMENT" is one that results from anatomical, physiological, or psychological abnormalities which are demonstrable by medically acceptable clinical and laboratory diagnostic techniques.}

6. Take a look at your medical records before filing your claim; you have a right to receive copies of your file. Make sure that there is appropriate documentation for your disability and that all of your records are available

For more information, contact the Social Security Administration or visit their web site at www.ssa.gov

Anesthesia and CFS

Marilyn Seskin, MD

(Reprinted from the Carousel Network, June 2000.)

The following is an answer to a question about anesthesia for shoulder surgery, but can be applied to any anesthetic:

I am an Anesthesiologist with CFIDS/FMS.

Anesthesia is not a big worry. Anesthesiologists are highly trained specialists and able to deal with all situations. They are trained to deal with emergencies. Most people with CFIDS/FMS have no more problems with anesthetics than the healthy population.

Just follow some simple suggestions.

Talk to your Anesthesiologist, tell her/him that you have your illness and it involves the nervous system, particularly the autonomic; and the immune system. Be sure to bring a list of your medications and herbal supplements. Tell him/her all your allergies to medications or latex and any unusual problems you've had with medications in the past. Stop your vitamin E at least 3 days prior as it may increase bleeding.

If they only want you to see the Anesthesiologist just prior to the surgery and you have a lot problems you want to call ahead and ask to speak with an Anesthesiologist the day before if the system makes this possible. Sometimes it doesn't due to cost saving.

I am assuming you are having general anesthesia. Modem anesthetic gas presents very little toxicity to the liver. Halothane (which can rarely cause liver problems) is used only for children.

Everyone's manifestation of the syndrome is different and you want to discuss your own particular problems individually, e.g. asthma, NMH, thyroid disease, other autoimmune diseases. If you are prone to rapid heart beats this should be discussed. Most of these issues would come up in the usual interview an Anesthesiologist would have with a patient.

If you have been supplementing as most of us have., magnesium is important as we are thought to be relatively low (this will not show up in the basic serum magnesium test) so be sure to take your magnesium regularly.

If you have Neurally Mediated Hypotension, tell her, as anesthetics vasodilate you and for shoulder surgery they sit you up so you may have a drop in blood pressure, therefore you need to be properly hydrated. Vasodilation is relevant to all anesthetics as this is a side effect.

If you have TMJ, tell her, so they will be extra gentle for the intubation.

It would be wise to avoid muscle relaxants that release histamine such as curare, atracurium, and probably wise to avoid succinylcholine.

If you are very sensitive to all medications, i.e. you just look at the bottle and it effects you, then mention that. Your Anesthesiologist will keep that in mind, but the decision on how much to give is based on the situation and hers/his evaluation of your needs. It's a moment to moment decision.

Avoidance of epinephrine is wise especially if you have mitral valve prolapse and get palpitations. Epinephrine is used in regional or local anesthesia. It is also used in the irrigation if you are having arthroscopic shoulder surgery. Otherwise epinephrine would only be used in life threatening situations.

Another thought that is only recent knowledge is that nightshade vegetables (tomatoes, white potatoes, peppers, eggplants, zucchini and tobacco) contain chemicals called solaneous alkaloids which the plant produces as a natural insecticide. These chemicals have the ability to prolong the action of muscle relaxants used in anesthesia (this is not to be confused with muscle relaxants like Flexoril, which is used for muscle spasms). So maybe you could avoid these for several days before the surgery. Don't worry too much about this as the effect is very small. What is interesting is that these nightshades are also known to increase pain in chronic pain conditions. It happens to me. I can't touch these vegetables without having serious burning for about four days. All problems can be dealt with. Communication is what is important.

Dr. Bell Documents Further Organic Abnormalities in CFIDS

Tests of orthostatic intolerance shed light on cause and severity of symptoms

by Joan S. Livingston

(Reprinted from the Massachusetts CFIDS Summer 2000 Update.)

When Dr. David S. Bell last addressed members of the Mass. CFIDS Association, he reported on a fairly astonishing finding: his discovery along with Syracuse endocrinologist Dr. David Streeten, that a majority of Bell's chronic fatigue syndrome patients had "extraordinarily" low circulating blood volume (a combination of plasma and the red blood cells via which the plasma delivers oxygen throughout the body). While his average patients ran about 70 percent of normal, several PWCs bad only half the blood volume of a healthy person, an amount so low that it would ordinarily cause shock and prove fatal in a car accident. (See Winter 1997-98 Update for details on that study.)

From pain to brain fog:

Bell hypothesized at that time that the low blood volume could help account for the prevalence of "orthostatic [standing] intolerance" (worsened symptoms - from pain to "brain fog") - among PWCs, because the limited amount of blood would tend to pool in the legs and feet - that common feeling of unbearable gravity and of wearing lead boots - with a corresponding drop in the amount of blood available to the brain. Other researchers' work has added to the evidence that this is a core problem in CFIDS, including reduced cerebral blood flow on SPECT scans, while some, like the Johns Hopkins group, have demonstrated neurally mediated hypotension on tilt-table testing (changes in posture).

Editor's note: We don't usually print such a long article as the following one, but it is so excellent and informative, I hope you will forgive us for devoting so much space to it. I think it covers a great many topics of interest, and Dr. Bell is a well-respected CFIDS researcher and practitioner. Enjoy!

Dr. Bell's Definition of "Fatigue"

Bell defines CFIDS symptoms as falling into four major clusters: so - called fatigue; neurological problems (balance, cognition, paresthesias, etc.); pain ("which can be anywhere - a lot of patients have skin pain, for example, and their doctor already thinks they're a fruitcake, so it's one of those so itís one of those symptoms the patient won't even mention to the doctor"); and multiple sensitivities.

In a disease whose formal name is (still) chronic fatigue syndrome, it's thought-provoking that Bell disdains the word "fatigue" as a "very inappropriate term for what patients experience. It's not really fatigue at all, which is defined as a normal recovery state from exertion, and that is precisely what does NOT happen in this illness. It's the limiting of activity that defines this illness. Anybody who works a 20-hour day will be fatigued, but they'll recover from it - it's not the same thing. A typical CFS patient might function on a minimal level (housework, minor errands) for a total of 3 or 4 hours a day. They may say they're fatigued, but what's really restricting their activity may be pain, like headache, tremulousness, or weakness - a sense that they are on the verge of collapse. That is not "fatigue" as we commonly think of it."

Back to the future:

When the renowned Lyndonville, NY, clinician and researcher returned to the Boston area this May, he had further research results to disclose regarding the implications of low circulating blood volume (but no answers yet - sorry - on how to fix the problems identified). Streeten and he had conducted tests of orthostatic intolerance (hypotension, tachycardia, and other inappropriate physiological responses to standing) in 20 of Bell's patients, simply by tracking their blood pressure and pulse while lying and then standing. Like the test in which they measured blood volume, the protocol for this one was simple, requiring no special equipment like tilt tables (except time, at 40 minutes per patient - try selling your HMO PCP on a 40-minute test, you're thinking? What if it provides the data Social Security needs to approve your disability application - maybe think again).

Who You Calling a Wimp?

Bell and other clinicians, including Dr. Nancy Klimas, have long commented on their patients' (reported and observed) intolerance to being in an upright position, while they may feel "pretty good" while, lying down. "When they get up," Bell said, "suddenly they have a lot of symptoms, so I suspected that what we call "fatigue" in chronic fatigue syndrome is really orthostatic intolerance. A patient might lie down for three hours and feel pretty okay, then get up for just 10 or 15 minutes before they're forced to he down again to restore some blood flow to the brain."

(Considering their blood volume and orthostatic intolerance, Bell's patients would be expected to have trouble during the 30-minute standing portion of his most recent testing. ["Fortunately, the nurse in our office, Paula, is very good about predicting when someone's about to go down - and obviously it's better to terminate the test than have patients hit the floor."] In addition, Bell stated, patients with CFIDS are widely assumed "to be "wimps" - they're lazy, they're malingerers, right? But they'd say, "I will push myself through this test, I can do it." They might be swaying in absolute agony, but they'd finish. The normal controls, by contrast, were the wimps! After 20 minutes or so, they'd say, "I'm exhausted. Can you bring me a chair?" Bell noted that his patients were presumably so used to "pushing to get something done that they often pushed themselves close to the point of passing out" - that the sensations they experienced during the test were nothing new to them.)

Hard data:

Consistent with Bell's long-held assumptions, virtually all of his patients (18 or 19 of 20) showed abnormalities when standing, bard data that could be helpful in diagnosis, that generally correlated with disease severity, and that could prove a powerful new tool in fighting for disability benefits. Quantifiable and reproducible, not subjective, not "of exclusion."

The new findings are particularly meaningful in bucking conventional notions of CFIDS as a disease of self-reported, possibly overstated symptoms. And no one, physician or Social Security judge, can reasonably provide an "AIYH" (all in your head) explanation to a patient with some of the specific physiological abnormalities itemized below, like a "pulse pressure" so low that no doctor can even read your pulse or dub as "within normal limits", a standing blood pressure so low it indicates a state of circulatory shock.

Physical Anomalies

As an introduction to his most recent findings, Bell shared his observations about the wealth of already-existing data on physical anomalies in CFIDS for those clinicians who have been willing to look and do more than a rote physical exam and standard blood test. "The abnormalities in this illness are numerous and quite striking," Dr. Bell observed. Even before the last few years' research began pinpointing increasingly more aberrations in virtually every body system, he says, "I was always quite annoyed when doctors would say you can't find anything wrong on laboratory evaluation or physical exam. It's just not true. Among other things, the immunological findings are very, very interesting." (A few of these, cited by Dr. Anthony Komaroff elsewhere in this issue: increased CD8+ activated T-cells [generally a sign of active viral infection], low Natural Killer Cell function, and elevated circulating immune complexes. Unfortunately, few doctors other than researchers are inclined to order up such esoterica as immune-system tests even when faced with a patient whose symptoms are as severe as those found in CFIDS.)

"It's always been said [and is the basis of the CDC research case definition, never intended for diagnosis] that this is an illness of exclusion, that everything else must be ruled out before the diagnosis of chronic fatigue syndrome can be made," Bell noted. "That is not true. The pattern of symptoms is unique; there is no other illness in general medical practice that looks like this one." At first, he observed, the fluctuating symptoms may be baffling to patient and doctor alike: "Not only do they fluctuate over the course of a single day, but also over the longer term. One week your sore throat is so bad you're about to have your tonsils out, then the next week your worst symptom is irritable bowel and you're off to see the gastroenterologist. It's only over a period of time that the characteristic pattern emerges and the diagnosis becomes evident."

Sleep dysfunction:

Another near-universal symptom is sleep dysfunction. "Sleep-lab studies in fibromyalgia and chronic fatigue syndrome show an amazing array of abnormal findings, Virtually everyone with these conditions has significant deviations from normal [in brain-wave activity, sleep stages] - although different laboratories interpret the sleep data differently. I had one patient who didn't sleep for three days, and the lab report came back reading 'NORMAL STUDY; patient did not sleep for three days."'

Another notable irregularity to test for is "brain fog," though that can be problematic (because most doctors don't have pre- and post-illness IQ scores to compare): "If you give patients a basic cognitive test, they usually do pretty well," Dr. Bell said. "More sophisticated tests will identify the cognitive problems specific to this illness. But on a simpler level, you can also give one cognitive test while the patient is lying down [enjoying maximum blood flow to the brain], and one while the patient is standing. The difference between the two scores is often extraordinary.

"When doctors say that the physical exam is normal, that's also inaccurate," Bell continued. "Virtually all patients will have abnormalities on physical exam" (lymph-node tenderness or swelling, flushing rash, abdominal pain, etc.), "but on average the patient will look pretty healthy. What the doctor is thinking is that the physical exam is not abnormal enough to explain why someone says they can be up only two hours a day. The degree of reported activity restriction is so dramatic physicians frequently just don't believe it's possible." But an understanding of low blood volume and severe orthostatic intolerance makes the degree of activity restriction more than "possible": it makes it hard to believe patients function as well as they do, because, as the data below suggest, many PWCs may function in a continuous state of hypotension, tachycardia, and/or other posture-related abnormalities.

The Five Basic Working Theories

Dr. Bell noted that five basic theories of the illness have been set forth over time and remain current subjects of research:

Consisting of the parasympathetic and sympathetic nervous systems, the autonomic nervous system or ANS is responsible for controlling involuntary bodily functions like breathing, pulse, and blood pressure, as well as the adrenal and other glands, among dozens of other functions. It's the reason you keep breathing while asleep and your heart keeps pumping, as well as why your system goes into overdrive and why you sweat more when you're nervous.

The ANS is the root of orthostatic problems, and the inappropriate release of many chemicals, that may explain a range of CFIDS symptoms. (For a full description of the parasympathetic and sympathetic nervous systems, see a good medical dictionary, like Taber's. The Update has also touched on ANS abnormalities in its coverage not only of Dr. Bell but also of Dr. Klimas's lectures [Fall 1999 and Spring 1997] and of Dr. Hugh Caulkins [Spring 1998].)

Feigning irritation with this kaleidoscope of changing theories, Bell said, "As a clinician, you don't usually have to read much to keep up with what's going on." (His was a pediatric practice in a rural community before a CFIDS cluster epidemic struck young and old there in the 1980s.) "Sore throats haven't changed in 20 years. You give baby shots, that kind of thing."

With the Lyndonville outbreak, he suddenly had more on his mind than baby shots. "With the first two theories, I had to learn about all the intricacies of the immune system, about cytokines, about Natural Killer Cells, the workings of one pathogen after the next. [Not that these earlier theories have been abandoned; just that abnormalities in other body systems continue to be discovered and plumbed.] As soon as I had the immune system pretty well mastered, no one seemed to be talking about it anymore; people were talking about mitochondrial function [having to do with the production of energy at the cellular level]. So I read up on all that and now we're not talking about mitochondria much anymore."

"Most recently the emphasis has been on the autonomic nervous system, which absolutely nobody understands.'' In this Bell is being a little disingenuous, as he has been one of the pioneers in researching the role of ANS dysfunction in this illness.

A Word About Depression

"There is one piece of good news in this list of five theories, and that's the fact that you don't see psychiatric disease there. That theory has largely fallen out of favor. Psychiatric illness is serious and devastating, but there's very effective treatment for it; by contrast, there is still no good treatment for chronic fatigue syndrome."

"Having said that, I want to emphasize that, at some point in their disease, many CFS patients will become depressed. At least 60 percent of my patients have had periods of severe depression. This can take the form of despair that is truly life-threatening, and there may come a time for any individual patient when there is a role for counseling in their lives. I would hope everyone would be open to this when feelings of despair become overwhelming, and recognize that seeking help does not mean their disease is primarily psychological, but instead that counseling can play a valuable role in coping with any chronic physical illness."

Decrease In Circulating Blood Volume

Eighty percent, or the vast majority, of the patients in Bell and Streeten's first study (of 19 patients, vs. the 20 in the more recent study) had a "marked, striking" decrease in circulating blood volume. "One nice thing about that finding," said wryly, "is that it is a discrete physiological abnormality that cannot possibly be explained as psychosomatic." How severe were the abnormalities? As mentioned before, the average was 70 percent of normal; still, "we have six people with only 50 percent of normal blood volume and yet they're still walking around. It seems to be a different mechanism than what happens to a healthy person [who loses that much blood] in a car accident."

In fact, the blood vessels in CFIDS seem to be constricted dramatically, and yet attempts to restore normal volume (through Florinef, salt, saline injections, transfusions) have met with only very limited success so far. "All of the body's normal mechanisms to restore blood [when it's lost in other ways] seem to be turned off. It's as if the CFIDS body wants to have low blood volume and that its blood vessels want to stay constricted. Bell likens the blood vessels to furnace pipes that are only half the proper diameter - and you simply can't make a metal pipe hold more fluid than the pipe is built to carry.

"When you tell people about these findings, their immediate question is, "What happened to the blood? Where did it go?" The answer is we don't know. It's not like patients bled out or are dehydrated - although they do experience a lot of thirst." Turning to the audience, Dr. Bell noted that his patients carry "buckets of fluid" with them at all times - an observation made by other clinicians. "How many people here also have excessive thirst? Whoa - look at all those hands!" (And all those bottles of Poland Spring ...) It's as though some rudimentary alert system is crying out for more fluid, but because of the vasoconstriction, it just gets flushed away.

Straight off the Presses: The Latest Findings

Bell and Streeten obtained their most recent and detailed findings about ANS dysfunction in Bell's patients through "a very simple test, one that can be performed anywhere, using only a blood-pressure cuff" - much like the "poor man's tilt-table test" ("but I would argue more accurate because it reproduces exactly what happens to a patient waiting in the checkout line at the supermarket"). The patient lies down quietly for 10 minutes while a nurse takes his or her pulse and blood pressure (BP) several times, then the patient is asked to stand quietly for 30 minutes while the same measurements are taken.

The following objective abnormalities - and the number of patients who actually passed out while standing - are compelling evidence for a disability case, Bell noted. "Bank tellers will stand on their feet for 8 hours a day without much discomfort, and this test will show definitively why a CFS patient may not be able to do that for 30 minutes. You can hand this data to a disability judge and say, "Obviously this patient can't work as a bank teller."

The context:

To put the study's findings in context, a quick review of normal pulses and blood pressures is desirable (the following values are drawn from Dr. Streeten's book on orthostatic intolerance).

Bell noted that when a normal person stands up, the pulse may or may not rise slightly; the blood pressure usually remains stable (a graph of the systolic and diastolic numbers is notable for its constancy - a "band" that stays the same size); and the pulse pressure - the difference between the systolic reading and the diastolic reading - remains constant (understandably, since the difference between the two numbers that compose the BP remains steady).

Findings and five subgroups:

The normal baselines just outlined proved to be significantly different from the five basic patterns or subgroups Bell found in his study, despite the fact that his patients' pulses and BPs were generally "pretty normal" while lying down.

Abnormalities in ANS function documented in virtually all of Bell's patients - some of whom had multiple, severe abnormalities were - as follows:

1. Orthostatic systolic hypotension: a fall in systolic (upper) BP of 20 mmHg (millimeters of mercury) or more. As with the other abnormalities, presumably a desperate attempt to boost blood circulation to the brain (this phenomenon like all the five abnormalities, is probably most obvious to laymen with #4, increased pulse).

2. Orthostatic diastolic hypotension: a fall in diastolic (lower) BP of 10 mmHg or more. ("This seems to be the least common abnormality in the CFS patients I have tested. The body will put out adrenaline and other chemicals as a result of decreased blood circulation, which narrows the blood vessels further.")

3. Orthostatic diastolic hypertension: a rise in diastolic BP to 98 mmHg or more. ("The lower number of the BP often reflects systemic resistance, and while standing many CFS patients seem to "raise" this lower number up in an attempt to push blood to the brain.")

4. Orthostatic postural tachycardia: an increase in heart rate of 28 beats per minute (bpm) OR a pulse of more than 110-120 bpm. ("A healthy person's pulse will not change even if they stand up for an hour, You need a steady pulse to circulate blood.") (Some of us don't remember the last time we had a "normal" pulse.)

5. Orthostatic narrowing of pulse pressure a fall in pulse pressure - the difference between systolic and diastolic - to 18 mmHg or lower (vs. the 40-point difference in our hypothetical example of 120/80).

"Usually, when the pulse pressure falls much below 20, you can't even read the person's pulse. When it falls this low, the patient is in a state of circulatory shock." This abnormality is especially dramatic when depicted graphically, as on Bell's slides - the normal constant band between systolic and diastolic narrows to the point that the two numbers are almost indistinguishable, the space between them is so thin.

Case Study

In his Mass. CFIDS lecture, Dr. Bell presented case examples, with details and supporting slides, for each of the five abnormalities listed above. (Because of the level of detail, our lack of the graphics that would make the abnormalities 'Jump off the page," and the fact that many patients had multiple irregularities, we will cover just one case study here.)

The example is of the first abnormality listed - orthostatic systolic hypotension - although the woman tested actually had several of the five abnormalities, falling into more than one subgroup. As background, she was one of Bell's patients with only 50 percent of normal circulating blood volume.

Her resting BP was actually a little higher than normal, at 160/100. As soon as she stood up, however, it dropped to 90/0 (1), before flattening out at 70/60, the 10-point pulse pressure that signifies "it's basically impossible to read a pulse" - even without her other anomalies. At that pulse pressure and that BP she was in a shock state, and could no longer remain standing. In the meanwhile, her resting pulse had jumped from 80 to 120 as her ANS attempted to get blood to the brain.

Her physiological abnormalities, in review, included systolic hypotension (dBP=70), a dramatic drop to zero in her diastolic reading immediately upon standing with a later rise to 60, a narrowing of pulse pressure (to 10), and a rise in pulse to the tachycardia figure of 120 - a BP too low and a P too high to circulate blood at all.

Another drop to "zero":

In the most recent edition of his publication, The Lyndonville News (CFS-DSB@juno.com), Bell wrote briefly about another woman with systolic hypotension: "One patient I follow had a normal BP lying down (100/60) but it fell to 60/0 [sounds like systolic AND diastolic hypotension to us] on standing. No wonder she was unable to stand up - a blood pressure that low is really unable to circulate blood. In any ICU they would panic seeing a blood pressure like that. And yet she was turned down for disability because she was considered a "hypochondriac."

These two examples are certainly sensational. And of the five slides Dr. Bell showed as examples of the five disparate patterns he and Streeten identified, he mentioned that three of his patients whose data he used to illustrate three other disorders also had tachycardia, so clearly some patients suffered from more than one form of orthostatic intolerance. Unfortunately, he did not enumerate precisely how many patients fit into each of the five subgroups or several, or whether the slides he showed were representative "of the whole study sample or were chosen because they illustrated the most severe abnormalities. Nonetheless, this was an initial study and we can probably expect more results and more details down the line.

Some chemicals behind BP and P and 01, an area for future research:

Among the chemicals released by the ANS are cortisol, dopamine, epinephrine (adrenaline), and norepinephrine (chemically very similar to epinephrine but with somewhat less direct effect on the heart). Dr. Bell concluded his lecture by noting that these chemicals probably play a role in CFIDS - especially when released inappropriately, causing further vasoconstriction in those furnace pipes.

He favorably cited a recent article regarding norepinephrine released by the adrenal gland (many PWCs have long felt that the adrenal gland plays some central role in their illness, whether from underactivity, from long-term overuse, or from releasing too much adrenaline, leaving them with that frazzled, revving-on-empty feeling).

In the study Bell cited, researchers performed measurements of norepinephrine on a couple of known sufferers from orthostatic intolerance (as the result of a rare genetic defect), both while the subjects were prone and while they were recumbent. The (twin) subjects, who suffered from symptoms like rapid pulse, difficulty breathing, cognitive difficulties, and fainting spells, had excessive blood levels of norepinephrine while standing - but their symptoms were suggestive both of too much norepinephrine and of too little. "It could be," Bell said, "that a physiological mishandling of norepinephrine ("norepinephrine transport) - for different reasons in CFIDS than in this exceedingly rare genetic condition - plays a role in both conditions."

Testing for "hyperadrenergic" (norepinephrine-related) orthostatic problems is likely to prove a useful tool in the future, Bell predicted. "Norepinephrine is the best method the body has for getting blood to the brain, to get that mental clarity of the fight-or-flight response," he noted. "But in CFIDS it seems to get kicked in inappropriately. Half the patients I've tested have an abnormality on testing. I think we'll soon see testing of such things as plasma norepinephrine when patients are experiencing orthostatic symptoms. It's good for getting blood to the brain but it's counterproductive in CFIDS it probably causes further vasoconstriction, it raises pulse. It causes panicky symptoms and makes you feel tremulous, it causes exhaustion and forgetfulness, and it can cause poor sleep later." (Sound familiar?)

(Speaking of chemicals, Bell added, in regard to CFIDS pain, that PWCs might suffer from an inadequate supply of endorphins, the body's natural opiates: "Though there's no good research on this, there's a fellow in our area who's a superb acupuncturist, and what he's been doing with my patients has been knocking my socks off," Bell related. "I think that somehow acupuncture may have a relationship to the autonomic nervous system and centrally mediated pain.")

While Bell and Streeten appear to have provided further insights into many of the body's different responses to low circulating blood volume, especially blood to the brain, there are no answers yet about how best to treat the five subgroups (and members of multiple subgroups) they identified. Perhaps one will turn out to comprise the "Florinef responders." In the past Bell has seemed bedeviled by the fact that the drug works so well for some PWCs but not others (relatively few of his own patients have shown improvement on it).

While there is still nothing as simple as a swab strep-throat culture for diagnosing CFIDS, the subgrouping may be a step in that direction, as well as toward determining the optimum treatment for each subgroup. "The reason I'm excited about this [most recent study] is that it provides a method to subgroup patients and perhaps to find the different mechanisms behind each abnormality," Bell said. With these mechanisms more fully understood, there should be advances in which therapies to use and which really work over time. And the simple orthostatic testing should provide more reliable data on treatment responses than patients' comments on how they feel, since symptoms remit and relapse over time.

(Update Editor's note: See Dr Bell's recently published article entitled, 'The roles of orthostatic hypotension, orthostatic tachycardia, and subnormal erythrocyte volume in the pathogenesis of the chronic fatigue syndrome." (authors: Streeten DH, Thomas D, Bell DS) Am J Medical Science 2000 Jul;320(1):1-8.