Volume 19 Fall 2000

1. Cognitive Behavioural Therapy, Fact and Fiction
2. Dr. Bell Finds Organic Abnormalites in CFIDS
3. Isoprinosine® Study
4. Turn Back the Clock!
5. Who's in Charge:  You or Your DEBTS?
6. Lecture, Workshop & Private Yoga sessions for M.E. & FM Patients featuring Dr. Bruce Carruthers

Cognitive Behavioural Therapy, Fact and Fiction
by Dr. Larry L. Waterman, Registered Psychologist

I have had a number of clients over the past several years come to my office asking for Cognitive-Behavioural Therapy (CBT). When I talk to them, they seem to have the belief that CBT contains some kind of Magical Response which will help them overcome the difficulties that they are experiencing. While I truly wish with all my heart that this were true, I am afraid this is one of the myths associated with CBT.

It is true that CBT is the most common and effective psychotherapy available in the world today for most problems. There are specific therapeutic techniques that may be more effective in certain cases.  Overall however, CBT has consistently been shown in the literature and research to be the most effective method of dealing with a person's emotional difficulties. Because emotional difficulties always accompany ME/CFS, it is no wonder that many individuals suffering from this disability are becoming increasingly familiar with CBT.

Albert Ellis developed the precursor of CBT which is called Rational-Emotive Therapy. This theory states that many of the difficulties that people experience are a result of irrational beliefs about themselves which gradually come to control their behaviour.

What is CBT? The goal of Cognitive-Behavioural Therapy is to help individuals modify both their thoughts and their behaviours to produce a positive outcome. Some would argue that a more precise definition would be that CBT helps people to alter the way they think about themselves and their world, and this leads to a change in the way they behave.

Much of the credit goes to Ellis and his Rational-Emotional therapy model for recognizing that what individuals think will result in certain behaviours and thoughts about themselves. For example, if you believe that you are stupid and are not able to succeed at anything, there is an extremely high probability that you will experience consistent failure, which, of course, reinforces the belief and leads to stronger feelings of despair. However, if you believe that you are capable of taking effective action in a situation, it gives you a much stronger position from which to act and be successful. This is not to say that CBT is simple and easy. Unfortunately, individuals come into therapy wanting to change and then proceed to do everything possible to make sure that change does not take place. This is the process of therapy and it is up to the skill of the therapist to help guide the individual through his or her self-defeating thoughts and behaviours.

CBT helps clients identify their self-defeating thoughts about themselves and their world. By identifying how the clients' perceptions are influencing their behaviour, individuals can begin to make changes both in the way they think about themselves and in the way that they behave. For example, in dealing with a phobia, the therapist may help the individual to learn positive reactions such as relaxation while gradually introducing increasingly disturbing stimuli, both through the use of imagination and sometimes real situations.

Can CBT solve all of your problems? Definitely not. However, in my opinion, when used appropriately in conjunction with a skilled therapist and a motivated client, it is one of the best means of helping an individual make effective changes in his or her life. Like almost everything else in this life, what you put into your therapy will, to a large extent, determine what you get out of it.

Dr. Bell Finds Organic Abnormalities in CFIDS
by Joan S. Livingston, About.com Columnist

Note: If you would like to read this article in its entirety, you can look it up on-line at:
http://chronicfatigue.about.com/health/chronicfatigue/library/weekly/aa072600a.htm

CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) sufferers can celebrate yet more concrete evidence that what they suffer from is not "all in your head (AIYH)," but rather "all in your body (AIYB)", but, given the nature of the evidence, they'll probably want to celebrate in bed. The findings come from a new study by Dr. David S. Bell of Lyndonville, NY. Lyndonville was the site of a major CFIDS cluster epidemic in the 1980's that morphed Bell from a rural pediatrician into a world-renowned CFIDS researcher, as he sought to understand what was happening to his patients.

Bell's last major study, with endocrinologist Dr. David Streeten, yielded a startling discovery: that the vast majority of Bell's CFIDS 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 patients with Chronic Fatigue Syndrome (PWCs) had 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 (as apparently happened to Princess Diana during a 2 1/2-hour drive to a French hospital).

Bell hypothesized that the low blood volume could help account for the prevalence of orthostatic intolerance (worsened symptoms upon standing) in CFIDS, because the limited amount of blood tended to pool in the legs and feet, with a corresponding drop in the amount available to the brain. The result? That common sensation of overwhelming gravity and of wearing lead boots. Other research has added to the mounting evidence that this is a core problem in CFIDS, including reduced cerebral blood flow on SPECT scans and neurally-mediated hypotension on tilt-table tests.

DATA FOR DIAGNOSIS AND DISABILITY

Dr. Bell has completed further research on some specific physical ramifications of low circulating blood volume. He and Streeten conducted tests on Bell's patients by tracking their blood pressure and pulse while lying and then standing. Consistent with Bell's long-held assumptions, virtually all of his patients (18 or 19 of 20) exhibited aberrations when upright.  This is hard data that could be helpful in diagnosis and ultimately treatment, that generally correlates with disease severity, and that could prove very valuable in fighting for disability benefits.

The new findings could be pivotal in bucking conventional notions of CFIDS as a disease of subjective, "self-reported", and possibly overstated symptoms. No physician or Social Security judge can reasonably stick a psychiatric or hypochondriac label on a patient with some of the abnormalities outlined below.

As background 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 a standard blood count. "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." Sleep-lab studies and tests of cognition are generally quite unusual, he noted, if performed properly

"It's always been said 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. When doctors say that the physical exam is normal, that's also inaccurate," Bell continued. "Virtually all patients will have abnormalities on physical exam, 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 understanding low blood volume and severe orthostatic intolerance makes the degree of activity restriction more than "possible." In fact, 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, including circulatory shock.

ONE POSSIBLE ETIOLOGY:  THE ANS GONE MIA

Dr. Bell noted that one theory of CFIDS etiology receiving increasing attention is autonomic nervous system injury or dysfunction. 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 and your heart keeps pumping while you're asleep, as well as why your system goes into overdrive and why you sweat more when you're nervous. The ANS is the home of orthostatic problems, and of many chemicals, that may explain a range of CFIDS symptoms.

A clear majority of the patients in Bell and Streeten's first study had a "marked, striking" decrease in circulating blood volume. "One nice thing about that finding," Bell said wryly, "is that it is a discrete physiological abnormality that cannot possibly be explained as psychosomatic." How severe were the irregularities? The percentages varied (70% of normal volume was average); still, "we have six people with only 50% of normal blood volume here who'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."

For some reason, the blood vessels in CFIDS seem to be constricted dramatically, and attempts to restore normal volume (through fluids, Florinef, salt, saline injections, transfusions) have met with very limited and short- term 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.

Bell and Streeten obtained their most recent, detailed findings about ANS dysfunction through "a very simple test, one that can be performed anywhere, using only a blood-pressure cuff." 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.

Bell pointed out that when a normal person stands up, the pulse may or may not rise slightly at first; the blood pressure usually remains stable and the pulse pressure remains constant.

Despite the fact that their pulses and BPs were "pretty normal" while lying down, study participants consistently displayed orthostatic irregularities, last-ditch efforts to force blood to the brain.

Bell wrote briefly about a woman with systolic hypotension: "One patient had a normal BP lying down (100/60) but it fell to 60/0 on standing. No wonder she was unable to remain upright, 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." Her case was not unusual in Bell's study or in his clinical practice.

Isoprinosine® Study

At the Immunology 2000 Conference held in Seattle during May 2000, an evaluation of Isoprinosine® was presented by Dr. Ashok Kumar of the Children's Hospital of Eastern Ontario.

Chronic Fatigue syndrome (CFS) is associated with several immune abnormalities. In this trial, the effect of drug treatment on various immune functions in 16 CFS patients diagnosed according to the Center for Disease Control definition of CFS was assessed.

The patients were followed for a total of 28 weeks. CFS patients at baseline compared to normal controls exhibited a significantly decreased NK (Natural Killer) cell activity.

Clinical improvement was observed in 6 out of 10 patients (60%). The clinically improved patients showed a significantly enhanced NK activity, which correlated with the duration of treatment.

A significant increase in IL-12 production by T cell mitogen was also observed in clinically improved patients.

The results of this trial suggest the safety and efficacy of Isoprinosine® and its potential to enhance NK cell activity. In view of the small number of patients, further studies are required to investigate the contribution of Isoprinosine®-mediated immune effects to the pathogenesis of CFS.

Turn Back the Clock!
by Tim Louis, Barrister & Solicitor, Tim Louis and Company

Our legal columnist Tim Louis will be providing a regular column in "ME & You".

He is a founding member of the BC Coalition of People with Disabilities, and has been a lawyer since 1984. Tim was elected to Vancouver City Council in 1999, and is Chairperson for Vancouver City Savings Community Foundation.

Many times over the last fifteen years, when meeting with clients who have been denied long term disability benefits by their insurance company, I have wished I could turn back the clock. Between the time when they were first denied benefits and their appointment with me, much time and many decisions had been taken. If only the client had seen me in the first few days after the original denial. Here are just two examples of where my advice early on would have resulted in a speedier resolution of the claim in my client?s favour.

MORE INFORMATION

Quite frequently the insurance company makes the original denial appear much less negative by combining it with a simple request for additional information. The unsuspecting claimant goes about obtaining the additional information, more often than not at considerable time and expense, only to wait an unacceptable length of time for a response from the insurance company, which, when it finally arrives, is not positive but is a follow-up request for further information. On and on the process goes with each information request cycle consuming many months of time, during which the claimant remains without the benefits to which he or she is entitled. In my office I always file a Writ in court immediately upon being retained and follow up with the insurance company's requests for further information afterwards. This sends a very clear message to the insurance company that we mean business. More importantly, it begins a process which results in a trial date being assigned which brings pressure on the insurance company. Suddenly, the tables are turned and delay no longer benefits the insurance company.

ACTIVITY REPORTS

Very few doctors or lawyers, other than those familiar with ME and FM, are aware that most patients experience great variations from one day to the next in how they feel and in what they can do; that activity one day may result in "crashing" the next few days; and that a good day may seem like a "gift from the gods" to be taken full advantage of. Along comes the insurance company with a questionnaire to be completed regarding activities you are able and/or have done in the last year. No request is made for how often and with what consistency you were able to do these activities. Can you vacuum? You answer yes. Can you mow the lawn? You answer yes. Can you sit at a keyboard and work at your computer? You answer yes. And on and on the questions go. By the end of the form, you appear to be much more capable than you really are. The last time you were capable of vacuuming may have been months ago, but the form didn't ask for comment on frequency or how long ago you did the task. The same goes for the lawn and the keyboard. In my office, I don't let my clients complete the form if it will misrepresent their situation. Instead, the client and I provide full and complete answers to the questions including frequency and impact on my client of engaging in the activity (eg. "crashing".)

So, if you have been denied disability benefits by your insurance company, see a lawyer sooner rather than later as proceeding on your own may harm and add unnecessary delay to your claim.

Who's in Charge:  You or Your DEBTS?
by Margaret H. Johnson, Credit Counsellor

Margaret Johnson has 25 years experience in the financial industry. You may contact her at ACESolutions Credit Counselling Service Inc., #200 - 10351 -150th St., Surrey, BC  V3R 4B1 (604) 588-9491 mhjohnson@telus.net

The number of bankruptcies in Canada, an indicator of economic distress, is once again rising, suggesting some deterioration in economic fortunes. There were over 88,000 consumer bankruptcies in 1998.

In recent years the credit industry has seen its profit margin shrinking due to losses suffered in part from high risk lending practices, while the bankruptcy and insolvency industry has experienced growth that has surpassed the early 1980's. There are economic and emotional costs associated with bankruptcies for both creditors and debtors i.e. reduced assets, lower self-esteem, and reduced creditor confidence, to name just a few. Like all economic events, bankruptcies do not occur in a vacuum. In order to provide alternatives for the consumer, more education is being presented.

Credit counselling is a much-needed service to assist consumers with credit education. In many cases, a lack of knowledge is the essential factor in why people suffer from financial problems. People with financial problems tend to see themselves as having lesser value as a person. Why is that? Could it be that the credit industry, aligned with the marketing industry, has made us believe that self-esteem is measured by money, by how we pay our bills? Money is not an indication of your value as a person, it is an indication of your circumstances at a particular time in your life. Credit Counselling is not about money, it is about PEOPLE.

People experiencing financial difficulties need objective, unbiased, neutral information when it comes to money and credit, as well as cost-effective alternatives to help resolve their financial problems. They also need to be aware of what their rights are as they pertain to credit and collections.

If you are having problems paying your creditors, here are some things you should consider:

• Call your creditors, let them know what is happening. They cannot help you if they are unaware of your circumstances.
• Ask that interest charges be stopped on your account for a time, so that you can catch up on your payments.
• Ask that your account not be placed in the hands of a collection agency so that you may deal directly with your creditor.
• Always get the name of the person you speak to.
• Always keep a record of the date, time, and a brief explanation of the conversation each time you speak to any creditor or collector.
• Keep in touch with the person you talk with until the problem is solved.
• Avoid making promises you cannot keep.
• Stop using credit.
• Develop a budget. Track your spending. Where is your money going? Do you know?
• Always be polite, no matter what is said. If the collector is rude, ask to speak to his or her manager.

Remember, you have all the control. No one can make you do anything you do not want to. You are in control of the call, even when you do not feel that you are.

You have rights. If you feel that you are being harassed by a creditor or a collection agency, call the Debtors Assistance Branch at 660-3550 to make a report.

If you choose to write a letter, outline the following:

• Your reason for the letter
• Your employment status
• Your intentions regarding the debt (remember, putting it in writing makes it binding)
• Your reduced repayment terms
• Your condition as to why you cannot make the payment
• Your request for interest relief
• Your request for the creditor to pull the account back from collections
• Your offer on a settlement amount
• Your request for the termination of the debt (medical reasons)

Provide proof. Photocopy pay stubs etc. Remember, you are letting the creditor know where you work, or, at the very least, what you earn.

Create a monthly expense sheet (show creditors where your money is going). Be accurate, it's your budget.

Be realistic. If you offer to make a payment make sure you can afford it. Missing a payment could jeopardize your proposal.

If you cannot stick to an arrangement do not offer one.

Be reasonable. Creditors want to be paid back within a reasonable amount of time.

Be specific. Tell creditors when you will contact them in the future. Tell them which month or which specific day. Do not give them the idea you are not going to follow up with you letter. Do what you say you will.

At the top right hand corner of your letter put the heading WITHOUT PREDJUDICE. This way your letter will always remain your property.

If you are still having problems, contact a credit counsellor that provides ongoing support, not just debt pooling. Your credit counsellor will be able to guide you thorough any problems you are having. Remember, you have all the control – do not sign or agree to anything until you have spoken to an UNBIASED credit counsellor who is there to support you and not the creditor.

One last note, if any of you have payroll loans (they have a wage assignment attachment to them) this can be CANCELLED under the Employment Standards Act. Contact a credit counsellor or Debtors' Assistance for the information.

Lecture, Workshop & Private Yoga Sessions for M.E. & FM Patients
featuring Dr. Bruce Carruthers

November 4, 5, & 6, 2000
The Yoga Space
#202 - 1715 Cook St.
Vancouver
Preregistration required
Send cheques to:
Heather Graham
#301 - 610 - 3rd Avenue
New Westminster   V3M 1N5

November 4, 2000 7:00pm - 9:00pm:  Lecture and question period with Dr. Bruce Carruthers, M.D.

Topic:  New ideas regarding M.E., and the intrusion of M.E. into the personal lifeworld of each patient and how to counteract this.

Cost:  $10.00; or $5.00 if attending the workshop

November 5, 2000 10:00am - noon & 2:00pm - 5:00pm:

Reducing fatigue through the use of restorative yoga postures – an individualized approach with Maureen Carruthers and Heather Graham.

Cost:  $70.00 Includes free one-on-one testing of cognitive fatigueing with Dr. Bruce Carruthers.

November 6, 2000    10:00am - 1:00pm:

Private sessions with Maureen and Heather, to be arranged individually.

Cost:  $80.00 Includes free cognitive testing with Dr. Bruce Carruthers.

For information call Heather at (604) 515-9209