Volume 18 Spring 2000

1. Dr Carruthers on CKNW
2. New Directors
3. Order of the Lieutenant Governor of B.C.
4. Letter to the Editor: Guaifenesin treatment
5. Dear ME & You:  the "Whey" to Better Health?
6. Dear ME & You: About the Tax Man
7. Physician's Column - ME and the Distrust of Experience
8. Chiari Spinal Surgery Prompts Serious Controversies
9. Dr. Stiver and Kenna Sleigh's Study
10. Message in a Bottle
11. Belgium Recognizing CFS

1. Dr Carruthers on CKNW

On May 12, ?ME Awareness Day?, Dr. Bruce Carruthers was featured on CKNW radio's afternoon program with Philip Till. He discussed the challenges that people with M.E. face, the misperceptions that the public has of this illness, and suggestions of how to modify your lifestyle if you have M.E. The response from listeners was overwhelming. Philip Till was astounded by the number of faxes and telephone calls, and, in particular, by how many years it had taken some people to be properly diagnosed. He extended another invitation to Dr. Carruthers to speak on his show.

2. New Directors

MEBC is very pleased to announce the addition of two new members to the Board of Directors.

Donna Mitchell is a Private Client Advisor with Phillips, Hager and North Investment Management Ltd.  Her background is in financial planning and sales management.  Donna was born and raised in Vancouver and now resides in New Westminster with her husband and two-year-old daughter.

MEBC is also pleased to announce the addition of Bev McLachlan to the Board of Directors. Bev comes to us from a background in Human Resources & Training.  She has her own company and is a seminar leader and motivational speaker.  Some of her unique and powerful education programs include: Advanced Business Communications, Power Communications, Effective Leadership, and Life Mastery.  As well, Bev provides Employee Assistance and Employee Programs.  You can visit her web site at www.Inigroup.com

3. Order of the Lieutenant Governor of B.C.

On May 4th, 2000, the Executive Council Chamber in Victoria issued a proclamation designating May 12, 2000 as M.E. Awareness Day and May 2000 as ME/CFS Awareness Month.  Signed by the Attorney General and Minister Responsible for Human Rights, this proclamation validates the various aspects that these illnesses present.  We have provided a copy for you to share with family members, doctors, etc. who may question the legitimacy of your disease.

4. Letter to the Editor: Guaifenesin treatment

Has anyone come across a book called: "What your doctor may NOT tell you about Fibromyalgia" by Paul St. Amand. The author appears to have found a solution to the problem by treating it with an over-the-counter drug called Guaifenesin. Guaifenesin is a constituent of cough syrup. The author of the book advises that the drug not be taken in this form but in tablet form.

Editor's note:  If anyone has heard of this treatment and knows of a doctor who follows the protocol listed in this book, please contact MEBC@mefm.bc.ca or write us at 916 West Broadway #462, Vancouver, BC V5Z 1K7 attn. D. Mitchell. We will relay this information to our MEBC member.

5. Dear ME & You:  the "Whey" to Better Health?

I recently heard about a treatment being tried by Dr. Paul Cheney in the U.S. You can read all the details about it in the January/February issue of "The Disability Reporter" pgs. 5 - 11. It is basically the use of undenatured whey protein (Immunocal or HMS 90 is the brand he used) that the body can convert to glutathione. All of the M.E. patients in his study were deficient in glutathione and all said they felt much better after taking the whey.

I'd be interested to know if anyone in Canada has tried this treatment, and if it was of any benefit.

jmadill@smartt.com

6. Dear ME & You: About the Tax Man

I noticed that you had an article on the Disability Tax Credit in your Fall/Winter 1999/2000 newsletter.  Though all of the information was technically correct, I thought I should give your readers a word of warning from my experience.

I applied for the Disability Tax Credit for a number of years. Each year I would have my family physician fill out the appropriate form, I would claim the Disability Tax Credit on my tax form, and I would send everything in to Revenue Canada. And each year when I got my assessment back from them it would show the Disability Tax Credit, so presumably everything had been approved okay.

Then one year a note with my assessment said that not only were they not allowing my claim for the Disability Tax Credit for that year, but they were also RETROACTIVELY disallowing it for all of the previous years that I had been granted it. Suddenly I owed thousands of dollars in back taxes.

I found a lawyer who was interested in my case, and we fought Revenue Canada for over a year. We caught them in lies, they didn't care. Whenever we would provide medical documentation that they requested, they would change the details of their request and we would have to provide yet further documentation, it was never enough. After a year of jumping through these moving "hoops", they finally told us that they DO NOT CARE what the Income Tax Act says. They DO NOT go by that. They have their own interpretation of the definition of disabled that they apply to Disability Tax Credit Claims:  if you would not die without 24-hour, round the clock care, every day, then you are not disabled enough for them to grant you the tax credit (unless you happen to be blind - in that case they will approve the credit).

So, before you get your hopes up too high concerning applying for the Disability Tax Credit, you might want to talk to the people at Advocacy Access at the BC Coalition of People with Disabilities, because I know that they heard of many cases like mine during the mid-90's, for all types of disabilities.

Sincerely,
(Name withheld by request)

7. Physician's Column
by Dr. Bruce Carruthers

ME and the Distrust of Experience

I would like to start with two recent quotes about experience:

An article concerning the unfortunate experiences of air travelers during the recent merger of Air Canada and Canadian Airlines notes that the airlines argued that "much of the criticism is based on anecdotes blown out of proportion." (Maclean's May 22, 2000 issue, p 34). From an article called "Science, Scientists and Society" by John Polanyi, scientist and Nobel Prize winner  "If we treasure our own experience, and regard it as real, we must treasure the experience of others." (Queen's Quarterly, Spring 2000,  p32)

It struck me how commonly the attitude of the first quote is held towards the illness experiences of ME patients. How many of you have had your illness experiences evaluated as self-reports, anecdotal, and unable to be confirmed "objectively", with the implication that they are biased, unreliable, unconfirmable and not to be trusted? How many of you have been judged as magnifying your symptoms (whatever that might be), or suffering from the "perception of illness" or from "illness behavior", or that you have caught a mass hysteria?  How many of you have been told that you are just depressed?

How many of you have been told to stop focusing on your symptoms so that you can get on with life? How many of you have been urged to push your way through your fatigue signals so you can improve your conditioning? How many of you have tried cognitive behavioral reconditioning to improve your attitudes towards illness and coping strategies?  All of these diagnostic labels and therapeutic approaches presuppose that it is your experience of the illness that is faulty, rather than  anything in the real world itself, it is a "mental" condition, to be cured by changing your mind and attitudes. Under these hypotheses, which originate from objective or pseudo-objective thought, nothing has to change in your body since it has not really been affected by anything. This all feeds into the general distrust of subjectivity that is so characteristic of our society, and into the idea of imaginary illnesses.

It strikes me how rare is the attitude expressed by the second quote - to treasure another's experience as you do your own. But you have to trust your own experience in order to treasure it. While it is arguable that the feeling of pain is responsible for withdrawal of your hand from a hot stove since the withdrawal happens before (in objective time) the pain is felt consciously, does this mean that you should distrust your feelings of pain and try to ignore them the next time your hand is on a hot stove?  It is certainly not arguable that your awareness is responsible for your jumping out of the way of an oncoming motor vehicle, since there is no handy reflex present to explain it. Would you  not trust and treasure the experience that saved you from injury in this manner? And don't you have to trust another's experience when you are riding in a car as a passenger? These attitudes come out of our world of concrete experience and action, what I call the lifeworld (the world that all of us actually live in through experience and action) which is regarded as subjective by objective thought.

In the early stages of ME many of you will have had the experience of distrusting your fatigue signals since they were so unnaturally placed in the flow of your habitual activities; and then trying to push through them to finish  a particular activity; only then to find that the fatigue refused to be ignored, but continued to worsen to the point of a total bodymind "crash". It is by this harsh experience that you are forced into learning that these fatigue signals are real and not false, and that  ignoring  them as if they were false has a devastating effect on your life. They are not false signals that can be safely ignored in order to carry on with your life as before, but very real in their effects on your life, and anyone who tells you otherwise is stating an obvious falsehood.

Patients with ME learn by trial and error what they can still do and what they can't. They must reliably assess when they can do something and when they can't, when they have to get out of the way, etc.,  for their very survival may depend on it.  These are decisions based primarily on subjective symptoms and events, and are obviously accurate for the most part, since we are all still here.

Indeed recent work on brain function has confirmed that much of its activity is devoted to developing a unique here-and-now point of view on the world and preparing appropriate actions for the organism it inhabits and helps to regulate, in other words constructing and acting in a lifeworld. Our brains provide us with the subjective, anecdotal experience upon which we depend in order to live. This experience is only "blown out of proportion" because it represents our own point of view, and it earns our trust by being effective in the real world. We don't live in  the scientific generalizations which describe our brains from an objective viewpoint.

Unfortunately many assessments of patients with ME are made by observers who are at least feigning objectivity, and hence regard the patient's lifeworld as irrelevant to their decision.  Until this situation is clarified, many wrong-headed and unfair patient assessments will continue to be made. It is the development of unexpected and inordinate brain fatigue that makes many of the symptoms of ME understandable. Sometimes it is the experience of fatigue that is noted, and sometimes it is the undue deterioration of cognitive function that is experienced, but usually these different experiences are mixed together. Sometimes the brain is working to its best standards - when fresh.

Sometimes (when fatigued) it is generating experience that is inaccurate from a general objective point of view and also from the patient's own standards from preillness and "fresh" performance. When you are "crashed" you cannot negotiate a proper lifeworld or act in it. When you are fresh you can. It is essential for you to learn which signals of fatigue and/or deterioration of cognitive functioning must be obeyed in order to reliably steer your life, and which can be safely ignored as false signals, thereby establishing accurate activity boundaries for both physical and cognitive work. This subjective distinction must be learned, usually by trial and error, in order to cope with the illness in the best fashion possible. It is not learned if you follow instructions to ignore your experience or take on the assumption that because some of your experience is sometimes not trustworthy from some points of view, all your experience is not trustworthy, if you do you will continue to make many mistakes and end up "crashed". Do not listen to anyone who infers that this is a mental disorder because they cannot find anything "objectively" wrong with you. You have a problem in brain function, a brain that works well when fresh and poorly when fatigued, in a pattern that is unique to yourself, and which is directly (but not totally) accessible to subjective experience.

The human brain has been called the most complex system in the entire universe. The methods for objectively confirming its many types of dysfunction are very much in their infancy. We know from laboratory evidence in ME patients that similar sorts of dysfunction are probably occurring in the other major regulators of the human bodymind, the immune and endocrine systems, but these are not as open to direct subjective experience as is brain dysfunction. We must learn to stop avoiding the brain's subjective experience as we chase more and more elaborate objective methods of observation which will never tell us how to live our lives in the here and now. We must return to bodymind practices that increase the accuracy, adequacy and depth of our own subjective experience; which is, after all, irreplaceable in the living of our uniquely placed and timed lives. As a patient you need to believe the evidence of your own experience, that the symptoms and types of dysfunction you find in your lifeworld are really there.  For if you do not believe this evidence from your own senses, you have deprived yourself of the most important tool to heal yourself and guide your life appropriately. As the accuracy and adequacy of your experience improves, so does your ability to devise effective strategies of living to prevent, ameliorate and avoid symptoms. This will not be done if the assumption reigns that all of your subjective experience is inaccurate and must be replaced from the outside using behavioral and other manipulative techniques. But it can be helpful if someone who honestly makes an empathic identification with your lifeworld also continues an ongoing dialogue with your self-healing self.

8. Chiari Spinal Surgery Prompts Serious Controversies

An article in last November's Wall Street Journal reported on the deep controversies surrounding spinal surgery for CFS, including claims by many patients of substantial or complete relief of their symptoms, claims by others that the expensive surgery failed, charges by doctors of bad medicine, lawsuits, and a surgeon who offers the treatment being forced to leave his university faculty.

A more recent report by ABC News was more upbeat, not mentioning the controversies.

The Wall Street Journal article appeared on the front page of its edition of Thursday, Nov. 11, 1999.  It recounted many cases of dramatic improvement, including that of physician Sam Banner who had lost his practice due to debilitating symptoms diagnosed as fibromyalgia.

However, other patients did not benefit from the surgery, whose cost is about $30,000 per case.  Dr. Daniel Clauw, a rheumatologist in Washington, DC, is quoted as saying that only an "extremely low percentage" of CFS and fibromyalgia cases are suitable for such surgery.  Other doctors are reported as saying that "some operations were unnecessary and unhelpful."  Dr. D. Bruce Woodham wrote "These patients are desperate people, eager to obtain any sort of relief that might be offered them.  They, I feel, are easy prey to someone who offers them a quick fix for a problem that does not have a quick fix."

Dr. Michael Rosner, a recognized pioneer of surgical techniques, was apparently forced off of the University of Alabama faculty for doing this kind of surgery in cases where, in the view of Rosner's peers, it may not have been called for.  And yet some of his former university colleagues published an abstract of work that, Rosner claims, sought credit for his ideas on surgery as applied to fibromyalgia.

Several patients have filed lawsuits regarding the surgery they had received, some claiming they are now worse than before.  Among those cases reported in the Journal article, most were settled out of court, and no court judgments were made against any of the doctors involved.

The ABC News report broadcast on March 10 focused on the positive results of the surgery.  Nonetheless, their medical advisor cautioned that the surgery only be considered "for patients with abnormal neurological exams and abnormal findings on MRI", and that the procedure "must definitely be considered experimental.  It is too early to tell how long results will last and which patients might most benefit."

(Thanks to Chip Davis for assistance with this report.)

9. Dr. Stiver and Kenna Sleigh's Study

Volunteers are needed for UBC research study about how to cope with CFS.

Investigators: Dr. Grant Stiver and Kenna Sleigh, RN, MSN (PhD candidate in the Experimental Medicine Program at UBC). Study procedures include one screening visit followed by four sets of questionnaires that can be mailed in. The study duration is two years. You are required to be diagnosed to have CFS.

Call: 875-5555 ext. 62366 or pager 871-5263

10. Message in a Bottle

In the Spring 2000 Special Edition of ?ME & You? we launched our "Message in a Bottle" campaign, asking those with M.E. to write their story and send it in a bottle to Canada's Health Minister, the Hon. Allan Rock. The following is the response that one of our members received:

REPLY FROM ALLAN ROCK

Thank you for your correspondence concerning environmental illnesses.

A number of Canadians have expressed their concerns to me regarding chronic fatigue syndrome, fibromyalgia, multiple myalgic encephalomyelitis, and chronic fatigue immune deficiency.  The Message in a Bottle campaign increases awareness of the many challenges individuals face that suffer from these conditions.

These diseases are a complex group of health conditions whose causes have not yet been identified. There has been a great deal of controversy surrounding these issues due to the subjective nature of many of the symptoms, relative lack of objective clinical findings in patients, and the absence of generally acceptable laboratory tests.

Health Canada officials have been working with health professionals, physicians, researchers, non-governmental organizations, and advocacy groups on various issues relating to these diseases. In fact, the Department's Laboratory Centre for Disease Control has established a working group of experts in this area to advise the Department on how to best promote health professionals? awareness and facilitate research funding on these conditions.

Health Canada encourages initiatives, which will improve awareness and knowledge of these health issues. For example, discussions are under way between a number of advocacy groups, professional organizations and departmental officials for the planning of a three-day national symposium on these illnesses in November 2000. The Department is also planning to conduct expert consensus workshops to produce national guidelines on clinical definitions and practices, and to publish information booklets for the general public, on environmental and related diseases.

As you may know, Private Member's Bill C-416, an Act to amend the Department of Health Act, received first reading on February 7, 2000. Under this Act, the Minister of Health would be responsible for conducting medical and scientific research to establish the existence of environmental illnesses; to study the causes and effects of environmental illnesses and designated illnesses; and, to prevent, diagnose and adequately treat environmental illnesses and designated illnesses.

Health Canada fully supports research and discussion on policy issues relating to these illnesses. I believe that, with the dedicated efforts of the scientific and public community, progress in resolving these important health problems will continue to be made.

Once again, thank you for writing to me. I appreciate having had this opportunity to respond to your concerns.

Yours very truly,
Allan Rock

11. Belgium Recognizing CFS

According to an article in De Standaard on Oct. 18, 1999:

Belgium's Vice-Premier Johan Vande Lanotte and Minister for Social Services Frank Vandenbroucke have stated that CFS is a "serious problem", and that they will clear the way for the official recognition of CFS as a chronic disease.  Minister Vandenbroucke further stated "I want to recognize and finance a few reference centres for patients with CFS within the upcoming year.  In these centres, medical teams will specialise in CFS, improve medical expertise and support general practitioners."

The statements by the government officials followed a demonstration by CFS advocates in the town of Oostende, led by patient Francine Devriendt.