Volume 16 Fall - Winter 1999

1. MEBC News
   1. MEBC Annual General Meeting Notes
   2. A Friend Leaves
   3. President's Message
   4. A New Appointment
   5. We Are Looking for Doctors
2. ME Awareness Week
3. BCFM Society Extraordinary Meeting
4. What is ME?
5. Physician's Column - On 'Crashing'
6. Legal Corner
7. Aromatherapy
8. Isoprinosine Works for Me
9. Using Vitamin B-12 for the Management of CFS
10. EPD and Me
11. The Precautionary Principle
12. Teenager Misdiagnosed
13. Disability Tax Credit
14. A Letter From Brenda
15. Studies on CFS Stigma
16. The Clinic of Angels
17. AMA Literature Online Free
18. Murphy's Laws of Humor for ME/CFIDS and Others
19. Chemical Sensitivity
20. Looking for People with MCS and FM/ME
21. Want to Help With Future Research Studies?

MEBC News

MEBC Annual General Meeting Notes

The MEBC Annual General Meeting was held on October 23, 1999. Nine directors were elected to the board, including:
* Tom Schweigert - President
* Sherri Todd - Vice-President

The members voted to increase the annual membership fee from $15.00 to $20.00. After the AGM, an informal support group meeting was held to discuss any concerns.

A Friend Leaves

Our past vice-president, Doug Shore, is taking a well-deserved rest. We all appreciate the fantastic contribution to MEBC Doug has made. Thanks Doug!

President's Message

Dear ME survivors,

Welcome to the new century, and new hope for ME sufferers. While hope may seem like an elusive concept for those of you trying to cope from day to day, I would encourage you all to remember that there IS hope for the future. Advances in medical research, a growing body of medical evidence, and new precedent-setting legal judgments all bring positive steps towards widespread medical, legal, and public acceptance of ME as a legitimate medical condition. Without hope, MEBC would never have been formed to give a voice for those too ill to speak for themselves.

On behalf of the ME society, I would also like to thank all our volunteers, both new and old, and encourage them to assist our society to become even more visible and politically active in the future. With their help, I believe we can change the way the general public views individuals with chronically debilitating conditions.

My best wishes to you all.

Sincerely,
Tom Schweigert, President

A New Appointment

by Sherri Todd

MEBC is pleased to announce the appointment of our new volunteer Executive Director, Mr. John Touzel. Mr. Touzel is currently the Western Regional Director, US Telecom Services, AT& T Canada.

Mr. Touzel will support MEBC in carrying out its vision and mission, and will focus on strategic planning leading to MEBC being a funded and staffed organization supporting MEBC members. His role will include the recruitment of an interim volunteer MEBC management team (as well as other healthy volunteers), and supporting MEBC through extraordinary events.

We are Looking for Doctors

MEBC wants to hear from you if you know of any particularly good doctors or bad doctors. Please write to us or leave a phone message.

May 12, 2000 is ME Awareness Day. Can you think of some project that you could take on to help move the facts about ME forward?

Perhaps you could:
1) Provide pamphlets to a nearby group of physicians or a local walk-in clinic.
2) Place an advert in a local community paper giving the phone number of the nearest ME support group.
3) Canvas your relatives and friends in search of a well (and skilled) person who would be willing to become a volunteer for MEBC.
4) Set up an information booth at a local shopping mall and be prepared to chat with individuals who appear interested in the subject.
5) Write a letter to the editor of your local community newspaper.
6) Write a letter to your local MP to make her/him aware of any aspect of the difficulties surrounding this illness that your personal story will illuminate. Urge them to become more informed about the severity of the symptoms and frequency of the new cases being diagnosed.

There are probably lots of other excellent ideas out there. Why not let MEBC Awareness Day be a catalyst for action for new ideas? Every little bit counts.

BCFM Society Extraordinary Meeting

On January 18, 2000, the BC Fibromyalgia Society held an Extraordinary General Meeting to consider a resolution to dissolve the society. The resolution was defeated by those members present to give the Board of Directors more time to consider a proposal sent by MEBC by President Tom Schweigert on January 16, 2000. The MEBC proposal suggests a single stronger society to support members of both the BC FM Society and MEBC.

What is ME?

Recent discussions at the Brussels conference and elsewhere have helped to clarify that Myalgic Encephalomyelitis (ME) and CFS are not the same entity. There has been confusion about this, even in Britain where ME was first defined and studied under that name.

What exactly is ME? According to ME experts, the key difference between ME and CFS is that ME requires the criterion of easy fatiguability following minimal exertion and a delay in recovery of muscle strength. In the CDC definition of CFS this criterion is optional.

Several ME experts perceive that properly defined ME excludes all psychiatric cases, whereas chronic fatigue syndrome as defined by the CDC allows for the inclusion of many psychiatric cases.

ME has been described several times in medical literature. It was first defined in an editorial published in the Lancet in 1956 which discussed several epidemic outbreaks of prior years. This first description was rather loose and was not very specific. In later years, Acheson, Ramsay, EG Dowsett and others refined the definition of ME in various published papers (see the citations below).

After Ramsay died in 1990, Dowsett et al. wrote the latest version of the ME definition now known as the "London criteria". These have been used in recent papers by Costa (Brainstem perfusion is impaired in patients with CFS, QJM 1995; 88:767-773) and Scholey (A comparison of the cognitive deficits seen in ME to Alzheimer's Disease, Proceedings of the British Psychological Society, 1999, January 12).

London criteria for Myalgic Encephalomyelitis, 1994
by EG Dowsett, E Goudsmit, A Macintyre, C Shepherd, et al.

[Note: in recent years PVFS (postviral fatigue syndrome) has become synonymous with ME]

All three criteria must be present for a diagnosis of ME/PVFS to be made:
1) Exercise-induced fatigue precipitated by trivially small exertion (physical or mental) relative to the patient's previous exercise tolerance.
2) Impairment of short-term memory and loss of powers of concentration, usually coupled with other neurological and psychological disturbances such as emotional lability, nominal dysphasia, disturbed sleep patterns, disequilibrium or tinnitus.
3) Fluctuation of symptoms usually precipitated by either physical or mental exercise.

These symptoms should have been present for at least 6 months and should be ongoing.

Although ME/PVFS typically follows an infection, usually a virus illness (which may be subclinical) in a previously fit and active person, it has also been observed to be triggered by other factors such as immunizations, life traumas and exposure to chemicals.

Furthermore, in a minority of patients, ME/PVFS has a gradual onset with no apparent triggering factor. For these reasons proof of a preceding viral illness is not a prerequisite for diagnosis.

Many symptoms are experienced by people suffering from ME/PVFS and in the right symptomatic context they contribute to the validity of the diagnosis. Nevertheless, not all people suffering from ME/PVFS experience all these symptoms and their absence does not exclude the condition.

These can be subdivided into the following two categories:

Autonomic
bouts of inappropriate night or day-time sweating; Raynaud's phenomenon; postural hypotension; disturbance of bowel motility manifesting as recurrent diarrhea or occasionally constipation (these symptoms are frequently indistinguishable from those of irritable bowel syndrome);

Photophobia
blurred vision due to disturbed accommodation;

Hyperacusis;
frequency of micturition; nocturia immunological (symptoms suggesting persistent viral infection) episodes of low-grade fever (not exceeding an oral temperature of 38.6C) combined with feeling feverish, (i.e. a down-regulated 'thermostat'); sore throat which may be persistent or recurrent (i.e. present for at least one week per month); arthralgia (fixed or migratory)

This list is by no means exhaustive. Headaches, nausea and bloating, for instance are common symptoms in many patients but are not sufficiently discriminative because of their widespread occurrence in many other disorders. The curious intolerance to alcohol and hypersensitivity to drugs are highly specific in this context. It should also be emphasized that the symptoms of ME tend to vary capriciously from hour to hour and day to day. Nevertheless it is absolutely characteristic that they tend to be exacerbated by physical or mental exertion and the association should always be sought whilst taking the history.

Physician's Column

by Dr. Bruce Carruthers

On 'Crashing'

Everyone who has M.E. knows what we mean by 'crashing', but few outside observers do, since it does not fall into the norm of human experience. This is what makes it a symptom, and not just a part of normal feeling and behavior. It is not just normal fatigue but more severe, as many patients can precisely distinguish between their normal fatigue however severe, and 'crashing'. There has been a qualitative shift in the feeling of fatigue, not just a quantitative one.

Normal fatigue is a signal from your bodymind that you cannot continue much further with an action, or cannot initiate further action. It can be general, diffusely affecting the whole bodymind, or it can be local, from certain regions of the bodymind only. While fatigue predominantly qualifies voluntary muscular actions, it is also common to feel mental fatigue from sitting at a computer too long, reading for too long or trying to cope in a busy and complex environment for too long. Fatigue also affects the emotional realm, when people need to withdraw from feelings felt as excessive to become quiet for awhile. Such normal fatigue is relieved by resting the region of functioning concerned. Luckily our hearts, blood vessels and gastrointestinal muscles do not fatigue, nor do the parts of our brain responsible for regulating vital functions such as breathing, heart rhythm and vital reflexes. Our voluntary muscles and our conscious brains do fatigue, and the normal 'cure' for this is rest, change of subject and/or sleep.

As our voluntary actions fatigue, they become clumsy. This is the outwardly observable 'objective' manifestation of a falling apart of the action that accompanies the fatigue you feel from the inside. Not only do muscular actions fall apart in this way, but sensory, modeling, memory and stabilizing functions of the brain do also. For example, we all depend on our body sense or proprioception to stabilize our perceptions and actions. For example, if you destabilize the body sense of stability by whirling, all your perceptions and actions are disturbed, and may become impossible because of the resultant dizziness. A similar destabilization of balance may affect patients with M.E. to the point where they cannot walk a straight line. Fatigue may affect other specific functions of the brain. It may affect those deep movement programs that guide your walking, running or climbing stairs. It may affect your ability to structure your perceptions by making figure/ground distinctions. It may affect your ability to screen out irrelevant stimuli. It may affect functions responsible for mapping your route to a destination, telling you where you are or producing a linear sense of time by sequencing past, present and future events (which tells you when you are, and how you are connected to your immediate past memory and to your bodymind's predictions for the immediate future). The fatigue associated with these failures of central nervous system (CNS) function has an entirely different feel to it than does the fatigue associated with voluntary muscle action, yet receives the same name. When the immune system or endocrine systems begin to fall apart, there is no directly correlating signal of fatigue, but some immune dysregulations may be accompanied by fatigue secondary to cytokyne release, and some endocrine dysregulations are very fatiguing.

It is important to realize that these disturbances of function are temporary expressions of fatigue and not a permanent loss of function. After a rest you feel fresh again and can carry on with your activities. But what if you can't sleep to rest your brain? What if your resting doesn't freshen you or restore your functions? What if your fatigue doesn't come at the expected time, i.e. at the end of an action? What if it comes 1-2 hours or days later-or before the action, while you are still planning it? What if fatiguing is cumulative, i.e. coming on more and more quickly and completely as you attempt to carry on with repetitive activities?

It is here that our description begins to approach the pathological fatigues found in M.E. and felt as 'crashing'. Such fatigues can affect almost any region of bodymind functioning. Whatever specific function has failed, it stops your functioning as a whole with respect to your life-world, and you 'crash'- luckily temporarily and incompletely. The feeling is less "Oh, I'm tired and need a rest" than "If I don't stop now a disaster will happen". In other words, there has been a loss of ability to function in the situation and regulate it, and chaos is about to supervene. This is no normal fatigue. If an action is likened to a journey, then normal fatigue occurs at the end of the journey, when you expect it and can accommodate for it. By definition, 'crashing' happens before the projected end of your journey, and at an unpredictable time, so you can't accommodate for it. It stops your actions prematurely and unpredictably.

This 'crashing' disturbance is deeper than normal fatigue. I have theorized that it comes from the dimensional level of functioning, where reliable timing and spacing coordinates are found/formed for an individual person with respect to her/his ongoing situation. These play an essential role in putting our life-worlds into order, and render our experience and actions reliable and predictable. These dimensional levels are not disturbed in normal fatigue, but have become unreliable when we 'crash'. We are not talking here of generalized and standardized space and time coordinates, but of the time and space that your bodymind uses to measure the world as you perceive it and act in it-your life-world. This is a world that is unique to you, yet shared with all others.

Because of the uniqueness of each person's life-world, each person will experience a dimensional disturbance differently. M.E. is a very individualistic disease! But the treatment is universal-adjust your life-world so that you can minimize 'crashes' and construct/find a life-world that you can function within to your capacity. By making your environment more predictable and reliable, you can take off some of the burden from your bodymind to allow it to heal and regain competence to handle a more complete life-world. To do this basic self-healing, it is crucial for you to identify the situations that trigger your 'crashes' and the types of functioning that are affected. When you have been able to identify your 'crash' situations more clearly, and have been able to note their triggers, alleviators and what functions they affect, you will be much more able to regulate your life-world so as to avoid 'crashing', and/or reduce its harmful effects. More specific therapies for M.E. will have to wait until the molecular and physiological events that embody these disturbances are identified, when the whole pathogenesis can be viewed more clearly. Until then we must bear with 'empiric' remedies and life-world adjustments.

As some of you know, I am writing about these issues at present. I have talked to many of you concerning these matters, but need to get a better picture of the full spectrum of 'crash' symptoms and how they respond to different adjustments of the life-world. If you have had experiences along these lines that you would like to share, I would appreciate hearing from you by mail at R.R.#2, Galiano, B.C. V0N 1P0.

Legal Corner

By Brad Garside, Lawyer
C/o Payne Edmonds, 1100-510 Burrard St., Vancouver, BC V6C 3A8. 683-1211

"Total Disability Claims"

The purpose of this article is to discuss how the Courts have interpreted the definition of "total disability" in insurance policies for the purpose of determining whether a claimant is entitled to disability benefits (LTD benefits).

The primary medical-legal issue is whether the patient has been disabled from working according to the definition of "total disability" in the insurance policy.

It is not enough for the doctor just to describe the medical diagnosis. In the medical-legal report the physician must address three inter-related issues;
* the medical history and the diagnosis;
* the functional limitations or restrictions arising from the cumulative effects of the patient's medical condition (both physical and mental); and
* provide a medical/legal opinion as to whether the functional limitations render the patient disabled from working in accordance with the definition of "totally disabled". -

Total Disability Definition

The definition of "total disability" in most insurance policies is usually along the following lines:
'disability' and 'disabled' mean that because of injury or illness:
* "own occupation" phase - the insured cannot perform each of the material duties of his regular occupation; and
* "any occupation" phase - after benefits have been paid for twenty-four months, the insured cannot perform each of the material duties of a suitable alternate occupation (or any gainful occupation) for which he is reasonably fitted by training, education, or experience.

The courts have expressed some guidelines for interpreting the meaning of these policy definitions.

In law, the policy term "total disability" does not mean absolute disability, in the sense that the claimant must be absolutely helpless and unable to do any work tasks. Total disability does not require that the insured be incapable of all activity, only that the disabled person's medical condition is such that ordinary care and reasonable prudence dictate that the person is not fit enough to carry out the main duties of a job or occupation.

Accordingly, the fact that the patient may attempt to return to work or try to carry on working despite a disabling condition does not mean that the person is automatically ineligible for disability benefits.

The Courts have also held that it is not sufficient that a claimant could work on a periodic, part time, or sporadic basis if the person was able to work full time prior to the onset of disability.

The issue is whether the claimant is competitively employable, that is, able to competently perform a particular job to the satisfaction of a reasonable employer on a consistent and regular basis.

"Own Occupation"

The determination of whether the claimant is disabled under the "own occupation" definition is usually quite straightforward. The question is whether the person is able to perform the substantial duties of his/her occupation on a regular and consistent basis.

"Any Occupation"

The question of whether the claimant is disabled under the broader "any occupation" definition is often more problematic.

In deciding whether a claimant is disabled from engaging in "any occupation", the courts consider a number of variables: education, training or experience of the insured; the state of health and physical capabilities of the insured; and the general suitability of alternative occupations in terms of status and reward, compared to the claimant's regular occupation.

This does not require the claimant to disprove every possible alternative, that is, an inability to perform any and every conceivable job or a menial one.

The insurance company also cannot rely upon mere speculation of an alternative job that might be suitable to the claimant to justify denying benefits.

The courts have also stated that it is not sufficient that a claimant could perform an alternative occupation only on a periodic, part-time, or sporadic basis.

The insurance company must produce evidence of specific jobs, suited to the claimant, that are within the claimant's capability of performing competitively to the satisfaction of a potential employer.

The main criteria under the "any occupation" definition are:
* the alternative job must be one that is suitable for the particular claimant, in the sense that the claimant is:
* physically and mentally able to perform the job; and
* qualified by education, training or experience to access the job; and
* the alternative job must be reasonably commensurate to the claimant's regular occupation in status and in reward, (i.e. range of compensation).

Accordingly, the claimant does not have to show that he or she is incapable of any form of labor in order to be entitled to disability benefits under the "any occupation" definition. The "any occupation" definition does not literally mean any occupation.

The issue is whether the claimant is competitively employable; that is, able to competently perform a suitable alternative job on a regular and consistent basis.

Conclusion

As a lawyer who handles claims for disability benefits, I strongly recommend that people who are making claims for benefits seek legal advice as early as possible to ensure the claim is properly advanced. Obtaining legal advice early from a lawyer who is familiar with LTD claims often prevents more serious problems from developing with the insurance company.

Aromatherapy

by Deborah Drummond-Baker
Deborah gave an aromatherapy presentation to the Tri-City ME/CFS Support Group on the benefits of using essential oils for ME. She can be reached at (604) 739-3926.

First let me say that aromatherapy is not new. The use of essential oils is an age-old science that has been used for its therapeutic properties to deal with both physical and emotional issues. Aromatherapy has now made its way to the West and we should all be grateful. The benefits of these wonderful little drops of oils are world-renowned. The number of documented cases, especially in the U.K., of successful applications of essential oils for the benefit of physical and emotional health is outstanding.

Essential oils are a very popular choice for those seeking better health and for preventative health care. I want to give you a basic understanding of how to use aromatherapy for the most common symptoms of ME.

Ways to use essential oils

Showers: Immediately before you enter the shower, shake a few drops of essential oils into the water, enter and breathe.

Baths: Add 4-6 drops of essential oils to your bath, once the water is in.

Massage: Add 4-8 drops of essential oil to 2 ounces of carrier oil, and self massage parts of your body, or have someone do it for you.

Spray: Use especially for refreshing yourself. Put 4-8 drops in the spray bottle; add purified water and then spray on your body or in the room.

Car: Put 3-4 drops of essential oils in the car diffuser and hang.

Scentball: Put 5-7 drops of essential oils on the scentball and plug into any room where you need the oils.

Ceramic: Put 4-8 drops of essential oils into the dish with water, light the tea-light candle and place in the room of your choice.

Cotton balls: Put 1-2 drops of essential oil on your cotton ball and put between your pillow and pillowcase. Use this method if you have trouble sleeping.

And, of course, the easiest way of all is to simply take the lid off the bottle and breath. This is a very effective way of having the oils make their way into the body and do their job.

When looking for essential oils for therapeutic benefits, use a high-grade, therapeutic line of oils, not a commercial grade. A lot of the time you'll be able to tell by the smell as well as the price. As always, you get what you pay for. The better the quality of oils you use, the better the results, and in most cases, you can use less oil.

Symptoms

Here is a summary of symptoms, the different oils to use and the best way to use them. Remember that some people will enjoy and benefit from different oils than other people, so try what's best for you.

Fatigue, exhaustion - grapefruit, lemon, rosemary, lime - diffuser, showers, smelling, spritzer.

Headaches - peppermint, grapefruit - apply with oil to affected area.

Insomnia - lavender, chamomile, valerian - cotton ball, baths, scentball, massage.

Sore muscles - thyme, peppermint, rosemary, chamomile - massage, baths.

Depression, feelings of loss - rose, orange, chamomile - cotton balls, spritzer, massage, baths.

Cold/flu -- thyme, tea tree, eucalyptus - massage, diffuser, bath, shower.

Immune builder - grapefruit, juniper berry, thyme - diffuser, massage, spritzer.

Relaxation/balancer, de-stressor - lavender, marjoram, ylang ylang, rose - Bath, diffuser, cotton balls.

Feelings of anger - rose, orange - breathe, bath, diffuser.

Memory stimulator - rosemary, lemon - spritzer, breathe, cotton balls.

In summary, it thrills me to know that we have such an easy form of medicine we can use to help us create a better sense of health and well being. You can easily bring the use of essential oils into your lifestyle by adding it to your showers or baths or plugging it into the wall. All you need is a little willingness to try something new based on what our European ancestors have done. I hope that you will find the solace that so many people have seen over the years.

At Metropolitan Aromatherapy, we run public lectures and provide free aromatherapy gifts. We also do aromatherapy home parties, with a variety of ways of achieving free products, as well as treatments in our massage studio. Call for information on how you can receive a free 1/2-hour treatment with your first massage booked. I wish you good health.

Isoprinosine Works For Me

After reading about Dr. Byron Hyde's study with Isoprinosine for CFS in the last edition of M.E. & You, I contacted the pharmaceutical company Rivex Pharma Inc. On my request, they promptly sent an information packet to my doctor. I've been taking Isoprinosine for approximately two and one half months.

I've noticed quite an improvement in my condition. I have more stamina and when I tire I recover more quickly with shorter resting periods. I feel better in the morning and believe my cognitive function has improved. I have not noticed any disturbing side effects.

Isoprinosine is expensive and not yet approved by Pharmacare. I understand that Rivex Pharma Inc. is planning to make an application to Pharmacare for approval. Dr. Hyde apparently has an updated website (www.nightingale.ca.) with a summary of the clinical results with Isoprinosine.

If anyone is interested in learning more about the drug you may contact regulatory affairs manager, Livia Maduri, who would be glad to talk to you and send information to your doctor. Her phone number is 800-784-0975 (Rivex Pharma Inc.) Address: 3-305 Industrial Parkway S. Aurora, Ontario, Canada L4G 6X7. Fax (905) 841-2244. E-mail: Imaduri@relixbiopharma.ca

It is really wonderful to feel better. I wish you all luck in your pursuit of health!

Sincerely,
Lorraine
Maple Ridge, BC

Using Vitamin B-12 for the Management of CFS

by Charles W. Lapp, MD

Dr. Charles Lapp specializes in internal medicine and pediatrics. He practices at the Hunter-Hopkins Clinic in Charlotte, N.C.
Reprinted from November/December 1999 issue of The CFIDS Chronicle, PO Box 220398, Charlotte, NC 28222-0398, 1-800-442-3437. (c) 1999 The CFIDS Association of America, Inc.

History

In the late 1980s, Dr. Paul Cheney and I heard several anecdotal reports of chronic fatigue syndrome (CFS) patients who improved when their primary care physicians administered B-12. Given the scarcity of effective treatment options for CFS, we set out to try various doses and preparations in our own patients. This treatment was based on three articles that appeared in the New England Journal of Medicine demonstrating that persons with CFS-like neurological symptoms and normal blood counts could benefit from the administration of vitamin B-12 injections.

In these patients, problems such as numbness or tingling in the extremities, abnormal gait, memory loss, weakness of the limbs, changes in mood and personality and even fatigue were improved, and even resolved, with B-12 therapy. In addition, during this period of time Dr. Les Simpson was describing how changes in the red blood cells in persons with CFS reversed when high doses of B-12 were administered. With this in mind, we began treating patients with cyanocobalamin (a form of vitamin B-12 that is readily available in the U.S.) at doses from 1000 mcg weekly to 5000 mcg three times weekly, given subcutaneously (through injections under the skin).

Patients appeared to have a significant response at approximately 2000-2500 mcg, and reported increased energy levels, improved stamina or an enhanced sense of well being within 12-24 hours of administration. The effects lasted two to three days on average. However, many patients required up to six weeks to achieve regular, consistent results, and a wide range of dosing proved to be effective, from 1000 mcg injected daily to 5000 mcg injected three times per week. To obtain a continuous and satisfactory level of improvement, we now recommend injections of 3000 mcg of cyanocobalamin every two to three days.

An informal poll of our patient population revealed that 50-80% improved to some extent with this simple therapy. However, we found that oral or nasal spray preparations of B-12 did not produce a demonstrable effect.

Scientific explanation

The vast majority of our patients had normal serum B-12 and folate levels prior to the start of therapy, which indicates that routine laboratory tests may not reveal a deficiency. It also suggests that our therapy was effective because vitamin B-12 was not being absorbed or utilized properly by individual cells.

Difficulties can arise at any point during metabolism of B-12, resulting in many negative effects on the body, including nerve damage. Potential problems can include:

Transport failure-the B-12 does not make it through the cell wall from the bloodstream. This is problematic because once inside the cell, B-12 functions as a cofactor, which means that it helps start important chemical reactions that allow the cell to function.

Failure to degrade completely-if the process of metabolism is working correctly; the B-12 compound is broken down in a series of reactions. When the enzymes (synthetase and reductase) that facilitate those reactions do not do their job, chemical byproducts can build up and nerve cells can be damaged.

Dietary insufficiency-this rarely happens because many of today's processed foods are supplemented with vitamins, including B-12.

Research findings

Studies from SpectraCell Laboratories using the EMA technique (which measures the metabolic response of a patient's blood cells to individual nutrients) demonstrated that more than 70% of 66 individuals with chronic fatigue-not necessarily CFS-demonstrated B-12 deficiency, compared to about 40% of the normal population. It follows logically that individuals with chronic fatigue syndrome would also experience abnormalities in B-12 metabolism.

At the Cheney Clinic, we measured homocysteine and methylmalonate (organic acids that are elevated when B-12 is not metabolized properly by cells) in CFS patients. Homocysteine was elevated in 33% of the individuals tested, methylmalonate in 38%, and both were elevated in 13%. Thus, about one third of CFS cases could perhaps have symptoms attributable to B-12 deficiency.

Researchers have hypothesized that the B-12 deficiency seen in CFS may be due to a genetic abnormality...

However, my experience suggests that inability to transport B-12 across the cell membrane is the major cause of abnormal B-12 metabolism in persons with CFS, because large doses of B-12 markedly improve cognitive ability, mood, irritability and numbness and weakness in a majority of patients. Those who respond poorly to high doses of B-12 may have low reductase activity. The latter should improve somewhat if they supplement their diet with folic acid, which helps improve the action of this crucial enzyme. I generally recommend 1 mg of folic acid daily, in tablet form, for those individuals who do not respond well or at all to B-12 injections.

Administration

Two forms of B-12 are available to consumers: cyanocobalamin and hydroxycobalamin. Of the two, I have always preferred cyanocobalamin because it is less likely to cause adverse reactions and stings much less than hydroxycobalamin when injected. The cost of high-dose B-12 therapy is approximately $8 to $10 per month.

Patients can be taught to administer their own injections of B-12 using the same 1cc insulin syringes diabetics use. They will need to obtain a supply of the B-12 solution from their physician- cyanocobalamin is typically prepared in 10 ml or 30 ml multi-dose vials, and should be stored in a cool dark place because both heat and light degrade the product rapidly. A cabinet or refrigerator is satisfactory.

Large doses of B-12 could theoretically compete with other B-vitamins in the cell, so to prevent deficiencies I always recommend that patients starting injections supplement their diet with multivitamins containing B-vitamins as well as folate.

Toxicity and Adverse Effects

Toxicity or "poisoning" from cyanocobalamin, a form of B-12 that is combined with very small amounts of cyanide, has been the major cause or patient concern about high-dose B-12 therapy. I have not encountered any evidence of cyanide toxicity. The amount of cyanide administered is so minuscule that it affords a wide margin of safety even at doses of 15,000 mcg per week. Although this dose may seem inordinately large, medical textbooks have long recommended doses of 1000 mcg per day (or 7000 mcg per week) for the treatment of nerve problems due to B-12 deficiency. The only exception is in individuals with kidney failure. In patients with normal B-12 levels and intact kidney function, excess cyanide and B-12 are simply excreted through the urine.

I have recommended high-dose B-12 to thousands of patients over the past 10 years and have seen no serious adverse side effects. The major complaint about B-12 from patients is bruising at the injection site. This is harmless, goes away quickly and can usually be eliminated by inserting the needle perpendicular to the skin or using a longer needle. The "bruise" may actually be accidental leakage of the crimson-colored B-12 solution under the skin.

Although some drug references indicate that idiosyncratic reactions are not uncommon with B-12, I have only had one patient who developed hives and chills after an injection, and even that person could tolerate occasional small doses.

A rare individual will develop a raised red bump at the injection site, but this is usually attributable to agents added to the B-12 solution to inhibit the growth of bacteria in the vial and not the B-12 itself. In such cases, the pharmacist can prepare small vials of B-12 without the bacteria-inhibiting agent. With high doses of B-12, an acne-like rash also may occur, but the rash usually responds promptly to a reduction in dosage.

Some patients respond so well to B-12 that they become hyperactive-nervous and excitable-but this too can usually be resolved by reducing the dose. Because of this excitatory effect, I recommend that B-12 be administered in the morning, so that it will not interfere with sleep.

Very rarely, a patient's urine will be faintly pink-tinged following a dose of B-12. This "cobalaminuria" occurs intermittently, and although it looks alarming, seems to be entirely benign.

Is B-12 therapy for you?

B-12 injections are an effective, safe and inexpensive treatment in the management of CFS. There is evidence that B-12 metabolism at the cellular level is abnormal in persons with CFS, possibly due to reduced transport of the vitamin across the cell membrane or abnormalities in the enzymes that help break it down inside the cell. The mechanism has yet to be defined, but in my clinical experience, large doses of B-12 provide improvement in energy and well being in a majority of CFS patients. Persons with CFS who are interested in B-12 therapy and are willing to take an injection two to three times a week should consult with their physician.

Source: Charles W. Lapp, MD

Things to keep in mind about B-12 therapy
- Don't rule out therapy because of test results. Blood serum levels do not necessarily reflect a deficiency, so you may need more B-12 even if your test results are normal.
- You must be comfortable with injections. Many individuals are not willing to get a shot two or three times a week. Unfortunately, the oral or nasal spray preparations are less effective than injections.
- You can administer the shots yourself. If it is more convenient for you to inject yourself with B-12 at home, you can ask your physician to show you how and provide the injection solution.
- Report adverse reactions. Be sure to tell your physician immediately if you experience a rash, skin discoloration, chills or any other reaction following the injection.
- B-12 does not interact. There have been no reported instances of B-12 interacting in a negative way with medications or other nutritional supplements, so you can rest easy if you are taking other substances to treat your CFIDS.
- Take a multivitamin a day. B-12 can potentially hinder your absorption of other vitamins-taking a supplement can help prevent additional deficiencies.
- Results might not be immediate. It takes up to six weeks to see improvement with B-12 therapy, so be patient.

EPD and Me

by J. Harrison

Many of us with ME also have multiple allergies, which make eating a healthy diet difficult and increase the difficulty of recovering from our illness. Before ME, I had mild hay fever, but after ME my allergies went through the roof and I became allergic to so many things-food, chemicals, animals, dust, pollens, etc, etc. I gulped down tons of antihistamines, tried shots that made me worse and avoided what I could, but nothing helped.

A few years ago, I found a new therapy from the UK which has helped so much that I hardly know I have allergies any more. It is called Enzyme Potentiated Desensitization, and consists of one injection every two months to begin with. Currently, I am at one shot every three or four months, but it can be less often for many people.

It does require some patience, as allergies have to be avoided around the time of the shot, and it can take up to a year to start working. Once it takes effect, it is wonderful. Life is made so much easier; you can eat anything you like, be around animals, and enjoy spring again.

Dr. Ron Greenberg is the only doctor in Vancouver to have this treatment, but I believe there is a doctor in Nanaimo who also handles it. The shot is usually covered by extended benefit plans.

You can call Dr. Greenberg's office for more info, or me at (604) 734-3011 (leave message).

The Precautionary Principle

Patient Support Regimes in Litigious Times
by Simon Molesworth

As an outsider to medicine, but as a lawyer, Simon believes that not only is there an inadequate response by the medical profession to CFS but also that there are those in the medical profession who are leaving themselves vulnerable to law suits when it is established that they consider CFS as somatisation disorder or another manifestation of psychopathology without pursuing on-going investigation for other causes.

Time and time again he has found very sick people being sucked into the clutches of inappropriate people (both medical and alternative) because they are being shortchanged by their doctors.

In reality he has found that the psychiatric explanation and cognitive behavioral therapy is the ONLY message getting through to doctors and this is causing a biased, one-sided approach to the illness. Even in the circumstance where multidisciplinary teams are involved, observation confirms that inevitably the approach of therapy focuses on assumed inappropriate cognitions and the psychiatric approach, CBT plus psychotropic medicine, dominates.

Given that there are other well published approaches, BALANCE is urgently needed. Doctors have an obligation to get the learning out there; in all professions if you aren't up with the play, then clients have the right of redress. The message HAS to be (given the literature) that CFS is a complex multifaceted illness, with a multiplicity of causes. Failure for doctors to recognize this raises the specter of litigation.

Misfeasance could be applied where treatment worsens the patients suffering. Nonfeasance applies where there is a lack of ongoing monitoring and investigation of all the options, if it is subsequently proven that a more proactive forensic approach may have brought relief earlier.

To date he has observed that monitoring is not happening and that patients are left in limbo land - this could be classified as nonfeasance. Based on his work in environmental law, Simon asks why "The Precautionary Principle" is not a code of practice embraced by the medical profession working in CFS. This principle suggests that ALL options must be kept open so the parameters of research are not narrowed by a particular discipline.

In conclusion, he called for the need for a nationwide non-exclusionary comprehensive register of all persons diagnosed with CFS together with all those who claim to have the illness. Then we have data, then we have numbers, and then we can gain some power.

His warning to doctors based on the changes in environmental law that he has seen over the past 10 years was "be warned". He predicts litigation over this illness in upcoming years.

Teenager Misdiagnosed

A summarized excerpt from the Brussels conference
The complete text of Mr. Shaw's speech can be found at
http://www.ahmf.org/Conf99_2.htm

After lunch, Mr. Ted Shaw delivered a thought-provoking and disturbing speech about the treatment of one young PWC in Queensland, and the psychiatric profession's general attitude to CFS.

Mr. Shaw described how a teenage girl who became sick with CFS in 1996 was, after profound illness and two admissions to hospital, moved to a psychiatric ward after a hospital doctor declared no physical abnormalities could be found. In the psychiatric ward, the young patient received so little understanding or opportunities to rest and cope with her illness that her mother removed her from sheer desperation. However, the psychiatrist enacted state legislation and successfully had the child removed from the care of her mother, and she is now a ward of the state. Her treating psychiatrist has misdiagnosed her as having multiple psychiatric disorders.

Mr. Shaw described the widespread opinion in the psychiatric community that CFS is 'abnormal illness behavior', Munchausen's Syndrome By Proxy, and other erroneous psychological labels. There are moves by a leading Australian doctor to have fatigue recognized as the 'third arm' of psychological disorders, along with depression and anxiety. Clearly, having fatigue rated as a primarily psychological and not physical symptom will see sufferers of CFS as well as a number of other diseases treated with primarily psychological methods. PWCs in Australia, and in a number of other countries, are caught in the crossfire of insurance companies, government, drug companies and psychiatrists, all of whom have an agenda not allied to the patient interest.

Disability Tax Credit

The disability tax credit provides additional tax assistance for individuals who have a severe and prolonged mental or physical impairment. The credit will reduce your income tax payable if you qualify. If you have no tax payable, you may transfer the credit to your spouse or supporting person. Who qualifies for this credit?

Eligibility for this tax credit is based on the effects of the impairment rather than its presence. You are eligible to apply for the disability tax credit if you have a severe and prolonged mental or physical impairment such that you are markedly restricted in your ability to perform a basic activity of daily living.

An impairment is prolonged if it has lasted or can reasonably be expected to last for a continuous period of at least 12 months.

Markedly restricted means that all, or almost all, of the time, even with therapy and the use of appropriate aids and medication, you are blind, or you are unable, or it takes you an extremely long time, to perform a basic activity of daily living.

Basic activities of daily living are walking, speaking; perceiving, thinking, and remembering; hearing; feeding, dressing; and eliminating bodily waste. If you are not blind, or markedly restricted in at least one of the basic activities of daily living, you are not eligible to claim the disability tax credit.

How to complete this form

To substantiate a claim for the disability tax credit on your return you have to attach a completed Form T2201, Disability Tax Credit Certificate. If the impairment is permanent, it is not necessary to file another Form T2201 in later years unless the circumstances change, or unless we ask you for it. You or your representative have to complete Part A of Form T2201. Then, ask a licensed medical doctor or, in the case of a vision impairment, a medical doctor or registered optometrist (authorized to practice as such), who knows about your or your dependant's impairment to complete Part B. In the case of a hearing impairment, a registered audiologist (authorized to practice as such) can also complete Part B.

Under proposed changes, Part B can also be completed by a psychologist (regarding your ability to perceive, think, or remember) or an occupational therapist (regarding your ability to dress and feed yourself or to walk.)

You may also use the Disability Tax Credit Certificate to substantiate a claim for a deduction for certain medical expenses, attendant care expenses, or for child care expenses for a child with a disability.

Verifying the claim

Additional information and instructions for authorized persons completing Part B.

Medical evaluation

Eligibility for the disability tax credit is based on the functional impairment of your patient, and not on the medical diagnosis. The fact that your patient may be having therapy, using an aid, or taking medication does not mean that your patient no longer meets the eligibility criteria if having therapy, using an aid, or taking medication removes or alleviates a marked restriction.

What are basic activities of daily living? Basic activities of daily living are essential survival skills that need to be performed on a daily basis. Your patient must be markedly restricted in at least one of these activities, or be blind, to be eligible for the credit.

Note

Basic activities of daily living do not include general activities, such as working, housekeeping, or social or recreational activities. When answering the questions related to the basic activities of daily living, consider whether your patient: is restricted in performing the activity even with therapy and the use of aids and medication; is restricted in performing the activity all, or almost all, the time; and requires an extremely long time to perform the activity.

A Letter from Brenda

My name is Brenda (52yrs) and I live in West Virginia. I have had Fibro for the past 9 years. During that time I have been under the care of Dr. Brian Mandel, Rheumatology at the Cleveland Clinic, Cleveland, OH. We have tried all kinds of medications in this time some gave some relief for a period of time, some had horrible side effects, but none work 100% and none gave me a pain free relief. I had a really bad flare in January 1999 and in August when nothing helped I again e-mailed Dr. Mandel for help. To make a long story short, he made appointments with himself and Dr. Mark Stillman, Neurology and set up test for hearing (I have tinnitus for the past 5 years-both ears-constant) and a MRI to be done. After the hearing test and MRI, Dr. Stillman took me off all the medications I have been taking for years.

This is the new med protocol: (1) He started me on Mirapex, .125mg the first night, .25mg the 2nd, .375mg the third and .5mg thereafter.

This is the new medicine for Parkinson's, and they are now using it to treat Restless Leg Syndrome which is part of Fibro. Thirty minutes after taking the first .125 dose my legs stopped hurting and that creepy-crawly-achey feeling went away. For the first time in my life my legs don't hurt. After taking the first dose, I now know why other people don't fidget, and can sit still for long periods of time. I now realize that the pain I had experienced since childhood is not the norm for other people.

(2) He also put me on Celexa 20 mg for one week and then increased to 40 mg to be taken in the morning. This replaced the Prozac, Paxil and Serzone I had been taking for years.

(3) At night: Cyproheptadine(Periactin) 4mg (1 or 2) this is to help me sleep and is to help with the sexual dysfunction that comes with taking antidepressants. This medicine is a antihistamine and works by counter acting or stopping the antidepressant at night, it has replaced Ambien that I have taken for years to be able to get 3-4 hours of sleep.

(4) Maxalt 10mg for migraine headache. My headaches had gotten so bad. I was having them almost every day.

(5) Naproxen Sodium 550mg every 8 hr for pain. This replaced the Ibuprofen 600mg 4 X day that I have been taking for most of the 9 years to take the edge off the pain.

(6) I am to continue taking my hormone replacement therapy and Pre-natal Vitamins that I have been on for the past 5 years.

Note: Since I started on the new medication, I have only had to take pain meds during the first 5 days and have not taken the Maxalt at all. I have not had a migraine at all.

Results: The first week on this new medication was awful. I could not even get up for fear of passing out. Heart palpitations, blood pressure fluctuations, nausea, fever and all over terrible feeling. This I felt sure, and confirmed with my doctors, was the result of my body getting used to the new medication and withdrawal from the old. Each day I felt a little better and by the 5th day I noticed when I got up I wasn't stiff and each day the pain seemed to be "disappearing" Before taking this new protocol, it would take me at least 2 hours after getting up, before I could do much of anything because of the stiffness and pain and the brain fog that was always so horrible. I never knew as each day broke if this would be a day that I would be able to function.

I have now been on the new medication protocol 1 month and 7 days and I feel like I did when I was a teenager. My pain is gone, stiffness is gone, brain fog is gone, energy is improving each day. I have been sleeping through the night since the first night, like a log. Some nights I don't think I even turn over. I awake completely refreshed and can now get up like a normal person, no staggering, running in to things, no having to hold on to things to keep my balance. I'm in total shock, none of the medicine I have taken before has ever come anywhere close to getting me back to normal. This medicine worked so fast it was scary.

Dr. Mandel says he has tried similar meds with other patients but did not have the same results. I got the impression that was because most discontinued the meds because of the same reactions I had the first week with the change in medication. I got an email from him on Monday and he said because of my remarkable result from the above protocol and at Dr. Stillman's encouragement he was now going to try the above protocol on his patients and see if these results could be repeated.

NOW THE WAITING GAME BEGINS. I must wait and see if the Fibro will return, but I am sure enjoying the new me.

I have been traveling (plane and car) no discomfort. Before, I would have to stop at least every hour or two and exercise or be in agony. I have even been horseback riding with my grandchildren which would normally have put me in pure torture for 3 days, and no pain at all. Saturday, I went shopping with my daughter and granddaughter starting at 8 AM and we got home at 11 PM. They were both totally exhausted.

I even loaded 50 lb. bags of horse feed, picked up my groceries and all the supplies for my office and still felt great. Before picking up 5 lbs. of sugar was hard and I had to have a cart to lean on to help me get around in the store. I awoke this morning refreshed and rested and ready to start my day. I am still in awe at the dramatic change this new medicine has made in my life. It no longer hurts for my husband to hug me. I can now play with my grandchildren. I feel I have been given a new lease on life and I thank God each day and pray this will be the answer for this horrible disease.

Dr. Mandel and Dr Stillman are keeping a close watch on my progress and also hope this will be the answer. This is the first time in 9 years of FM or CFIDS or ME or GWS or PTS or what ever they want to call it that I can say "I AM PAIN FREE".

Sorry to go on for so long. If you have any questions, please feel free to e-mail me. I know how hopeless you can feel with Fibro. I just wanted to spread my good news and maybe help someone else.

Best wishes and God Bless you all,

Brenda Thompson
bhthompson@WVADVENTURES.NET

Studies on CFS Stigma

Leonard Jason, Sigita Plioplys. Evaluating Attributions for an Illness based upon the Name: Chronic Fatigue Syndrome, Myalgic Encephalopathy and Florence Nightingale Disease. CFIDS Chronicle July/August 1999, pp. 18-19.

A study by Jason and Plioplys of DePaul University shows that the name assigned to CFS has an important influence on how clinicians perceive the illness. And in a separate study by Green et al. Of William Paterson University, formal measurements show that CFS patients rank high in experiencing stigma due to their illness.

In the Jason study, over 100 medical trainees were asked to evaluate patients who had an illness that was variously called CFS, or Florence Nightingale Disease (FN), or Myalgic Encephalopathy (ME).

Depending on how the patients' condition was named, the medical trainees gave the following evaluations:

                                    CFS    FN     ME

Likely improvement within 2 years:  41%    42%    16%   

Cause of illness is medical         22%    30%    39%  

Jason comments on these results by saying "This finding suggests that the doctors perceived the ME label as being indicative of a more chronic and debilitating illness as compared to the labels CFS and FN. If you have a more medical-sounding name it does seem to change perceptions of the illness. This study provides a much-needed methodology for helping to change the name, and a way to go about it in a scientific, systematic way."

Judith Green, Jennifer Romei, Benjamin H. Natelson. Stigma and Chronic Fatigue Syndrome. Journal of CFS, 1999 5(2).

A separate study by Green, Romie and Natelson made a formal study of stigma in CFS. The abstract states in part: Most subjects scored high on measures of stigma: 95% had feelings of estrangement, 70% believed that others attributed their CFS symptoms to psychological causes, 77% coped by using an educational strategy (disclosure) and 39% saw a need to be secretive about their symptoms in some circumstances. Most subjects (77%) were labeled as 'psychological cases' by one or more of the physicians (mean = 8) consulted, but of the 4 stigma measures, only disclosure was related to physician labeling. Such factors as duration of illness and unemployment, dissatisfaction with spouse, and symptom severity correlated significantly with measures of stigma. That many physicians were reportedly ignorant or skeptical of CFS (male more so than female MD's) may influence attempts of CFS patients to legitimize their symptoms by disclosure and lead to high rates of health care system use.

The Clinic of Angels

Hugs, Marilyn K
Clinic of Angels
5100 Burchette Road, Suite 1003
Tampa, FL 33647

The Clinic of Angels is a non-profit organization that is dedicated to providing medical treatment to those less financially fortunate members of the Chronic Fatigue Syndrome (CFS) and Fibromyalgia Syndrome (FMS) communities throughout the world.

The Clinic of Angels is dedicated to the recognition, advocacy, and eradication of CFS/FMS. In the meantime, due to the financial devastation incurred by the loss of careers and subsequent loss of adequate medical insurance, large numbers of CFS/FMS patients are under-treated or, often, untreated.

The Clinic of Angels goal is to reach out to severely financially strapped people with CFS/FMS so that they may significantly improve their quality of life by receiving treatment and prescribed medications from recognized CFS/FMS doctors that they cannot now afford.

The Clinic of Angels Members of the Board will validate and prioritize requests for medical treatment and negotiate with recognized CFS/FMS Specialists in the patients' areas. We will also negotiate with mail order Pharmacies for obtaining prescribed medications for those patients.

We are hoping that those that can will help support this effort. In addition to making donations by check to the address below, the Clinic of Angels will also receive 10-15% of all book sales made by using the Amazon.com logo located at the Clinic of Angels website located at http://www.geocities.com/HotSprings/Chalet/1835/

AMA Literature Online Free

from Maggie Wallace

For a "limited trial period" the full text articles from the Journal of the American Medical Association and associated journals are available online free:
http://jama.ama-assn.org/

This includes a site search engine, which is at:
http://pubsearch.ama-assn.org/search?action=FormGen=search.hts

A search under the term "chronic fatigue syndrome" brings up seven items. A search for "Fibromyalgia" brings up 12 items. There is some overlap in the articles produced by these searches.

There is no indication as to how long this trial period will extend for. -

Murphy's Laws of Humor For ME/CfIDS And Others

by Robert Hill, taleth@netcom.ca

THE LAW OF INVERSE ENERGY
The more energy it takes to complete a task the less energy there is available to do so.

COROLLARY #1
More work gets done on small tasks.

COROLLARY #2
Large tasks never get done because all of our energy is used on small tasks.

COROLLARY #3
The more one needs to get a task done, the less likely there is to be energy to accomplish the work. (Whatever energy there is, is spent on trying to get the task done, so nothing is left to actually do the work.)

THE LAW OF DIMINISHING CONSCIOUSNESS
The more one struggles to remain alert, focused and conscious, the more one loses concentration and consciousness. (See The Law of Inverse Energy)

COROLLARY #1
Most of our important work gets done while we are unconscious.

COROLLARY #2
The only way to get any rest is to try to work.

COROLLARY #3
The normal state of my life is to be unconscious.

THE LAW OF DYNAMIC HEALTH
The more energy I put into healing myself the more my health breaks down. Therefore the normal state of dynamic health for me is a condition of breakdown. By deduction then, I am in normal health and everyone who does not have ME is unhealthy.

Corollary #1
If I am in a state of normalcy and my doctors and therapists are in a state that is unhealthy, then they are trying to make me sick.

COROLLARY #2
If I break down when I try to heal myself then the healthiest thing for me to do is nothing.

COROLLARY #3
If my state is both normal and healthy then why am I being told by unhealthy people that I need to fix myself? For that matter why am I listening to unhealthy people?

THE LAW OF MEDICATION:
The more I wish to be able to function in a public world the more pills I must take. The more pills I take the more side effects I have. The more side effects I have the less able I am to function in a public world.

COROLLARY #1
Without pills I am unable to function and the therapist prescribes medication to enable me to function. With medications I suffer side effects but I am supposed to be able to function. Some forms of dysfunction are more acceptable than other forms.
Being doped on pills is a normal, acceptable, and healthy way to live and heal.

Chemical Sensitivity

Plumbing Contamination
by Cyndi Norman

If you're stuck with incoming PVC pipe, I would filter drinking and shower water at the facet, not at the place where the water enters your house (though you can do that also). PVC does leach into the water. If all your PVC pipe is outgoing you personally are safe, once the glue dries, but your local water ways are not.

It's really hard to mix and match pipes, but if you can, I would. I won't allow any PVC pipes in my home. My plumber agrees...he hates the glue. This makes it far more difficult to put in the drip watering system I need but I will not give in and take the easy route, using the materials everyone gives directions for and includes in prefab kits.

Venting Cooking Gases
http://www.geocities.com/RainForest/6847/
by David Wimberly
Citizens' Task Force on Environmental Sensitivities and Health of Nova Scotia
mailto:schweit2@ix.netcom.com

There is no really safe way to remove the gases for cooking with natural gas. No person should cook with gas, particularly none with environmental sensitivities, MCS, asthma or respiratory illness- or at risk of developing these, which includes just about everyone else. It particularly concerns women and children.

Even overhead vents that vent directly outside are not effective when cooking with gas although it is your best protection when cooking electrically. So get an electric stove/range and also get the largest and most powerful overhead vent that vents directly outside that you can buy. The vent should be 3" wider on each side of the stove that the stove is. The vent should extend to directly over the front edge of the stove (to be as deep as the stove is). And the vent should be no more than 18" to 24 " above the stove top to actually be effective. And it absolutely must vent directly outside - no filter of any form is effective as they will fill and clog in a matter of hours of use. I know this will seem extremely large and low, but that is actually what is needed for it to be effective, even for electric ranges.

If You Really Must: Best Practices for Gas

Message from Meredith Dixon on Thursday, 30 Sep 1999 22:01:29 -0400

Adverse effects of home and water heating with gas can be lessened considerably by putting the furnace and water heater in a separate building downwind of the house with underground connections.

Failing this, putting the furnace and water heater in a separate sealed room with an outside air intake into the room and venting the room itself and all appliances up a chimney that extends above the roof line will result in a substantial lessening of harmful effects.

Both furnace and water heater should also be state-of-the-art totally sealed units with separate outside air intakes ducted directly into their combustion chambers and forced exhaust via automatic fans. No side venting should ever be allowed, despite claims of gas purveyors. These practices are recommended as best for all combustion appliances indoors and are likely to increase the health of every individual, even if you are not currently aware of any harmful effects.

Still it is safest to not have any combustion at all inside the house. And forced hot air systems seem to have more associated health problems than other systems.

Looking for People with MCS and FM/ME

This article omitted from web archives

Want to Help with Future Research Studies?

I need people with FM and ME to provide statistical data for future research studies. The studies will examine medical, legal and other issues pertaining to FM and ME. The more data I can collect, the more relevant the studies will be.

If you are interested in becoming part of these studies, please contact Bonnie at (604) 448-1465.