Volume 15 Summer 1999

1. MEBC News
   1. Annual General Meeting October 23rd, 1999
   2. Thanks for the Donations and Support
   3. Help! We Need It - You Need It
   4. President's Message
2. Judges Treat CFS as Multiple Sclerosis
3. Parliament Debates on M.E.
4. Occupational Therapist With M.E.
5. Physician's Column - Part 2
6. Isoprinosine(R) Clinical Study Shows Promise for Chronic Fatigue
7. Computer E-mailing Lists
8. Legal Corner
9. Yes, ME People Can Laugh
10. Chemical Industry Studies Health Effects
11. Medscape
12. Medical Racism
13. The Autonomic Nervous System in Functional Bowel Disorders
14. On A Lighter Note
15. Demonstration of Delayed Recovery From Fatiguing Exercise in Chronic Fatigue Syndrome
16. Measuring Disability
17. Definition and Criteria for ME/CFS Diagnosis
18. Lecture by Dr. Scott
19. Books
20. Brain Imaging Discussions

MEBC News

Annual General meeting for October 23rd

It is that time again the AGM will be October 23rd 1999, at the New Westminster Library.at the courner of 6th street and 6th avenue, at 1:pm. Downstairs in the auditorium. We will be electing a new board and voting to raise the annual membership from $15 to $20.Please consider running on the board it needs the help and M.E. people need the assistance.

Thanks for the donations and support

The M.E.B.C. board would like to thank all the people who have sent in their memberships and even managed to give many donations, please keep the money coming so we can keep getting things done. We are also investigating other sources of funds so we can do even more to help the M.E. community.

HELP! WE NEED IT - YOU NEED IT!

We have a long list of things that we need help with. By helping us, you help yourselves and everyone else in the ME community. Please seriously consider it, even in a small way, as it will enable MEBC to accomplish more. Most of the volunteer work can be done in the convenience of your own home. Any amount of help would be appreciated. Much of our work is done through the Internet and by phone to allow volunteers to function on their own times.

We need help with Board Members who can attend most meetings;Committee Members (to help on projects sponsored by MEBC like the Health Centre;) and Support Group Leaders for various cities and to help with current leaders.

President's message

Dear ME sufferers:

Every person who has confronted ME, whether as a person with ME, or as a caregiver, or friend of a person with ME, has a unique special story to tell. Some parts of the story may be tragic, but others are uplifting and positive. Activities of daily living which are taken for granted by most, are a struggle and a heartbreak for most people with ME, people that do not have this illness could not even try to imagine what it could be like for us. If we all work together, we can try to defeat ME and related disorders. Please use the information in this newsletter to help yourself and others. Share it with your friends, physicians and anyone you feel may in some way help our cause. We are facing an up hill battle, to survive this illness, we must take an active role, (within our limitations), if we hope to defeat ME sooner rather than later. Please help us by taking that first step, no matter how slow our progress is, it is better than not making any progress at all.

Sincerely,
Tom Schweigert, President

Judges Treat CFS as Multiple Sclerosis

In the March/April 1999 issue of the CFIDS Chronicle (p. 11), the CFIDS Association of America (CAA) reported on a decision by a New Jersey (USA) Administrative Law Judge in which he compared the symptoms of a disability claimant with CFS to be equivalent to those of a person with multiple sclerosis.

In the U.S., applicants for federal disability benefits must usually appeal negative decisions at least twice. Following a second denial, they may request a hearing before a judge. These particular judges are called Administrative Law Judges.

Because the Social Security Administration does not currently include CFS in its list of illnesses, a Social Security adjudicator who finds in favor of a patient with CFS must find another illness with which to classify the claimant's symptoms in order to show the disability. This illness must be considered to be a "medical equivalent" to the symptoms with which the claimant presented his or her case.

The CAA has made a copy of this decision available to Co-Cure, and it is appended below. The identity of the claimant is not known to either

The claimant filed an application for a period of disability and disability insurance benefits under Title II of the Social Security Act. A hearing was held in Newark, NJ on November 5, 1998. The claimant was

The issue is whether the claimant is disabled as defined by the Social Security Act. Having reviewed the evidence, I have concluded that the claimant has been disabled since July 9, 1996.

The claimant alleges that she is disabled due to the following condition(s): chronic fatigue syndrome. She has met the insured status requirements of the Act and is fully insured through the date of this decision. The claimant has not engaged in substantial gainful activity since July 9, 1996. The evidence reflects that the claimant has at least one impairment which more than minimally restricts his ability to work...

The Social Security Administration has taken a position on the evaluation of CFS. The Agency recognizes that CFS is a "...systemic disorder consisting of a complex of variable signs and symptoms which may vary in duration and severity. The etiology and pathology of the disorder have not been established. Although there are no general accepted criteria for the diagnosis of cases of CFS, an operational concept is used by the medical community. There is no specific treatment, and manifestations of the syndrome are treated symptomatically.

In reaching a conclusion that the claimant's impairment equals Listing 11.09 (Multiple Sclerosis)... The introduction to the neurological listings adjudicators are instructed to obtain "a description of fatigue considered to be characteristic of multiple sclerosis," and obtain ... evidence that the system has actually become fatigued.

These signs and symptoms are virtually the same as the signs and symptoms of Multiple Sclerosis. Accordingly I find that the claimant's impairment equals Listing 11.09.

My conclusion is supported by testimony of the medical expert. Therefore, based on the evidence of record, I conclude that the claimant has been under a disability as defined in the Social Security Act since July 9, 1996.

It is the decision of the Administrative Law Judge that, based on the application filed on December 12, 1996 (protective filing date), the claimant is entitled to a period of disability commencing July 9, 1996 and to disability insurance benefits under sections 216(i) and 223, respectively, of the Social Security Act.

J. Krutick Barlow
United States Administrative Law Judge

Parliament debates on M.E.

Mr. Mac Harb (Ottawa Centre, Lib.) moved:

That, in the opinion of this House, the government should recognize: (a) multiple chemical sensitivity, chronic fatigue syndrome and Fibromyalgia as illnesses that have the capacity to cause disability; and (b) those suffering the disabling aspects of these diseases require protection and a strong moral commitment to their well-being....

Mr. Mac Harb: Mr. Speaker, I rise today to speak on a motion of critical concern to all Canadians. Multiple chemical sensitivity, chronic fatigue syndrome and fibromyalgia affect between 6% to 15% of the Canadian population. Of those affected approximately 1% to 2% are so severely debilitated that they require hospitalization. This is a large number of Canadians that need our attention. I will elaborate on these illnesses and their effects on Canadians....

The exact cause of chronic fatigue syndrome is not yet known. Current etiological theories proposed are neuroendocrine dysfunction, viruses, environmental toxins, genetic predispositions, head injuries and stress. The disease is more prevalent in women than in men.

Fibromyalgia on the other hand is a painful muscle disorder in which the thin film or tissue, myofacsia, that holds the muscles together becomes tightened or thickened causing pain. It is also known as fibrositis. This disorder shares many of the same symptoms as chronic fatigue syndrome and is also more common in women than in men.

The sad truth about these illnesses is that they destroy not only the health of those they afflict but also affect the lives of their families. Imagine your child being rendered bedridden by allergic reactions to the new carpeting in his or her school or your spouse or companion becoming disabled after his or her office has been renovated. These are the realities of people affected with multiple chemical sensitivities....

The suffering of these people is real. This fact is acknowledged by Revenue Canada, the Canada Mortgage and Housing Corporation, the College of Physicians and Surgeons in Alberta, Saskatchewan and Quebec, the Women's College Hospital in Toronto, the University of Toronto, Dalhousie University medical school in Halifax, the Alberta supreme court, the Peel and Waterloo school boards in Ontario, as well as the World Health Organization and the U.S. Centre for Disease Control. All of these organizations recognize these illnesses as ones that deserve our most attention....

For example, Canada has 25 doctors in environmental medicine. They are medical doctors who are familiar with these illnesses and know how to treat them. That compares with 1,400 licensed practitioners in the United States. Clearly we have an acute shortage of physicians who are trained to treat these devastating illnesses....

Mr. Speaker, I would like to share the remainder of my time with the Minister of National Defence who has a few comments on this issue.

Hon. Arthur C. Eggleton (York Centre, Lib.): Mr. Speaker, I rise in my capacity as a private member on this occasion. I do so to very strongly support my hon. colleague who has so eloquently spoken about the difficulties and challenges faced by so many people in our society as a result of various environmental illnesses. These include multiple chemical sensitivity, chronic fatigue syndrome and Fibromyalgia....

This motion asks that chronic fatigue syndrome, Fibromyalgia and multiple chemical sensitivities be recognized as illnesses by the federal government. It is not complicated. There should be no doubt that these environmental illnesses have the capacity to disable Canadians, to rob them of their livelihood and their ability to lead a normal lifestyle.

This motion will ensure that many Canadians suffering from these illnesses do receive equitable treatment when they apply for various disability benefits under existing federal support programs.

Motion No. 468 asks that there be a harmonization in the way eligibility criteria are applied to federal disability support programs. Currently federal programs apply different eligibility measurements from one program office to the next within a department. The result is a checkerboard of vastly different decisions for applicants who have the same degree of disability for the same illness. It also creates a tremendous amount of frustration and antagonism, and whatever the situation is, whoever the patient is, it just makes it a lot worse. ...

One point about Private Members' Business that is uplifting is that we can actually hear a minister talk to an issue rather than being constrained by a party position. Debate very often is oriented to an issue and we do not have to hear battles back and forth about one party saying this and another saying that. As individual members of parliament, elected from wherever in the country, we can defend a position that we think is critical.

To include these three diseases and make the people eligible for pensions validates the suffering of people. They are not depressed for nothing. They can go to the doctor who can tell them what is going on, who can help them out or recommend other areas of medicine. This could encourage more research into an area where there is not enough.

More and more the newer research indicates that low levels of toxins affect individuals more than we thought. Low levels of combinations of toxins have more effect than we expected them to have. We do not have a lot of information on it, but we do know that it affects people. It limits their lives and their ability to work....

Because MCS, CFS and FM are not considered disabling illnesses at present, they are often misdiagnosed. Without recognition, sufferers are unable to be considered for disability benefits and treatment. It also means that we are lagging behind in research for determining a cause for these diseases and a consequential treatment. ...

We have, as a government, taken some actions which demonstrate the concern about the growing number of environmental hazards. The Bureau of Chemical Hazards concentrates on the effects on human health of chemical and biological agents in the environment. The bureau has recognized the need to study not only air quality but also personal exposure to airborne contaminants.

We have an environmental health directorate at Health Canada and an office of environmental health assessment which deal specifically with environmental health risks. Last Thursday the Minister of the Environment and the Minister of Health announced the first phase of research projects under the toxic substances research initiative. This initiative responds to the need to have sound scientific research in order to define and reduce the health and environmental effects of toxic substances in Canada....

We have recognized that there is a link between environmental factors and health. What Canadians who suffer from multiple chemical sensitivity, chronic fatigue syndrome and Fibromyalgia experience is a chronic and acute reaction to environmental factors against which the majority of the population are able to defend themselves.

We have devoted resources and energy to dealing with chemical environmental triggers at the level considered toxic. We have mechanisms for dealing with the substances, but we cannot help the people who suffer from even the slightest exposure to them. Sufferers are often misdiagnosed as having psychological disorders or are told that the source of their discomfort cannot be identified....

I wish this motion were votable. I know that the Minister of Health recognizes the importance of this issue and is prepared to act on it whether or not this is endorsed by the House.

We need to look at some specific things. We need to look at some pilot projects to set up other treatment programs in Canada. We have the expertise. We should be taking care of these issues in our country...

Most of the people who suffer from these things go through a great period of time in which they have various doctors and others tell them it is all in their head, that it is psychological, that it is psychosomatic, et cetera. Even when elements of the medical community become persuaded that there really is something going on that is organic and not just psychological, then they find that they cannot get treatment. Even having crossed over the bridge of recognition, once they get there, there is nothing there for them in terms of treatment...

That Motion No. 468 be withdrawn and the subject matter be referred to the Standing Committee on Health....

(Motion agreed to)

Occupational therapist with M.E.

This is a brief overview, basically the "Reader's Digest" version, of my years with myalgic encephalomyelitis, and my journey towards recovery. In the space allotted to this article, I wish I were able to fully convey the impact M.E. had upon my life. Some areas I was unable to elaborate upon were how the illness affected relationships with family and friends, my never-ending frustration with the medical community, my struggle to accept life with M.E. rather than trying constantly to fight it, and the importance of supportive caregivers.

I had M.E. from 1984- 1992. I was almost 14 years old when I came down with a nasty case of mononucleosis during which time I received the MMR (measles, mumps, and rubella) vaccination. My energy level, my immune system, and overall health, were never the same following after this. I pressed on throughout my high school years. In grade 12, determined to win as many scholarships as possible, I was vice-president, on the grad committee, played a lead role in the school play, maintained (as always) top honor role status in enriched classes, had a part-time job, and enjoyed music lessons. My entire identity rested in what I could do. My major frustration became my body seemingly inability to keep up; I was constantly tired (fell asleep in class numerous times), achy all over, had difficulty concentrating (therefore had difficulty maintaining my marks), prone to illness, and exercise only seemed to make matters worse. In the spring of 1988, I simple could not get out of bed. I missed the last 2 1/2 months of my final year, and without having written a single exam, was allowed to graduate based upon pass merit.

I thought I had mono again. This time I rested. I did not start my university education until the spring of 1989, but found again that I could not manage. Unable to write my exams, I had to drop out. This was serious - what was wrong with me?

In the summer of 1989, Dr Styver at UBC hospital diagnosed me with the Chronic Fatigue Syndrome (a label I hate due to its pejorative undertones that one is either lazy, crazy or somatising psychological stress). I was told to rest for a year (which I did not because as soon as I felt somewhat better, I attempted university again, only having to drop out again). In the next four years I saw every specialist possible (anti-depressants were the numero uno answer for everything), tried every dang herbal remedy my mother's well-meaning friends in their multilevel schemes promised would heal me, and continued to feel lousy.

My mom had to become my full-time caregiver. She would bring meals to my bed, wash my hair because I was unable to, and did whatever else needed to be done. I was basically sleeping up to 20 hours a day, and my awake periods were spent dragging my self from one couch to another. Often I would fall asleep on the stairs in my feeble attempt to get back to bed.

My journey towards recovery started when I, with my mother's aid, focused on my immune system. We used a holistic approach - the physical, psychological, and environmental. To this day I do not believe there is a quick or "magic" cure. A holistic approach I believe is absolutely necessary. We tried everything possible to boost or rebuild my immune system. For example, we tried to eliminate dust from my room (books, feather duvet, stuff animals were cleared out), my mother told jokes to get me laughing (we got to the point where we believe laughter was the best and only medicine), and my diet was carefully monitored. Though a diet eventually seemed to be the nail on the coffin of my illness, I believe it was a process that brought me to the point of recovery in the spring of 1992.

For the past 7 years I have been well without any setbacks despite losing my 18 year old sister in the summer of 1992, followed by myself being in a severe accident a month later (So much for doctors saying my illness was linked to depression!). I do guard my health, but I have hiked the West Coast Trail (70 kms), roller bladed 21 kms a couple of times, ran my own cleaning business, and worked at a group home for people who are mentally handicapped. This year I completed my degree in occupational therapy (O.T.) from UBC (within the allotted 3 years). I am especially proud of this degree since it is within the faculty of medicine, an area I especially wanted to make a difference in due to my personal experience with the medical community. Occupational therapists serve to rehabilitate anyone who, through illness or injury, is experiencing difficulty in the areas of daily living, such as self-care, productivity, or leisure. (Occupation means the things people do, not just work). I believe occupational therapists are truly needed for people with M.E. since they can assist these people who have to undergo adaptations in their lifestyle due to this illness. For example, an occupational therapist can do a home visit and make recommendation regarding adaptive aids, energy conservation techniques, and ergonomics (fitting the job to the person rather than the person to the job). Occupational therapy is the most suitable career I believe that I could have chosen. It has the possibility of making a difference in the lives of people with ME where many health professional failed, and I hope that I can do just that. Thank-you for letting me share my story.

Michelle Penner Ferguson.

PHYSICIANS COLUMN

By Dr. Carruthers

PART 2 - INTERNET THERAPEUTICS OF M.E.

Another area of intense interest on the Internet is that of therapeutics. Discussions of new therapies often come with a lot of enthusiasm, but generally should be tested carefully by at least 3-4 independent investigations before their true worth can be ascertained. Any remedy worthy of a trial should be safe, and not have serious side-effects. If a remedy is safe and not too expensive, then of course it could be tried. My own experience with a wide variety of therapies put forward for the treatment of ME is that most of them help a few, but none that I have suggested or that my patients have initiated helps everyone who has tried it. If possible, remedies should be tried one at a time, keeping other aspects of the treatment as stable as possible while the new remedy is being tested. Since the beneficial effects are often not evident at first, an adequate trial- approximately 3 months at several gradually increasing dosage levels- should be completed before regarding a remedy as useless. Sometimes a beneficial effect will become evident only upon withdrawal of the remedy. Therefore the withdrawal should be carried out just as carefully and mindfully as the induction. This takes a long time to do well, but is worth the patience and effort this requires, since the alternative is confusion and/or a burden of many remedies, all of which remain untested, but taken 'just in case'.

No remedy should be relied on as a substitute for careful adjustments in your individual life-world ( your unique world as attuned to, experienced and acted upon), so that you can learn to avoid aggravating factors/actions and promote factors/actions which improve symptoms. Any part of this life-world can represent a remedy or an aggravator. Since your situation changes so much from day to day, you require a vigilant awareness to assess this adequately, something that you gradually learn over the time you live with this condition. Remember that improving your ability to cope with the illness can be just as valuable as curing it- in terms of individual well-being, symptom reduction and "getting on with life".

Isoprinosine(R) Clinical Study Shows Promise for Chronic Fatigue

AURORA, ONTARIO--Isoprinosine(R), an approved anti-viral pharmaceutical used to treat sub-acute sclerosing panencephalitis, has shown to be promising in the treatment of Chronic Fatigue Syndrome.

In a presentation made to the Neuro Immune Dysfunction Syndrome Medical Conference in Bethesda, Maryland, Dr. Byron Hyde of the Ottawa-based Nightingale Foundation described the results of his small clinical study into the treatment of patients with Isoprinosine(R) versus a placebo. His study demonstrated that Isoprinosine(R) appears to relieve the symptoms of this debilitating condition in some patients.

'I am happy with the results of our preliminary study of the treatment of chronic fatigue patients with Isoprinosine(R). I believe that this is a safe medication with the promise of improvement of the quality of life for some CFS patients,' stated Dr. Hyde, 'Some patients may even be able to return to work'

Isoprinosine(R) is distributed in Canada exclusively by Helix BioPharma Corp.'s subsidiary, Rivex Pharma Inc.

Contact:
Helix BioPharma Corp.
(905) 841-2300 ext. 232
(905) 841-2244
E-mail invrelations@helixbiopharma.ca

Computer E-Mailing Lists

We thought we would give everyone a brief list of some of the many groups on the Internet. Ask a friend or use the library for help getting connected:

Ablenet - "Able Networking brings together those interested in reaching beyond the walls of chronic illnesses such as Chronic Fatigue Syndrome, Fibromyalgia, and MCS through involvement in non-profit and for-profit endeavours on the internet. Topics of discussion include developing skills and abilities, networking, overcoming the systemic barriers to volunteerism or employment, starting and operating small businesses and non-profit groups, and establishing Internet websites and services."
CATHAR-M - Monthly magazine of personal health, intellect and creativity for the CFS/CFIDS/ME community
CDN-ME-FM - Canadian discussion list for M.E./CFIDS and Fibromyalgia
CFIDS-L - Political action discussion for CFS/CFIDS/ME
CFIDS-ORTHOSTATIC - E-mail list for patients with chronic fatigue and immune dysfunction syndrome who suffer from orthostatic intolerances including postural orthostatic tachycardia and neurally mediated hypotention.
CFIDSME-Activist - "To discuss activism with relation to the following illnesses: ME (Myalgic Encephalomyelitis or Encephalopathy), CFS (Chronic Fatigue Syndrome), CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome), REDD (RNaseL Enzyme Dysfunction Disease [positive RNaseL defect test]); as well as the allied illnesses: FMS (Fibromyalgia), MCS (Multiple Chemical Sensitivities), GWS (Gulf War Syndrome), Lupus, connective tissue disorders, and MS (Multiple Sclerosis); "
CFIDSME-Activist - list for activist issues
CFS-CARE - CFS caregivers private discussion
CFS-D - Similar to CFS-FILE described below; "contains some older articles, and special files used by the CFS-L discussion group"
CFS-DOC - Doctors discussion of CFS (private group for doctors)
CFS-FILE - Notices on updates to CFS-FILE e-mail database which contains many medical articles, newsletters, etc.
CFS-L - Patients' discussion of health and other issues; topics of discussion include medical treatments, disability benefits, coping, and other issues.
CFS-MED - Health professionals' discussion of CFS
CFS-NEWS - International electronic newsletter, emphasizes medical news on CFS
CFS-OPEN - Minimally moderated discussion
CFS-WIRE - News article exchange for editors of patient organization newsletters. Subscription open to all.
CFS-Y - CFS discussion for youths
CFSFMSEXPERIMENTAL - Discussion forum by and for CFS and FMS patients about experimental medical treatments for chronic fatigue syndrome and fibromyalgia where patients can share with each other; emphasis on individual experiences, rather than advocacy of any particular product or treatment.
Archives at http://www.onelist.com. (Type 'CFSFMSexperimental' in the 'Find a List' window, then do search for treatment you're interested in to get all digests in which someone posted a message about it.)
CFSMEexperiments - Discussion forum about experimental medical treatments for chronic fatigue syndrome and fibromyalgia.
Archives at http://www.onelist.com/
CFS_Newcastle - The University of Newcastle (Australia) has recently developed sophisticated CFS tests and treatment protocols. To help explain the work of the Newcastle CFS research team, a mailing list was created called "CFS_Newcastle," designed to be an announcement or "news" list (the e-mail equivalent of a newsletter) to explain the research findings with the use of articles written "in plain language." The latest news from the Newcastle CFS research team will also be posted to the list on a regular basis.
Co-Cure-HMC - Hosts meetings and conferences. Established for use by Co-Cure members and other interested parties as a private email list for short term meetings and conferences on issues pertaining to CFS and FM.
Co-Cure - No discussions; information list only. "Topics: treatment and diagnosis information for CFS, FM, or related conditions; scientific reports, trials, findings, opinions and publications; announcements of events, publications, media coverage, conferences, and meetings; notices concerning socio-political activism."
DISINISSUES - "Disability Benefits Insurance mailing list" "to discuss issues surrounding the processes of obtaining SSI, SSDI, and long-term disability; to exchange information and advice about applying for, appealing, and renewing disability insurance from private long-term disability insurers and the U.S. Social Security Administration;" "targeted toward patients suffering from CFIDS/M.E., Fibromyalgia, Multiple Chemical Sensitivities, Gulf War Syndrome, Post-Polio Syndrome, Multiple Sclerosis, Lupus, and other similar diseases."
FMS-Recovery - For anyone with an interest and belief in the possibility of recovery from the symptoms of FMS/CFS/MPS/MCS etc; all schools of thought welcome; focus on recovery not simply management of the condition; information to help you decide what you might like to incorporate into your recovery routine; aim of giving those with FMS answers about any recovery options; updated Frequently Asked Questions."
FIBROM-L - Fibromyalgia discussion
helpME_CFS - To provide information and support to people who have ME, CFS, CFIDS, FM or a related condition. Healthy people with interest in research into fatigue-related disorders, or carers and partners of sufferers also welcome to participate. Optimistic attitude to recovery encouraged.
Lyndonville News - To reach out to families dealing with CFS
May12 - M.E./CFIDS and Fibromyalgia list for organizing activities for May 12
ME Chat - an informal mailing list for people in the UK with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS).
ME-NET - Netherlands discussion on CFS/FMS/Lyme (mostly in Dutch)
ME-FMS-CAN - Canadian discussion list for ME/CFIDS and Fibromyalgia
NEURONTIN-L - Discussion group about the off-label use of Neurontin
Sasy-ed - List about medical and research issues pertaining to ME/CFIDS. "There are many similarities among the conditions ME/CFIDS, fibromyalgia, MCS (multiple chemical sensitivities), GWS (Gulf War Syndrome), PPS (post-polio syndrome), and sero-negative Lyme Disease. Consequently, discussion and information about all these conditions is welcome."
Sasyfras - CFIDS/M.E. discussion and support

Immunity Mailing Lists
Immune - "Discussion group about immune system disorders such as Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, Lupus, Candida, Asthma, etc."
m.incognitus - "Discussion group for patients with AIDS and CFIDS who suffer from secondary infections of m.incognitus and/or c.pnuemonia"
OPPT NEWSBREAK - "Toxic News for the Net"U.S. Environmental Protection Agency
Office of Prevention, Pesticides, and Toxics Substances (OPPTS)
Chemical Library
Washington, D.C.

Disability Mailing List
ADA-ACCESS list - ADA Disability Access Issues Discussion List

Chronic Pain Mailing List
Chronic_Pain - "Support resource for adults with problems resulting in chronic physical pain, with an emphasis on helping to cope and 'have a life.'"

Legal Corner

By Greg Steele

WHAT DOES IT MEAN TO BE DISABLED
One of the most difficult questions facing people suffering from a sickness or injury is whether or not they are disabled and therefore entitled to receive disability insurance benefits. Many people are surprised to find that there is no simple answer to this question and what's more that they are disabled for some purposes and not others.

The answer to the question is both a legal and factual one. To fully understand this complex issue, it is necessary to examine the source of the right to receive disability benefits. The entitlement to disability benefits arises either from a policy of insurance or a statutory scheme such as the Canada Pension Plan. In the absence of the policy or the statutory scheme, there is no entitlement. Therefore, one must examine the policy or statutory scheme to see whether the claimant has a right to benefits. If the policy or the statutory scheme does not say that benefits are payable unless certain conditions are satisfied, then it does not matter how sick or disabled the claimant is; they must satisfy those requirements before they will be entitled to any benefits.

While there is considerable similarity between policies and statutory schemes, there are often differences. For example most insurance policies provide that the insured is entitled to benefits if that cannot perform the material duties of the any occupation for which they are reasonably suited by reason of their education, training, or experience. On the other hand, the Canada Pension Plan provides that a person is disabled if they suffer from a sickness or injury which is "severe and prolonged". In the Canada Pension Plan, severe is defined to mean that the person is substantially unable to perform the material duties of any gainful occupation. The Supreme Court of Canada has held that the test of total disability is satisfied when the circumstances are such that a reasonable man would recognize that he should not engage in certain activity even though he literally is not physically unable to do so. In other words, total disability does not mean absolute physical inability to transact any kind of business pertaining to one's occupation, but rather that there is a total disability if the insured's injuries are such that common care and prudence require him to desist from his business or occupation in order to effectuate a cure; hence, if the condition of the insured is such that in order to affect a cure or prolongation of life, common care and prudence will require that he cease all work, he is totally disabled within the meaning of health or accident insurance policies.

In a Manitoba case, the Court was required to interpret the words in a policy of insurance that disability was to be determined having regard to the insured's skill and ability. The Court held that the "skill and ability" provision referred to the insured's skill and ability prior to the accident as otherwise it would be difficult, if not impossible, for anyone except a person rendered a complete vegetable to obtain payment of total disability benefits. The Court stated that the words "reasonably suited" and "having regard to his skill and ability" indicated that merely because an insured might be able to engage in some kind of occupation or employment, he is not thereby disentitled to total disability benefits.

In another Manitoba case, the Court of Appeal for that province held that "gainful employment" must be read in conjunction with "for which he is reasonably fitted". The test is not whether it is a job within his capability, but whether it is one for which he is reasonably fitted by what he has done before. The question of disability must be considered taking into account all "education, training or experience" to the time when the issue arises. A person may establish that he or she is totally disabled within the meaning of a policy of insurance despite the lack of a definitive medical diagnosis.

In a British Columbia case the insured displayed unresolved symptoms of feeling of coldness, excessive perspiration, lassitude, lack of energy, and recurrent diarrhea and his condition was progressively worsening. An endocrinologist suspected a hormone-induced tumor as the cause. The psychiatrist retained by the insurer believed the insured to have a neurotic personality. Notwithstanding the lack of a definitive medical diagnosis the Court allowed the insured's claim for declaration of entitlement to benefits.

The determination of whether or a person is disabled in any particular situation is often not an easy one to make. Medical evidence is always necessary but often by itself is not conclusive. Frequently, this must be supported by evidence of the claimant and his or her family members and friends who can corroborate that the person is not able to function on a basis that would allow them to work in a gainful occupation for which they are reasonably suited by reason of their education, training, or experience. Unfortunately, as important as this corroborative is, often insurance company representatives give it little consideration forcing the individual to resort to the courts to enforce their claim.

Yes ME people can laugh

This article omitted from web archives.

Chemical Industry Studies Health Effects

The Associated Press (c) 1998
By H. JOSEF HEBERT

WASHINGTON (AP) -- The chemical industry, often at odds with environmentalists and health advocates, committed $1.2 billion Wednesday for a six-year program of independent research into how chemicals affect health and safety. The research initiative brought praise from Vice President Gore and other senior administration officials as well as from environmentalists who said the studies, however, must be totally objective. The results of the research will be peer reviewed and made public "even if it hurts,'' said J. Lawrence Wilson, chairman of Rohm & Haas Co. promising to "`let the chips fall where they may.''

The wide-ranging program includes an ambitious project that earmarks $100 million into general research into 10 priority areas. These include research into pathways through which humans are exposed to chemicals, risk of disease from exposure, how health data from animals relates to humans and better understanding of the relationship between chemical exposure and cancer. "These are fundamental questions that must be better understood so our industry can move forward,'' said Arthur Sigel, chairman of the Chemical Manufacturers Association, the industry trade group.

While the initiative for new general research, which will provide money for a host of studies in 10 priority areas, was purely voluntary, the broader programs, which will account for more than $1 billion, came about in part as a result of prodding from government and environmentalists

The industry said it would spend $500 million over six years to test the toxicity of the 3,000 most widely used chemicals. Gore called for such studies in an Earth Day speech last spring after the Environmental Defense Fund began pressuring the industry on the subject. An additional $600 million is expected to go toward screening as many as 15,000 chemicals to determine whether they pose a threat to human hormonal systems, leading to cancer or infertility.

An Environmental Protection Agency advisory panel last October urged such an aggressive testing program to determine whether chemicals affect human estrogen levels, leading to cancers and neurological and fertility problems.

Nevertheless, the $180 billion industry's commitment of both money and other resources was applauded by federal environmental and health officials as well as environmentalists. "More research, more information, better science is always positive,'' said EPA Administrator Carol Browner. While the agency wants to monitor the program, she said she's confident the research will be independent and objective. "I am very impressed with what I see,'' said Kenneth Olden, director of National Institute of Environmental Health Sciences, who praised the industry's research priorities. "All of these are high risk issues,'' agreed Robert Huggert, vice president of research and graduate studies at Michigan State University and a former EPA official in charge of research.

Lynn Goldman, former EPA assistant administrator for pesticides and toxic substances and now a visiting scholar at Johns Hopkins University, called the industry initiative ``a truly very significant commitment of resources.'' Most important, she said, is that the funding is not focused on ``fire fighting'' but at trying to answer the long-term questions that have puzzled health experts and the industry about the relationship of chemicals and public health.

About two-thirds of the $100 million for general research is expected to go to the Chemical Industry Institute of Toxicology, an independent research institute located in Research Triangle Park, N.C. Although formed in 1974 by the chemical industry, its work is widely respected for independence. The other one-third will be awarded to independent research scientists. Industry officials said the research will be open to peer review and public scrutiny. ``The integrity of this research must be unquestioned,'' said Wilson, the Rohm & Haas chairman, who also heads the CMA's research committee.

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Medical Racism

From: Dr. Ellen Goudsmit

To: Doctors and scientists familiar with the literature on CFS and willing to challenge ignorance and prejudice.

I think the editorial below deserves a response from medical professionals: while reading it, I felt I was confronted with medicine's equivalent of racism. This must be the most biased, prejudiced and unscientific article I have ever read.

Letters from patients would be counterproductive.

Henningsen, P and Priebe, S. Modern disorders of vitality: the struggle for legitimate incapacity. Journal of Psychosomatic Research, 1999,

Editorial covering disorders like CFS and multiple chemical sensitivity, which appear to have no obvious explanation but where the patients "persist" in attributing the complaints to a physical cause. The conditions in question "are not part of the official classification of diseases" [Ed. note: CFS and ME are listed in ICD-10] - According to the authors, the disorders are an "expression of disturbed relations of a person to his or her environment." Focusing on chronic fatigue, the authors note that many doctors prefer "psychiatric explanations". They go on to state that despite their tiredness, patients are fighting for legitimacy, particularly via self-help groups, politics, the law, the media and the Internet. Increasingly this campaign "by-passes both medicine as a science and medical institutions" [Ed. note: The reference here is a review article by Wessely. The authors may not know that medical journals outside Germany do not give access to patients, regardless of whether they have CFS or cancer. In the UK, patient groups have helped to organize and fund postgraduate seminars at hospitals and medical schools. Patients are regularly consulted by various institutions, and several sit on the Chief Medical Officer's Working Party. In recent years, only the Royal Colleges Working Party refused to communicate with them] The authors suggest two reasons for the "fierce" campaign for legitimacy. The first is the wish to avoid the stigma of mental illness. The second is the need to avoid the illegitimate part of the complaint: the underlying meaning, e.g. not wishing to do something. However, tiredness used as an excuse is not acceptable to the patient. They point to an apparent paradox: on the one side, the patients claim to be very tired but on the other, they are capable of taking part in the campaign. This must not be a sign of conscious simulation, though it's understandable if one recalls their goal, namely, legitimacy of the incapacity. [Ed. note: there is obviously a confusion here between CFS and TATT as well as an assumption that tiredness is the main source of disability in CFS]. The authors also link CFS with unattainable goals at work, noting the importance in this culture of professional success. They wonder how one would have diagnosed CFS in the 'hippie' generation when pleasure was more important than professional performance [Ed. note: it was called ME.] Finally, they suggest that proponents of disorders like CFS and MCS are challenging the biomedical model, by proposing new theories which are incompatible with current toxicology, or by by-passing evidence-based medicine completely via the courts [Ed. note: no reference given]. Accepting the accounts of incapacity as valid may help to understand the behavior of patients and thus improve communication. [Ed. note: The authors ignore all evidence implicating an organic etiology, apparently assuming that there is no medical evidence for the existence of disorders like CFS. This article appears to be based almost entirely on ignorance concerning CFS and MCS, misinformation and personal prejudice. It may undermine understanding and add to the stigmatization of patients. Scientists and mental health professionals who are familiar with the literature may find this article grossly offensive]

The Autonomic Nervous System In Functional Bowel Disorders.

Gervais Tougas G McMaster University, Hamilton, Canada. Canadian Journal of Gastroenterology 1999 Mar;13(A):15A-17A NLM citation: PMID: 10202203

Digestive Diseases Research Program, Division of Gastroenterology, McMaster University, Hamilton, Canada. tougasg@fhs.mcmaster.ca

Communications along the brain-gut axis involve neural pathways as well as immune and endocrine mechanisms. The two branches of the autonomic nervous system are integrated anatomically and functionally with visceral sensory pathways, and are responsible for the homeostatic regulation of gut function. The autonomic nervous system is also a major mediator of the visceral response to central influences such as psychological stress. As defined, functional disorders comprise a constellation of symptoms, some of which suggest the presence of altered perception, while other symptoms point to disordered gastrointestinal function as the cause of the symptoms. A growing number of reports have demonstrated disordered autonomic function in subgroups of functional bowel patients. While a number of different methods were used to assess autonomic function, the reports point to a generally decreased vagal (parasympathetic) outflow or increased sympathetic activity in conditions usually associated with slow or decreased gastrointestinal motility, while other studies found either an increased cholinergic activity or a decreased sympathetic activity in patients with symptoms compatible with an increased motor activity. Under certain conditions, altered autonomic balance (including low vagal tone and increased sympathetic activity) may alter visceral perception. Autonomic dysfunction may also represent the physiological pathway accounting for many of the extraintestinal symptoms seen in irritable bowel syndrome patients and some of the frequent gastrointestinal complaints reported by patients with disorders such as chronic fatigue and fibromyalgia.

On A Lighter Note!

by Jacqueline Warren

I sure miss going to the retired Dr. Carruthers on Galliano Island. The trip there was very tiresome, but waiting for our appointment time in his beautiful serene home overlooking the ocean and meeting so many people with the same illness as me was very enlightening and so very supportive. From one day of waiting at Dr. Carruthers, I would learn more about this disease than any book I could read.

One Saturday a while back, while waiting for my appointment time, I met the most fun people. We shared our lives about our illness. One particular story stands out in my mind. There was a very humorous woman there, she went on to tell of her difficult cognitive days that ME brings on.

She started off by telling us of her searching the house high and low for her sneakers only to find them crispy cool in the fridge. We were all giggling, but when she went on to tell of the time when her and her husband were traveling through a toll booth with a stop gate, and what she did next, well we were laughing historically. Her husband was driving. The remote for there garage was kept on the dash board. She had instinctively picked up the garage door opener remote and with arm stretched out pointed it at the stop gate. The toll booth attendant looked weirdly at them and her husband said to the attendant while she pressed on the remote "Don't worry it's only set on stun!"

There were about 6 of us who travelled back on the one hour ferry ride back to Vancouver that day. There was another woman there who told of how the insurance companies had spied on her, and hearing her stories it got some of us rather paranioid as we also have insurance claims pending. Well there we were haveing a wonderful laughing time, and after hearing several different stories about the insuarance companies and the detectives they send, we all started to look around for such a detective. The realization that the odds of one of us being followed out of the six became aparent. We proclaimed that one of the spies must be here right now on this Ferry! Oh we were sure. We started to share what we knew about how samll cameras have become and how in the button of an insurance representative shirt there could be a camera. Well as we sat in the Ferry cafeteria we panned the room looking for who might be such a fellow. Well there was this guy sitting there drinking coffee. He was alone, about 40, slim and suited the traveling spy profile. We all eyed him curiously, each of us looking at him in turn. He of course looked at us as we were all woman looking at him. "Oh don't look at him too much one of us would say". Then we started looking at him methodacly looking for the camera on the button on his shirt. This poor man what if he is not the insurance spy. Well as we talked more and more about the insurance sly tactics and spies. We started to look at him with a mean look. We wanted to go tell him off.

Anyway thinking back on this experience makes me laugh. Living with ME is hard. But being able to laugh about what we go threw makes it easier.

Demonstration Of Delayed Recovery From Fatiguing Exercise In Chronic Fatigue Syndrome.

Authors: Paul L, Wood L, Behan WM, Maclaren WM Journal: European Journal of Neurology 1999 Jan;6(1):63-69

Patients with the chronic fatigue syndrome (CFS) complain consistently of delay in recovery of peripheral muscle function after exercise. The purpose of this study was to try to confirm this observation. A fatiguing exercise test was carried out on the quadriceps muscle group of ten patients and ten control subjects. The test consisted of 18 maximum voluntary contractions (MVCs) with a 50% duty cycle (10 s contraction, 10 s rest), and the force generated by each contraction was recorded using a KinCom dynamometer. This was followed by a recovery phase lasting 200 min in which quadriceps strength was evaluated at increasing intervals, and a follow-up session at 24 h post-exercise involving three 10 s MVCs. Throughout the exercise period, the MVCs obtained from the control group were significantly higher than those of the patient group (P = 0.006), but both groups showed a parallel decline in force over the 18 contractions, in keeping with a similar endurance capacity. Recovery was prolonged in the patient group, however, with a significant difference compared to initial MVCs being evident during the recovery phase after exercise (P = 0.001) and also at 24 h (P < 0.001). In contrast, the control group achieved MVCs which were not significantly different from initial values during the recovery phase, and maintained these at 24 h. These findings support the clinical complaint of delayed recovery after exercise in patients with CFS. Copyright 1999 Lippincott Williams & Wilkins

Measuring Disability

From: "Linda Clement"
Editors note: This is a summarized chat group session I think the principles are valuable for measuring the effects of a new treatment regime.

When I started oral interferon last July, I wanted some concrete way of keeping track of my progress because I knew that, if all I tried to keep track of was how well I felt subjectively, I'd probably say I was feeling better than I really was because I would WANT to feel better so badly. I checked out a bunch of different scales,...but none of them seemed to fit me. What I finally did was to create my own scale of measurement for each of my symptoms. ...we could solve the problem of finding a scale to fit everybody by having each of us make up our own scales. We could measure them against each other by the percentage of change in each person's own scale.

Linda's Symptom Scales

Fatigue: 0 1 2 3 4 5 6
0) none
1) Fatigue is intermittent. Can be physically active (walking, moving around) for 2-3 hours before exhaustion. Can sit up without difficulty for several hours. Can write, type, etc. from reclining position without difficulty.
2) Constant feeling of mild to moderate fatigue. Can be physically active for 1 hour before exhaustion. Can write, type, etc. from reclining position without difficulty.
3) Constant feeling of moderate fatigue. Can be physically active for 15-30 minutes before exhaustion. Can sit up for 30 min. - 1 hr before exhaustion. Small motions (typing, writing, etc.) from reclining position not difficult for 2-4 hours at a time.
4) Constant feeling of moderate to severe fatigue. Can be physically active for 5 minutes before exhaustion. Small motions not difficult for 30 minutes - 1 hr; can go on longer with increasing feeling of fatigue. Cannot sit up for more than a few minutes before exhaustion.
5) Constant feeling of severe fatigue. Cannot walk or use large muscle groups without trembling and weakness. Some trembling and weakness with small motions, but still doable: can grip pen and write for several minutes with difficulty, can type but make a lot of errors.
6) Constant feeling of severe fatigue. Unable to walk more than approx. 10 feet without having to stop due to muscle weakness and trembling. Small motions difficult to impossible: very difficult to grip a pen, cannot comb hair without stopping to rest several times. Difficult to hold head up. Constant trembling in all muscles when not at rest.

Stomach pain: 0 1 2 3 4 5
0) none
1) Minor pain, easy to ignore.
2) Moderate pain, interferes somewhat with concentration.
3) Severe pain, cannot concentrate.
4) Very severe pain, especially if I move or am jarred.
5) Extreme pain, unable to move at all.

Irritable Bowel Syndrome: 0 1 2
0) None.
1) Moderate: intermittent cramping, lasts for less than 1 minute per episode
2) Severe: extremely painful cramping, ongoing for at least 15 minutes, accompanied by vomiting and/or diarrhea.

Muscle pain: 0 1 2
0) None.
1) Mild, easy to ignore.
2) Moderate, interferes somewhat with concentration.

Joint pain: 0 1 2
0) None.
1) Mild, easy to ignore.
2) Moderate, interferes somewhat with concentration.

Dizziness: 0 1 2 3 4 5 6
0) None.
1) Slight dizziness when standing.
2) Moderate dizziness when standing, but do not fall; mild dizziness when walking or sitting up.
3) Moderate dizziness when walking; can walk, but cannot stand. Very dizzy after sitting up for 10 minutes.
4) Extreme dizziness when walking; can walk for short distances if necessary (100 feet); cannot sit up without extreme dizziness.
5) Extreme dizziness when walking, can only walk for 10-20 feet without falling, tend to grab onto chairs, railings to keep from falling. Cannot sit up unsupported without falling.
6) Cannot walk because of dizziness; can crawl. Cannot sit up. Feel constantly dizzy in all postures. Raising head from pillow causes dizziness to get worse.

Cognitive dysfunction: 0 1 2 3 4
0) None. Can read in French, Spanish, archaic Provencal with use of dictionary. Can think in two languages at once. Can write fiction and poetry. Can do arithmetic in head. Can read graduate-level textbooks on unfamiliar subjects with little or no difficulty. Can read medical abstracts with little or no difficulty. Can read aloud while reading silently 5-6 lines ahead. Can think on 2-3 tracks at once without difficulty. Can decipher crypto-puzzles without writing anything down. Near-photographic memory for text. IQ scores vary 158-168.
1) Can read all English without difficulty; other languages very cumbersome. Can think in 2 tracks at once with some difficulty. Cannot write fiction well; can still write non-fiction. Some difficulty with vocabulary, tend to be forgetful. Can balance checkbook with calculator. IQ scores 130-161, variance depending on length of test okay for first hour or so, after that start to lose concentration.
2) Cannot read heavy fiction without great difficulty; can still read light fiction and non-fiction if not too many unfamiliar terms. Can watch TV with no difficulty (at levels 1 and 2, am usually bored by TV). Vocabulary problems tend to forget words. Difficulty maintaining conversation longer than 15 -20 minutes can't remember what was said. Can balance checkbook with calculator, but tend to make mistakes & have to repeat 4-5 times to get accurate accounting. Can use spreadsheet program with more success, but still make mistakes by forgetting items. IQ score 145 when allowed to take tests in short sections with 24-hour breaks in between.
3) Difficulty with light fiction. Can read simple, brief nonfiction, such as news items, with some difficulty. Occasional difficulty understanding TV. Difficult to maintain conversation for more than 2-3 minutes because of forgetfulness. Tend to interrupt people a lot because I can't follow their conversation and my responses at the same time. Cannot balance checkbook or do other arithmetic, even with calculator. Can use spreadsheet program with extreme difficulty and unreliable accuracy. Have never taken IQ test at this level of symptoms.
4) Difficulty with all reading. Cannot read fiction at all. Can read very short nonfiction (e.g. news items) with difficulty. Difficult to follow TV. Difficult to maintain conversation. Difficult to remember anything for more than a few seconds. Tend to forget what day, sometimes what month, it is. Have difficulty remembering other commonplace items, e.g., my age. Sometimes begin a task and then forget what it is or why I was doing it. IQ score 85. Cannot do calculation of any kind.

Tachycardia: 0 1 2
0) None.
1) Mild: can't fall asleep, but can relax and doze.
2) Severe: can feel hard, rapid heartbeats, can sometimes hear them.

Psychological: 0 1 2 3
0)..Cheerful, relaxed.
1) Cheerful, less relaxed.
2)..Mild stress.
3) Severe stress.

Sinus headaches: 0 1 2 3
0) None.
1) Mild.
2) Moderate.
3) Severe.

Sinus symptoms: 0 1 2
0) None.
1) Sniffles, stuffy head.
2) Difficulty breathing.

Definition and Criteria for ME/CFS Diagnosis
Ramsay/Fukuda.

The clinical identity of the myalgic encephalomyelitis/ chronic fatigue syndrome according to Ramsay/Fukuda is:
1) a unique form of muscle fatigability whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored.
2) variability and fluctuation of both symptoms and physical findings in the course of a day; and
3) an alarming tendency to become chronic (Ramsay 1988).
4) In a patient with severe fatigue that persists or relapses for 6 months. (Fukuda, et al., 1994).
Four or more of the following symptoms (all of which must have started after the onset of the fatigue) are concurrently present for 6 months:
1) Impaired memory or concentration
2) Sore throat
3) Tender cervical or axillary lymph nodes
4) Muscle pain
5) Multi-joint pain
6) New headaches
7) Unrefreshing sleep
8) Post-exertional malaise (Komaroff & Buchwald, 1998)

The Fukuda Definition excludes the following from a diagnosis of ME/Chronic FatigueSyndrome:
1) Active medical condition that may explain the chronic fatigue, such as untreated hypothyroidism, sleep apnoea, narcolepsy.
2) Previously diagnosed medical conditions that have not fully resolved, such as previously treated malignancies or unresolved cases of hepatitis B or C virus infection
3) Any past or current major depressive disorder with psychotic or melancholic features, including bipolar affective disorders, schizophrenia, delusional disorders, dementias, anorexia nervosa, or bulimia nervosa
4) Alcohol or other substance abuse within two years before the onset of chronic fatigue and at any time afterward.

Lecture by Dr Scott

Lecture by Dr Scott summarized by Bob Service

I attended the lecture given by Professor Don Scott yesterday in Newmarket, Ontario. An attentive group of between 30 to 40 people were presented with documentary evidence supporting Mr. Scott's assertion that the alarming rise in neurodegenerative diseases (such as ME and FM) were the direct result of bio-weapons research and production in the United States.

Mr. Scott traced the development of the biological weapons particularly after World War II, using slides of published peer-reviewed articles from prestigious research journals, and complemented these with slides of US government documents obtained under the Freedom Of Information Act. He frequently pointed out the numerous references in the articles to the sheep virus Scrapie, and that many of these references also mentioned degenerative diseases such as Huntingtons and Alzheimer's.

I was particularly interested in slides he presented showing the lesions on the brain of a ME patient. (I have also seen these lesions on several other MRI scans on different sites on the Web.) He pointed out that if lesions occur in certain parts of the brain, you have ME, if the lesions are in a different area, you have FM, or, in another area, MS. I was then amazed to learn that the CDC has issued an edict in the last month stating that physicians should not give an MRI to their patients with chronic fatigue syndrome! Mr. Scott then described an incident in the University Hospital in London, Ontario where a patient's doctor had arranged an MRI for her, and when the staff learned that she had CFS, they flatly refused to give her the test, and treated her very shabbily. It made me wonder what possible explanation could be given for the CDC's behaviour, and the appearance that Ontario physicians are taking direct orders from the US.

Mr. Scott is an excellent presenter, and his documentary evidence was presented in a clear, and passionate manner. I would suggest that if you get the chance to hear him speak that you try you best to see his presentation, or at least read his books. It will significantly change the way you think about the diseases we all have.

Books

Beyond Chaos

SOURCE: Arthritis Foundation
Just in time for Valentine's Day, the Arthritis Foundation announces the latest addition to its book series Beyond Chaos: One Man's Journey Alongside His Chronically Ill Wife, by Gregg Piburn, available in early February.

When his 31-year-old wife was diagnosed with fibromyalgia, a potentially debilitating arthritis-related condition, Piburn says their life began all over again. Beyond Chaos is a couple's guide to delving into the emotional realm of chronic illness and its ramifications, and learning how to progress toward a more healthy way of relating to one another. "Our story isn't pretty, but it's real,'' says Piburn. Through his personal essays, Piburn demonstrates the way his family worked through the difficult periods in their cycle of growth, and ends each section with suggested actions to help readers reach their relationship goals.

Nearly half the U.S. population suffers from some form of chronic illness; 43 million people have arthritis. By 2020 it will soar to 60 million, mostly women.

The American divorce rate hovers around 50 percent, but marriages where one of the partners is chronically ill report a divorce rate of 75 percent.

While information and support for the person with a chronic illness is abundant, the healthy partner in the relationship rarely finds an outlet for their fears, frustrations and sorrows.

Fibromyalgia in lupus erythematosus.

Authors: Grafe A, Wollina U, Tebbe B, Sprott H, Uhlemann C, Hein G Department of Dermatology, Friedrich-Schiller-University Jena, Germany. Journal: ACTA DERMATOVENEREOLOGICA 1999 Jan;79(1):62-4 PMID: 10086862, UI: 99184666

The authors investigated 60 patients with different subsets of lupus erythematosus for the presence of fibromyalgia, association with clinical and laboratory parameters, and disease activity.

FM-positive patients suffered significantly more often from headache, morning stiffness, diffuse alopecia, muscle pain, arthralgia, renal involvement, and disclosed peripheral blood cell cytopenia, rheumatoid factor, hypergammaglobulinaemia and intake of corticosteroids and azathioprine. FM was more frequent in systemic lupus than in other lupus subsets but did not show a correlation with lupus activity. The authors concluded that FM and lupus erythematosus are distinct complaints, although patients with lupus are at risk of developing secondary fibromyalgia, and they state that FM symptoms can be mistaken for those of lupus.

Chronic Fatigue Syndrome : A Treatment Guide

(Quality Medical Home Health Library) -- Erica F. Verrillo, Lauren M. Gellman; Paperback 400 pages First St. Martin's edition (February 1998) St. Martin's Press; ISBN: 0312180667

Evidently, what has occurred is that the authors (?) have republished the book through a general publisher (more available to the general public). The original publisher was a medical publisher, tougher for the general public to track down and they also much charge more because they are a specialty publisher. (Believe me, medical books *always* cost a heck of a lot more due to the limited market.) This is a wonderful move, since so many of us are on fixed, tiny incomes.

Anyone who lives with or is the care-giver for someone with a chronic illness such as fibromyalgia, chronic fatigue syndrome, diabetes, arthritis or ulcers, as well as the people enduring these ailments, will benefit from the very personal insights beautifully expressed in this book. The book will be published on Valentine's Day, 1999."

Brain Imaging Discussion

A paraphrased discussion of a CFS Radio Program from April 25th, 1999 with Roger G. Mazlen, M.D. Host with Dr. Myra Preston and Kim Phillips Transcribed by Carolyn Viviani carolynv@inx.net

This week's guest on the CFS Radio show was Dr. Myra Preston who is a neurophysiologist and president of Siber Imaging. She gave a fascinating discussion of her technique of using topographic brain mapping to differentially diagnose Chronic Fatigue patients from other patient populations. She describes its use and how it presents as a definite piece of physical evidence for the physical condition of CFS and as such can be used as a diagnostic marker. Also discussed is the use of neurofeedback therapy to rehabilitate the brain.

Dr. Mazlen
We have as our guests Dr. Myra Preston who's the president of a company called Siber Imaging and her associate, Kim Phillips. And we'll be talking with them in just a second. Just as a matter of a brief introduction, we're talking to them in Charlotte, North Carolina where they're located and the reason we have them as guests today on the show is that made a significant breakthrough in the aspect of both diagnosing and treating Chronic Fatigue Syndrome and I'm going to let you hear it from them. We're going to talk to them directly. Welcome to our show, Dr. Preston and Kim Phillips.

Dr. Preston and Kim
Thank you.

Dr. Mazlen
And according to information that I received you had 90% accuracy in detecting Chronic Fatigue Syndrome. Am I correct in quoting you that way?

Dr. Preston
Yes, you are.

Kim
I sure can. One of the situations is that we were looking at the "with" challenge to "without" challenge with the CFIDS patients. One of the problems is that many people are doing neuropsychological testing and are coming out fine, they were not getting help with the disability aspect, so by the looking at the "with" challenge with the patients it was amazing what the brainwave patterns were doing. So the total power when the patient would be in an eyes-closed, relaxed condition, we would splice it out and look at them with challenge such as doing digit type(??) work, essentially basically with their eyes closed and what we found is that the patient population's brain waves did not shift appropriately during that testing and that the controls' brain waves definitely did shift appropriately and so that was one significant factor, the total power differential from one patient to the controls was very different. In addition to that we looked at also the delta band, which is, of course, a sleep wave, we looked at theta which is a groggy state wave and then looked at beta to see if there was shifting occurring at any level with the patient, and actually again, from one group to the other you can see the significance was at .01, .02 for all those variables that we selected.

Dr. Mazlen
Well, that's really exciting information. Now, I understand from reading the material that you provided that the Chronic Fatigue Syndrome patients have too much of the delta or sleep waves, even when they are awake. Is that kind of what it's about or am I over simplifying?

Dr. Preston
No, that's not an oversimplification actually. When Chronic Fatigue patients are awake and going through their day their brain has a lack of appropriate amplitude shifting through all of the frequencies. The delta wave is one that we particularly pulled out as a way of having a diagnostic marker but our further research has demonstrated that the type of slow wave activity in each particular patient does correlate with the length of time that person has been ill. But I guess the best way to think about it is that there is a lack of appropriate shifting of the brain through all of the brain frequencies.

Dr. Mazlen
To simplify that, would it be analogous to say that the brain can't shift gears appropriately?

Dr. Preston
A good analogy I like to use if that if you think of the brain as being like a battery, it's as if the battery is being drained of power.

Dr. Mazlen
OK. I think that's what a lot of the patients perceive in many ways. We know that there's a lot of cognitive problems. Now, this is so important that I want to make a point of stating also that through this technology that you've developed you have a patent that you received in 1993. Can you describe it briefly?

Dr. Preston
It's an unusual patent in that it's a patent on a methodology. And the patent is on the use of topographic brain mapping to differentially diagnose Chronic Fatigue patients from other patient populations and in particular the methodology patent is the presence of something called phase reversals in the brain which is where the brain activity actually goes from baseline to negative and back up to baseline, increased slow wave amplitude in the delta, beta or alpha bands, decreased fast wave activity, which is called beta activity and above, and a lack of an appropriate shifting with cognitive challenge throughout the brain. So we must have a combination of all of those present in one individual to fit into the patent.

Dr. Mazlen
OK, now the reason I asked you that and I'm leading you on for a reason is that you're saying that, in essence, and I want to confirm this with you, that you can distinguish the Chronic Fatigue patient from somebody who is just merely clinically depressed or has a major depression. Am I correct in that?

Dr. Preston
I believe that I can do that, yes.

Dr. Mazlen
Well, I think that's extremely important because one of the things that's been leveled against Chronic Fatigue Syndrome patients through the years is that they really are patients who either have an element of depression which is significant and primary or that they're really very depressed because they're sick and that, of course, makes them sicker and that really a lot of the psychology so-called experts have been trying to say that nobody's proven that there is a specific brain problem in Chronic Fatigue Syndrome patients and it seems like you've done that.

Dr. Preston
That's correct and I think part of the depression diagnosis was given too readily because with neuropsychometric testing Chronic Fatigue patients scatter all across the scale and historically that's been the diagnostic marker for someone who's malingering, or someone who's depressed or not putting forth their maximum effort. But, if you in combination with neuropsychometric testing watch the brain while this person is scattering all over the score range you'll understand that it's because some areas of the brain are functioning, some areas are compensating and that together in combination with the testing then does not fit the diagnostic category for depression.

Dr. Mazlen
Good, I'm glad we cleared that point up and I hope a lot of other people are going to get this information.

Dr. Preston
And you know there's been recent research using topographic brain mapping with depressed and the initial findings have been depressed patients have abnormalities in the occipital regions of the brain, slow wave activity, and one of the things that is so different about Chronic Fatigue patients is because they compensate often by having a more acute visual processing system. Their occipital regions are usually the most functional.

Dr. Mazlen
OK, that's exciting. Now, we're going to talk a little while later about treatment that you've developed but I want to go to a caller, Linda in Connecticut. Do you have a question for Dr. Preston and Kim Phillips?

Linda
A question maybe. I've had Chronic Fatigue for 29 years and did not know until 7 years ago. After the fatigue the cognitive is my worst, the brain fog. So this sounds really interesting to me, but once you're diagnosed, what do you do?

Dr. Preston
Well, I'm not saying that our treatment is the only treatment. OK it should be in combination with many other types of treatment, but specifically the neurofeedback treatment is a form of physical therapy for the brain where we identify the areas of the brain where these abnormalities exist, we use operant conditioning.

Linda
I don't know what that is.

Dr. Preston
I should think of it this way, it's a treatment which is designed to get the areas of your brain which are dysfunctional to in a very controlled fashion to become more functional so that we are trying to correct the disrupted brain physiology in a very slow and controlled fashion so that It is using a form of biofeedback where we are giving you feedback about your EEG, your brainwave patterns as they are occurring and then using techniques of operant conditioning which simply means if we expose you to the proper response over and over again you will be able to have that response more frequently. I know that sounds complicated...

Linda
It does, but how would I get something like that done where I live.

Dr. Preston
Where do you live?

Linda
Monroe, Connecticut.

Dr. Preston
We have satellite clinics in Great Neck, New York which I think might not be that far from you, and of course, Houston, Texas which would be too far from you.

Dr. Mazlen
We have a direct number for Dr. Preston and Kim Phillips at Siber Imaging in North Carolina which is 704-543-0427.In terms of the treatment how long does it take and how many sessions do they usually have to got through in order to get some positive results.

Dr. Preston
My experience has been that a person needs a total of 60 sessions and probably will not begin to see results until between the 20th and 30th session and, in fact, might even experience an exacerbation of symptoms. Sessions are one hour long and serial brain mapping is done throughout the treatment so we can determine if the brain is responding properly, and if not, how to change the way we are going about our treatment. The closest model for comparison is the physical therapist using various modalities to rehabilitate an injured or paralyzed in order to restore function to the muscle. It should be thought of as a technique of rehabilitation, bringing order to a disordered brain. And I can let Miss Phillips speak to that as she's been through the treatment. The website is http://www.siberimaging.com and our email address is CZar6nick@aol.com