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TENDER TIMES

FIBROMYALGIA ASSOCIATION
OF SAULT STE. MARIE & ALGOMA DISTRICT


June 2000


Welcome to our 5th edition of "TENDER TIMES" newsletter.
We hope you find our newsletter informative and interesting.


Inside This Issue
Do You Believe the Fibromyalgia is a Real Illness
Do I Have Lupus or Fibromyalgia
What Is An ANA
Laughter is Good Medicine
Getting the Jump on Restless Leg Syndrome
Helpful Hints for Common Side Effects
Solutions for Real-World Problems
Thoughts From The Pantry

"DO YOU BELIEVE THAT FIBROMYALGIA IS A REAL ILLNESS?"

The following information was released on Dec. 20, 1999 by the Environmental Illness Society of Canada.
This information became available due to an interview on FM that aired on CBC news.

On behalf of the Environmental Illness Society of Canada - La société canadienne pour les sensibilités environnementales I wish to inform you and your audience that Fibromyalgia exists and that it is often associated with Chronic Fatigue Syndrome and Multiple Chemical Sensitivity. These three sister illnesses often overlap.

In 1997 the EISC established National Environmental Illness Awareness Month and this has been recognised in the House of Commons. All across the country people with these sister illnesses work to raise aware-ness and to educate the public.

A Toronto researcher Dilnaz Panjwani and her team Drs. Panjwani and Panjwani have done three double blinded studies that demonstrate a 2,3 DPG abnormality and that as a result of the abnormality these patients, contrary to what your guest apparently asserted, cannot exercise because their bodies cannot transport oxygen into their cells. When they exercise they develop a build up in lactic acid in their muscles, which leads to pain, inflammation and cramps (like the cramping you get when you eat and then go swimming). Dilnaz Panjwani conducted her research to determine whether there are organic causes for the illness and, she proved that there most definitely is and she found a biomarker (the 2,3dpg abnormality).

Other biomarkers have been found for this and for the two other illnesses as well. Dr. Dilkush Panjwani who was a member of the research team is a psychiatrist at the Trillium Hospital in Toronto. The research proved what he had suspected all along: the illnesses are real and they have organic causes. Ms. Panjwani's research was supported by the EISC. The EISC arranged for her to present the results of her findings at Health Canada a few months ago. She was interviewed by CBC's The Health Show as well.

Fibromyalgia is treatable through the treatment modalities of Environmental Medicine. The pain and inflammation of FM can be reduced and mobility and tolerance to exercise can be built up as a result of treatments.

FM can be disabling. On June 2, 1999 a motion (M-468) put forward by MP Mac Harb was voted on in the House of Commons. Minister Eggleton spoke to the issue. MPs Harb, Catterall, Adam, Blaikey, Grewal and Hardy all spoke to the motion which recognised CFS-FM-MCS as illness that have the ability to disable and the House voted to send the matter of MCS-CFS-FM to the Standing Health Committee. On June 4th the Health Minister, Allan Rock spoke briefly in support of the motion. This action was as a result of a lobby campaign by the EISC and its affiliates.

In 1986 Judge George Thompson was mandated by the then PC Ontario provincial government to study the issue and to present his committee report. It is about as true today as it was 13 years ago. He affirmed the existence of the illnesses. Judge Thompson is with the PCO and teaches at Queen's University in Kingston.

One outcome of his committee's investigation was the funding of the Environmental Health Centre at Women's College Hospital. The Environmental Health Centre is mandated to study MCS-CFS-FM, the three sister illnesses. In the '80s there had been a large number of studies into these illnesses funded by the Health Ministry. Health Canada's Laboratory Centre for Disease Control held three workshops on the subject. Two were on MCS (latest was 1990) and one was on FM. The ATDSR in the USA has sponsored three significant medical and scientific workshops on CFS-MCS-FM.

In 2000 the Environmental Illness Society of Canada - La société canadienne pour les sensibilités environnementales, partnered with Health Canada will hold the first International Conference on Environmental Illness, in Ottawa.

The EISC will hold a one-day workshop, which will examine the socio-economic impacts of the illness and the effect of poverty as a determinant of health. Several UN Conventions will be reviewed including the UN Convention on the Rights of the Child, on Human Rights and on Disability Rights. The EISC workshop theme is the 1986 Ottawa Charter for Health Promotion, whereby Canada committed to health for all by 2000 and Beyond.

The outcome of the conference will be a report that will serve as a blueprint for change in the health and the social support systems for persons with MCS-CFS-FM. At present there are approximately 15% of the population that are estimated (by the EPA) to be affected.

Timely, appropriate treatments can lead to a palliation of pain, to a reversal of the progression of the illness and to a large degree of recovery. Simply telling a patient to take muscle relaxants and pain pills along with anti-depressants, which is the current fare, will not bring about recovery and they may very well remain sick for 5-10-15 years or more.

The Ottawa Charter for Health Promotion advocates for a change in paradigm and this is just one such case where some physicians have not kept up with the changing body of knowledge and that, unfortunately, is to the detriment of their patients by the College des medecins de Quebec and numerous other medical licensing bodies across Canada, the US and around the world.

I do not argue with the need to exercise, but before an MCS-FM-CFS patient can do that they must first have their ability to carry oxygen to tissue cells improved and they must be able to deal with an onslaught of chemicals that may be released from their tissues when they do exercise or they can cause more harm than good by trying to exercise.

The sense one gets from your guests is that person with FM (and for that matter CFS-MCS) are lazy malingerers and if they'd just get off their couches, stop being depressed and self-focused and start a regular program of exercise they'd get better. When Fibromyalgia has been caused by a toxic overload (say by pesticides or solvents) this very advice may cause the patient to detox thereby releasing trapped chemicals (in the example- solvents or pesticides) from muscles and fats and allowing it to dump into the bloodstream and circulating through the body causing organ damage. Organs rich in fats or cholesterol as the liver and brain even breast tissue will become vulnerable sites for the released chemicals to bond and to cause damage. Your guests must have been unaware of the recent studies or they would never counsel their MCS-FM-CFS patients to do this without close supervision and preparatory treatments.

Recent studies also show that a large percentage of patients with MCS-CFS-FM have undetected mycoplsama infections and yeast overgrowths. I did not hear that your guests had informed your audience of this fact. There are laboratory tests that can help diagnose these illnesses. There are techniques in SPECT scans that can demonstrate the problems that these patients have at the biochemical level in the brain. Again, the speakers did not mention this to my knowledge.

The interview with your guests underscored the need for the 2000 International Conference on Environmental Illness and for legislation to protect the 15% of Canadians who are suffering and who are not supported by the medical profession. As a result, they are not provided up-to-date information, tests and treatments.

The EISC has been linked to various CBC sites and we welcome you to provide a link to our site so that those in your audience who had once again been victimised by their illness can learn that they have nothing to hide and that there is no shame in having FM-CFS-MCS.

They were blamed and they were publicly shamed by your guests and this goes on time and again in doctors' offices across the country.

As medical professionals we are sworn to keeping our knowledge up-to-date and we must, as professionals, provide our patients the kinds of treatments that best treat their illness. The UN Convention on the Rights of the Child affirms this. The Helsinki Accord once again, reminds physicians of this obligation they have to their patients and the Ottawa Charter for Health Promotion stresses the need for new paradigms in medicine. Yes, Fibromyalgia exists and your audience can become familiar with new, exciting and effective treatments and, to the health realities of the new millennium.

Yours in health,
Judith Spence, RN
C.E.O.

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DO I HAVE LUPUS OR FIBROMYALGIA?

This is not an uncommon question that I get asked. Unfortunately some fibromyalgia patients are erroneously diagnosed as having lupus, a potentially dangerous condition that affects about 2 in every 1000 people. Through your doctor and educational literature and support groups, you have learned lupus patients can have involvement of almost any system of the body including severe involvement of the kidneys, heart and brain. This is scary information; even though you know that only a minority of lupus patients have such a severe course.

The commonest problems encountered by most lupus patients are joint pains, muscle pains, fatigue and skin rashes. It is not unreasonable to assume an increased level of fatigue and increasing joint pain heralds a severe flare of your lupus that may even progress to life-threatening internal organ involvement. Such thoughts are anxiety-provoking and depressing; they can cause sleepless nights. Both you and your doctor may be convinced that your accelerating symptoms represent a lupus flare. You may be put on prednisone or the dose of your steroids may be increased. But before you and your doctor jump to conclusions, consider the possibility that you could also have fibromyalgia.

Fibromyalgia is a common condition of musculoskeletal pain, sleep disturbance and fatigue, that affects about 20 out of every 1000 persons. Recent studies have shown that approximately one-third of patients with lupus also have fibromyalgia. It is important to understand that the fibromyalgia in these patients develops after the lupus has become well established. It is extremely rare for a lupus patient to later develop fibromyalgia - I have only seen this in one patient in 25 years of practice as a Rheumatologist. Although Fibromyalgia patients have widespread body pain which arises form their muscles, they often feel that the pain is originating in their joints. In addition to widespread pain, other common Fibromyalgia symptoms include a decreased sense of energy, poor sleep and varying degree of anxiety and depression (related to a changed physical status). To complicate matters further, other medical conditions are commonly associated with Fibromyalgia. These include irritable bowel syndrome, tension headaches, migraine, irritable bladder syndrome, premenstrual tension syndrome, cold intolerance (including Raynaud's phenomenon) and restless leg syndrome. This combination of pain and multiple symptoms may lead physicians to pursue an extensive course of investigations, which are often frustratingly normal. In fact, there are no blood tests or x-rays which reliably diagnose Fibromyalgia. In order to diagnose Fibromyalgia, a physician must take a careful history and preform an examination which focuses on specific local areas of tenderness. These locations are called tender points. As many of the symptoms of Fibromyalgia are similar to those experienced by lupus patients, there is a natural concern that the symptoms of a Fibromyalgia flare could be the underlying lupus picking up steam. Ultimately, the treating physician has to make a call on these increased symptoms. In general, lupus patients who are undergoing a flare have other findings; such as evidence of true arthritis (usually with joint swelling), skin rashes, sores in their mouth, fever, hair fall or evidence of specific organ disease such as pleurisy or microscopic amounts of blood and protein in the urine. Furthermore, in active lupus, blood tests such as the sedimentation rate often become elevated, the white count (particularly the lymphocyte subset) becomes depressed and there is often an increase in the level of anti-DNA antibodies. None of these findings are a feature of fibromyalgia - thus the distinction between a flare of fibromyalgia and a flare of lupus should not be too difficult if the problem is approached systematically. The American College of Rheumatology have developed criteria for diagnosing lupus - just as they have for diagnosing fibromyalgia. To have a definite diagnosis of lupus you must have 4 or more of the features in the table following the article.

It is important to realize that the symptoms of fibromyalgia do not respond to corticosteroids such as prednisone or even immunosuppressive agents, such as azathioprine, methotrexate or cyclophosphamide. These are powerful and important drugs in the treatment of lupus but are often associated with undesirable side effects. Thus, making a distinction between fibromyalgia symptomatology and lupus symptomatology is of great practical relevance in deciding what medications to use.

In my experience, most lupus patients are often shocked to hear that they also have fibromyalgia, and in many cases don't like being given that diagnosis. They somehow think that it is not a real disease and detracts attention away from the realities of having lupus. I can understand these thoughts. However, knowing that some of your musculoskeletal pain is fibromyalgia-related and not lupus should also be good news - as who wants to have lupus flare? Lastly, there are some "lupus" patients who have only fibromyalgia, but on testing were found to have a weakly positive ANA. They were incorrectly diagnosed as having lupus on the basis of the blood test. There is an increasing recognition among lupus specialists that this false diagnosis scenario is not at all uncommon.

CRITERIA DEFINITION
1 Malar rash Fixed erythema over cheeks but sparing nose-cheek folds.
2 Discoid rash Raised red patches with scarring in older lesions.
3 Photosensitivity Skin rash as a result of unusual reaction to sunlight.
4 Mouth ulcers Oral or nasal ulcers - must be observed by a physician.
5 Arthritis Tenderness and swelling in at least 2 joints observed by a physician
6 Serositis Either:
1. Pleurisy on examination by a physician or x-ray changes.
2. Pericarditis noted by a physician or ECG changes.
7 Kidney disease 1. Persistent protein in the urine of 0.5g or more
2. Cellular casts (maybe red cells, white cells or hemoglobin).
8 Blood disease One of the 4 following:
1. Hemolytic anemia with reticulocytosis.
2. Leukopenia with a white cell count of less than 4,000/mm2.
3. Lymphopenia with a lymphocyte count of less than 1,500/mm2.
4. Thrombocytopenia with a platelet count of less than 100,000/mm2.
9 Brain disease Either:
1. Psychosis.
2. Seizures. Both must be without other causes.
10 Positive ANA An abnorma titre of an anti-nuclear antibody (ANA) test in the
absence of other diseases or drugs known to cause a positive ANA.
11 Other antibodies Any one of these 4 tests:
1. A positive LE cell preparation.
2. A positive test for anti-DNA antibodies.
3. A positive test for the Sm nuclear antigen.
4. A false positive for syphilis.

Table 1. Characteristics used in the diagnosis of lupus.

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WHAT IS AN ANA?

ANA is the abbreviation for Antinuclear Antibody Antibodies. It is a test that is performed by applying the patient's serum to a slide which has been layered with tissue culture cells - usually a cell line called Hep2 (originally derived from a patient with an epithelial cell tumor). If the serum has antibodies that react with cell nuclei they will "stick to the cells and can be detected with a second antibody - labeled with a fluorescent marker. When viewed under a microscope, illuminated with an ultra-violet light, the Antinuclear Antibody antibodies are seen as blobs of green fluorescence. This is what is meant by a positive ANA. Each laboratory has to determine how much the patient's serum must be diluted before it is reacted with the cells - as "neat" serum often gives a positive ANA test. Thus a positive test is defined as the lowest dilution that would be expected to produce green fluorescence in a patient with disease. This is usually referred to as a titre. For instance, a titre greater than a dilution of 1 in 40 might be the dilution separating a normal serum from a diseased serum. This is usually seen on the lab report as Positive 1:40. The higher the titre, the more likely the patient has an immune disease such as lupus (SLE).

Causes of a Positive ANA

Do You Have Lupus?

The most important thing you need to know about a positive ANA is: it doesn't mean you have lupus.

This is because there are many other causes of a positive ANA. However a negative ANA virtually rules out the possibility of having lupus. The possible causes of a positive ANA are previously listed. Importantly some normal individuals have a positive ANA - this is more likely as you age and if you are female. The diagnosis of lupus is based on the finding of 4 or more findings out of 11 features. A positive ANA is just one of these findings. Unfortunately some fibromyalgia patients are incorrectly diagnosed as having SLE.

Taken from www.myalgia.com

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LAUGHTER IS GOOD MEDICINE


I once asked my doctor, "How can I ever repay your kindness?"
He said, "Cheque or cash."
- Milton Berle -


The doctor's nurse called the patient: "Your cheque came back."
The patient said, "So did my arthritis!"
- Milton Berle -


Patient: I told the pharmacist about my symptoms.
Doctor: What sort of foolish advice did he give you?
Patient: He told me to see you.
- Ron Dentinger -


The instructions read, "Take one pill, three times a day."
How am I supposed to do that?
Tie a string to it?
- Anonymous -

From Laugh Twice and Call
Me In the Morning by Bruce Lansky.

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GETTING THE JUMP ON RESTLESS LEGS SYNDROME

Getting the Jump on Restless Legs Syndrome: Dietary and Sleep Changes, Medications, Can Bring Relief

by Mike Fillon, MS

WebMD Medical News

May 3, 2000 - People who have the irresistible urge to move their legs while lying in bed at night, a condition known as restless legs syndrome (RLS), can rest assured that they're suffering from a legitimate malady. That is, when they can get any rest at all.

"Up until 10 to 15 years ago, doctors didn't pay much attention when patients complained about it," George W. Paulson, MD tells WebMD. "It's one of those things that if the doctor can't actually see it he doesn't take it very seriously. But it's very troublesome for some patients and very, very real."

Many people live with the condition for years, despite their exhaustion, before seeking treatment, Paulson writes in the current edition of Geriatrics. And RLS is sometimes resistant to prolonged treatment. But some sufferers can get some relief through simple lifestyle changes, and medication does the trick for others.

Paulson, the Kurtz Professor of Neurology at Ohio State University Hospitals, says that restless legs syndrome - incorrectly identifed by some as "jumpy legs" -- is a neurological sleep disorder that causes an uncontrollable urge to move the legs, especially when resting. The National Heart, Lung and Blood Institute of the National Institutes of Health describes RLS as a sleep disorder in which a person experiences unpleasant sensations in the legs that may feel like creeping, crawling, tingling, pulling, even pain. These sensations usually are felt in the calf area, but may occur anywhere from the thigh to the ankle of either or both legs, and, in some people, the arms.

Most often, RLS strikes when the person lies down or sits for prolonged periods of time, such as while driving, watching a movie, even sitting at a desk while at work. The symptoms also tend to follow a set daily cycle, with the evening and night hours being more troublesome for sufferers than the morning. People with RLS may find it difficult to fall asleep because of their strong urge to walk or do other activities to relieve the sensations in their legs.

Although researchers don't know what causes it, many believe that deficiencies of iron or other nutrients, or consumption of caffeine or alcohol, may trigger it. It can be hereditary, and symptoms seem to be worsened by chronic conditions such as Parkinson's disease, arthritis, diabetes, or thyroid disease. RLS can also be caused or aggravated by medication.

Although people of any age can have it, it is more common in older people, Paulson says. According to his research, as many as 25% of people 65 and older suffer from RLS. It may also affect 5% to 10% of the entire population.

Researchers from Stanford University and Johns Hopkins University who are working on a study of the syndrome believe the actual percentage may be far greater. In their research, they have found that over 15% of the medical patient population reported symptoms of RLS.

"These results show there is a significant population of people who suffer from restless legs syndrome. We believe effective treatment is available and can significantly improve both their sleep and their quality of life," says Richard Allen, MD. Allen is assistant professor of the department of neurology and co-director in neurology of the Sleep Disorders Center at Johns Hopkins University in Baltimore.

In addition to avoiding caffeine and alcohol, Paulson says, moving the legs, walking, rubbing or massaging the legs, or doing knee bends can bring relief, at least briefly. He also recommends that patients practice good sleep habits, such as going to bed at the same time each night; getting up at the same time each morning; using the bed only for sleeping and sex; and avoiding naps.

But sometimes medications are needed. The treatments for RLS range from dopamine drugs such as Mirapex to muscle relaxers, pain pills, and antiseizure medications, Paulson says. These medications have varying degrees of success in relieving RLS symptoms. According to Allen, recent studies show that the newer dopamine drugs used to treat Parkinson's disease, such as Mirapex, work best.

Paulson says that more than 75% for people with RLS also have periodic limb movements during sleep - known as PLMS- that can cause difficulties with sleep and can disturb bed partners. The Restless Legs Syndrome Foundation describes these movements as jerks that typically occur 20 to 30 seconds apart, on and off throughout the night. Someone with PLMS is usually unaware of the movement or of the partial arousal that disrupts their sleep. Although most people with RLs have periodic limb movements, most people with PLMS (especially the elderly) have no other symptoms of RLS.

Although RLS is usually not dangerous, Paulson says that the sleep difficulties they cause can interfere with sufferers' lives. "This may make the person more tired than normal, affecting their ability to work, socialize, and can cause mood swings."

Paulson tells WebMD about a patient he was asked to visit a few years back at a hospital who hadn't had a good night's sleep in weeks. "She had RLS," says Paulson. "And she was a mess."

Vital Information:


Have you ever thought that not looking after yourself is abuse?
- Camilla Lawson -

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HELPFUL HINTS FOR COMMON SIDE EFFECTS

taken from info. researched by Health Canada

LOSS OF APPETITE

NAUSEA/VOMITING

MOUTH PROBLEMS

Dry Mouth

Sore Mouth

Sore Throat and Swallowing Difficulty

Taste Problems

ELIMINATION PROBLEMS

Constipation

Diarrhea

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12 SOLUTIONS FOR REAL-WORLD PROBLEMS

  1. When arthritis affects your hands' grip-strength, turning a doorknob can be exruciatingly painful. Its spherical shape and slippery surface force you to grasp it firmly with our fingers and thumb, placing harmful mechanical stress on your hand's small joints. There are a number of solutions: A no-cost approach is to wind a few elastic bands around the doorknob's widest part, which will give you increased traction so that you won't have to squeeze as hard. Or you could replace your existing door handles with lever handles, but be forewarned: they're expensive. Mid-priced alternatives available at medical supply stores are doorknob covers and extensions.


  2. If you have to hook the tips of your fingers into the handles on your cupboard doors and drawers to open them, you're subjecting your finger and wrist joints to a lot of mechanical stress. Loop pieces of cord through or around the handles. This allows you to pass your forearm through the loop and use your large joints and body weight to pull. Also, spray drawer-runners with silicone or lubricating oil so that drawers will slide smoothly.


  3. Notice how your knees are actually higher than your hips and buttocks when you're sitting in a low couch or chair? In practical terms, that means that, when you stand up, you're going to have to lean forward and propel yourself to your feet by pushing down with your knees. That can be hard on painful, weakened joints. The solution is to put (or have someone else put) sturdy wooden blocks under the legs of the couch or chair to raise the seat just enough so that your hips are level with, or slightly higher than your knees. Another approach is to place an additional seat cushion over the existing one.


  4. Place a basket at the bottom of the stairs to collect items you'll need to take upstairs and another basket at the top for the reverse trip. Cutting down the number of times you have to go up and down the stairs will save your energy for more enjoyable actiivities.


  5. "Fatten" the handles of tools, cooking utensils, flatwear, hair - and toothbrushes - any handle that's difficult to grip - with foam tubing used to insulate water pipes. The tubing is slit on one side for easy installation and can be cut to length with scissors, slipped over a handle, then secured in place with duct tape.


  6. Bedside and table lamps that turn on and off when you touch their bases area a clever way to avoid fumbling in the dark - or trying to trip a switch with arthritic fingers. Lighting stores also sell a device called a Touch-tronic™ that fits into a light socket and converts conventional lamps into "touch" lamps.


  7. When you're concentrating on any activity - be it deskwork, gardening or piecing together a jigsaw puzzle - use a kitchen timer to remind yourself to stretch and change position every half-hour or so.


  8. Slippery bathroom surfaces are some of the most common causes of accidental falls among seniors and people with arthritis. Have a professional contractor install safety grab-bars in the shower stall or bath-tub, or next to the toilet for greater security. Non-slip rubber mats in the tub and on the bathroom floor can also greatly reduce the risk of an accidental fall.


  9. If you find it hard to do up buttons on your clothes, you have a number of options. Use a button hook (available at department and medical-supply stores) to thread a small wire loop through the buttonhole to snare the button and draw it back. Or remove the buttons and replace them with small pieces of Velcro™ and sew the buttons permanently in place on top of the buttonholes.


  10. Improve storage under the cupboards under the kitchen counter by making a "drawer" from a corrugated cardboard box. Spray the bottom of the box with silicone, and make a loop-handle by threading butcher's twine through two holes pierced in the side of the box. Hard-to-store items get organized , and you won't have to crouch or fumble for an item at the back of the cupboard.


  11. For storage in cupboards above the kitchen counter, try installing a "Lazy Susan" shelving unit, which usually consists of three circular shelves that pivot around a central axle. Jars, spices, coffee mugs, dry goods - all are instantly accessible simply by turning the Lazy Susan.
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Thoughts To Share From the Pantry
- from The Pantry Hospitality Corp -


The More You Give

The more you give, the more you get,
The more you laugh, the less you fret,
The more you do unselfishly,
The more you live abundantly.

The more of everything you share,
The more you'll always have to spare.
The more you love, the more you'll find,
That life is good and friends are kind.

For only what we give away,
Enriches us from day to day.



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Tender Times is the official publication of the Fibromyalgia Association of Sault Ste. Marie &
Algoma District. We would like to encourage members to send in articles for the newsletter.
Disclaimer:
The FASSM does not promote any product or necessarily endorse the information
in this newsletter. The newsletter is strictly for educational purposes only.