ME   ::  Myalgic Encephalomyelitis
  CFS  ::  Chronic Fatigue Syndrome
  FM   ::  Fibromyalgia
  MCS ::  Multiple Chemical Sensitivity

ABN 67 476 925 016   ME/CFS/FM Support Association Queensland Inc..
Tropical North Queensland Support Group
No 19, April 2008.Newsletter.

Phone (07) 4091 2970   Email: reynoldsn@dodo.com.au
    Website: http://au.geocities.com/me_not_cfs/

Greetings.

What is ME/Chronic Fatigue Syndrome (ME/CFS)?
Myalgic Encephalomyelitis (M.E.) also referred to as Myalgic Encephalopathy, Chronic Fatigue Syndrome, Chronic Post-Viral or Post-Infectious Fatigue Syndrome and Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), is a serious, very debilitating and complex illness that affects multiple systems in the body. Although chronic fatigue is a very common health problem, ME/CFS affects between 0.2 - 0.4 % of the population with a higher rate in females (0.37%) than in males (0.087%). One in 116 women aged 50 to 59 years is affected (a higher rate than cervical cancer) and one in 3000 Australians is severely ill with ME/CFS. As the underlying pathology of ME/CFS is not yet completely understood, there is no single diagnostic test and no known cure. Research is currently directed towards understanding the roles of persistent infection, neurological abnormalities, genetic factors, cardiac abnormalities, genetic factors, gut dysfunction, metabolic disturbances, stress and toxic exposures in causing and/or perpetuating ME/CFS.

AMALGAMATION and BLENDING
We have been approached by the FNQ Toxic Link group.
Their numbers declined and they decided to disband. After researching our support group, they decided to pass their assets on to us. So we now represent another group of people interested in their health and welfare.
Welcome Tim and friends!
We will now act as agents for ASEHA, the Allergy, Sensitivity & Environmental Health Association Qld Inc. With this Newsletter we enclose their brochure titled “Chemical Sensitivity”.
Other brochures we have in stock are:-

  • Sick homes Part 1 – Volatile Chemicals
  • Cosmetics and Personal Care – ‘Dangerous beauty’
  • Allergy and your child
  • Is it really attention deficit hyperactivity disorder?
  • Need to take a medication?
  • Is it really wheat allergy?
  • Is it really food allergy?
  • Is it really milk allergy?
  • Some facts on lactose intolerance
  • Safe handling of organochlorine pesticides on farms
  • EPA pollution hotline
  • Qld Health – A guide to consumer rights and responsibilities.
  • Food, Mood, Behaviour

The TNQ Support Group has long had an interest in MCS, (Multiple Chemical Sensitivities). We already had many of ASEHA’s pamphlets and information in our files, and have reproduced some of their articles occasionally. ASEHA have approved us as distributors of their information.

≈≈≈≈≈≈≈≈≈≈    

CFS AWARENESS DAY DINNER!

COME ONE COME ALL
To celebrate International CFS Awareness Day, we will be having dinner together at
BROTHERS LEAGUES CLUB,
99 Anderson St, Cairns, on May 12th at 6:00 pm.

CFS OFFICE
At last we have office assistants. Not one, but TWO. We have Vicky, typist extraordinaire and envelope stuffer! So far Vicky has helped sort, print, fold and stuff envelopes with newsletters. Thanks Vicky. Also we have a research assistant, Rene. We have purchased a new portable hard drive that will enable portability and transfer of information. THANKS LADIES! The office is still not open regularly. If you phone, please leave your name and number, and your call WILL be returned as we are able, using the VOIP phone.

MEETING UPDATE
At last we are able to resume our meetings. We expect the next “round” will be in most of the previous locations, and perhaps a few extras. This will be well publicized. Details will be advised in the next Newsletter. This support group still offers information by phone or mail or email, support by phone or personal visit, advocacy and referral, and access to your local contact. We've got you covered !

SUPPORT GROUP CONTACTS.
We are always open to having new contact persons. If there are none in YOUR area, please give some thought to starting something – perhaps with another person near you to share the load?

MEMBERSHIP
The Queensland Association can only operate successfully if we join with them as financial members. It doesn’t cost much, and you will be supporting the CFS network and State Newsletter.

  NEWSLETTER
  • Contributions to this newsletter are always welcome: recipes, jokes, personal stories and victories etc.
  • If you don’t require this Newsletter, please mark it “return to sender” and post it back to us.
  • Please let us know if you have email. It will save us postage.

DONATIONS
We need donations to cover office and Newsletter expenses. They can be paid direct into our Bendigo Bank account. BSB 633-000 A/c No 114 607 336. Your support ensures our financial survival.

  Useful CFS WEBSITES:
Queensland Association websitewww.users.bigpond.com/mefmtba/
The Australian Society websitewww.mecfs.org.au
Victorian Society websitewww.vicnet.net.au~mecfs
NSW Society websitewww.zip.com.au/~mesoc
LOCAL CONTACTS
Please feel free to call local contacts:
Atherton:Neil Reynolds4091 2970email
Cairns:Neville4053 6187email
Cardwell:Joy Dickson4066 0178email
Gordonvale:Volunteer pleaseVacantemail
Innisfail:Gwen Hammerton4063 2334email
Lake EachamJohn Cuff4095 3063email
Mareeba:Christel Venturi4092 3287
Mossman:Volunteer pleaseVacantemail
Ravenshoe:Les4097 0132
Smithfield:Peter Cummins4057 5920
Townsville:Ashley Hinds4778 3560email
OR;- if there is no group near you, you may wish to become a contact. Please advise Neil ASAP.

Disclaimer: Please note that information provided is given in good faith. No Liability will be accepted, as the information is not intended to replace professional medical help and treatment.

Copyright: Information provided by this group has been given for the education and training of the disabled. This material may be subject to copyright, and as such, the user is only permitted to retain documents for their own use. Any other use or copying must be approved by the copyright holders.

Chemicals: Many people attending our meetings are sensitive to chemicals and scents. For the comfort of others, please refrain from wearing perfumes or strong scents. Please do not bring agricultural chemicals or tobacco odours to the meetings.

A VISIT FROM THE BLACK DOG
The last issue of the Queensland Communicator has a story by Lyn about her ‘visit from the Black Dog’. Reading this made me aware that I was suffering myself, and that all the changes that happened in my life in the last 3 moths have actually been too much. Attempt at full-time work, ceasing that job, relationship breakdown, failure to finish my renovations, accommodating visitors, realisation that I NOT recovered from CFS and FMS and MCS – it was all too much. I took a few weeks off for Neil. Went sailing and camping. Talked to my prayer partners. Gradually returned to an even keel. Shot the dog. OK?

HUMOUR
WORDS AND THEIR MEANINGS

  • ADULT – A person who has stopped growing up and now grows around the middle
  • CANNIBAL – Someone who is fed up with people
  • CHICKEN – the only animal you eat before they are born and after they are dead.
  • COMMITTEE – a body that keeps minutes and wastes hours
  • EGOIST – someone who is usually me-deep in conversation
  • INFLATION – cutting money in half without damaging the paper
  • YAWN - an honest opinion openly expressed
ARE YOU A LEXOPHILE? (Lover of words!)
  • Why can’t a bicycle stand alone? It’s two-tyred.
  • What’s the definition of a Will? It’s a dead give-away.
  • What’s a chicken crossing the road? Poultry in motion.
  • Stuck with your debt? You can’t budge it.
  • A boiled egg is hard to beat.
  • A lot of money is tainted. Taint yours and taint mine.
QUOTES
  • “Nothing great was ever achieved without enthusiasm” =- Emerson.
  • “Kind words are the music of the soul” – Frederic William Faber.

INFORMATION PAGES.
We list below, some of the information we reviewed since the last Newsletter. Copies of these articles are available from the office by mail-out.

  • Impact of an acquired brain injury. The Brain Injury Association Qld.
  • Reducing Electromagnetic exposure may improve your health. Julie Genser, PlanetThrive.com
  • We also have another 6 articles by Bruce Campbell:
    • Grieving your losses
    • Creating a new life
    • Smoothing the emotional roller coaster
    • Counting your blessings
    • Stress Reduction
    • Taming Stressful Thoughts
    These are available to anyone interested by mailout.
  • The water cure – an interview with Dr Balmanghelidj.
  • Medicine from fish: - how to reverse disease with therapeutic protein.
  • The pH Nutrition guide to Acid/Alkaline Balance
  • Courtesy of Ashley, we have acquired a copy of the DVD set of Dr Cheney. This is more than 3 hours of medical review of the lack of function of the heart in CFS patients. A real challenge to the way we think of CFS.

    We propose to review the whole set, but need lots of time, or volunteers!

Many times I have been asked about the relationship between Chronic Fatigue Syndrome and Hashimoto’s Disease. I have copied, for your information, the following article from the Mayo Clinic, which may give some guidance why sometimes CFS is mistaken for Hashimoto’s, or vice versa.

Hashimoto’s Disease

Introduction
Hashimoto's disease causes inflammation of your thyroid, a butterfly-shaped gland located at the base of your neck, just below your Adam's apple. Although it weighs less than an ounce, the thyroid gland has an enormous effect on your health. It's part of your endocrine system, which is made up of several glands and tissues that produce hormones. These chemical messengers coordinate many of your body's activities, from digestion to metabolism to reproduction.

Hashimoto's disease is an autoimmune disorder in which your immune system inappropriately attacks your thyroid gland, causing damage to your thyroid cells and upsetting the balance of chemical reactions in your body. The inflammation caused by Hashimoto's disease, also known as chronic lymphocytic thyroiditis, often leads to an underactive thyroid gland (hypothyroidism). Hashimoto's disease is the most common cause of hypothyroidism in the United States.

Doctors use blood tests of thyroid function to detect Hashimoto's disease. Treatment of Hashimoto's disease with thyroid hormone replacement medication usually is simple and effective.

Signs and symptoms
Hashimoto's disease does not have unique signs and symptoms. The disease typically progresses slowly over a number of years and causes chronic thyroid damage, leading to a drop in thyroid hormone levels in your blood. The signs and symptoms, if any, are those of an underactive thyroid gland (hypothyroidism).

The signs and symptoms of hypothyroidism vary widely, depending on the severity of hormone deficiency. At first, you may barely notice any symptoms, such as fatigue and sluggishness, or you may simply attribute them to getting older. But as the disease progresses, you may develop more obvious signs and symptoms, including:

  • Increased sensitivity to cold
  • Constipation
  • Pale, dry skin
  • A puffy face
  • Hoarse voice
  • Elevated blood cholesterol level
  • Unexplained weight gain — occurring infrequently and rarely more than 10 to 20 pounds, most of which is fluid
  • Muscle aches, tenderness and stiffness, especially in your shoulders and hips
  • Pain and stiffness in your joints and swelling in your knees or the small joints in your hands and feet
  • Muscle weakness, especially in your lower extremities
  • Excessive or prolonged menstrual bleeding (menorrhagia)
  • Depression
  • Without treatment, signs and symptoms gradually become more severe and your thyroid gland may become enlarged (goiter).
  • In addition, you may become more forgetful, your thought processes may slow, or you may feel depressed.

Causes
Your thyroid gland produces two main hormones, thyroxine (T-4) and triiodothyronine (T-3). They maintain the rate at which your body uses fats and carbohydrates, help control your body temperature, influence your heart rate and help regulate the production of protein.

The rate at which thyroxine and triiodothyronine are released is controlled by your pituitary gland and your hypothalamus — an area at the base of your brain that acts as a thermostat for your whole system. The hypothalamus signals your pituitary gland to make a hormone called thyroid-stimulating hormone (TSH). Your pituitary gland then releases TSH — the amount depends on how much thyroxine and triiodothyronine are in your blood. Finally, your thyroid gland regulates its production of hormones based on the amount of TSH it receives. Although this process usually works well, the thyroid sometimes fails to produce enough hormones.

Your immune system's role
Normally, your immune system uses naturally occurring proteins (antibodies) and white blood cells (lymphocytes) to help protect against viruses, bacteria and foreign substances (antigens) that invade your body. Hashimoto's disease is an autoimmune disorder in which your immune system creates antibodies that damage your thyroid gland. The disease causes inflammation of your thyroid gland (thyroiditis), which may impair the ability of your thyroid to produce hormones, leading to an underactive thyroid gland (hypothyroidism). Then, your pituitary gland attempts to stimulate your thyroid gland to produce more thyroid hormones, thus causing your thyroid gland to enlarge (goiter).

Doctors don't know what causes your immune system to attack your thyroid gland. Some scientists think a virus or bacterium might trigger the response, while others believe a genetic flaw may be involved. Most likely, Hashimoto's disease results from more than one factor. A combination of factors, including heredity, sex and age, may determine your likelihood of developing the disorder. Hashimoto's disease is most common in middle-aged women and tends to run in families.

When to seek medical advice
See your doctor if you're feeling tired for no apparent reason or have any other signs and symptoms of hypothyroidism, such as dry skin, a pale, puffy face, constipation or a hoarse voice.

You'll also need to see your doctor for periodic testing of your thyroid function if you've had previous thyroid surgery, treatment with radioactive iodine or anti-thyroid medications, or radiation therapy to your head, neck or upper chest.

If you have high blood cholesterol, talk to your doctor about whether hypothyroidism may be a cause. And if you're receiving hormone therapy for hypothyroidism caused by Hashimoto's disease, schedule follow-up visits as often as your doctor recommends. Initially, it's important to make sure you're receiving the correct dose of medicine. And over time, the dose you need to adequately replace your thyroid function may change.

Screening and diagnosis
In general, your doctor may test for Hashimoto's disease if you're feeling increasingly tired or sluggish, have dry skin, constipation and a hoarse voice, or have had previous thyroid problems or goiter.

Diagnosis of Hashimoto's disease is based on your signs and symptoms and the results of blood tests that measure levels of thyroid hormone and thyroid-stimulating hormone (TSH). These may include:

  • A hormone test. Blood tests can determine the amount of hormones produced by your thyroid and pituitary glands. If your thyroid is underactive, the level of thyroid hormone is low. At the same time, the level of TSH is elevated because your pituitary gland tries to stimulate your thyroid gland to produce more thyroid hormone.
  • An antibody test. Because Hashimoto's disease is an autoimmune disorder, the cause involves production of abnormal antibodies. A blood test may confirm the presence of such antibodies.

In the past, doctors were unable to detect underactive thyroid (hypothyroidism), the main indicator of Hashimoto's disease, until signs and symptoms were fairly advanced. But by using the sensitive TSH test, doctors are able to diagnose thyroid disorders much earlier, often before you experience any signs and symptoms. Because the TSH test is the best screening test, your doctor will likely check TSH first and follow with a thyroid hormone test if needed. TSH tests also play an important role in managing hypothyroidism. These tests also help your doctor determine the right dosage of medication, both initially and over time.

Complications
Left untreated, an underactive thyroid gland (hypothyroidism) caused by Hashimoto's disease can lead to a number of health problems:

  • Goiter. Constant stimulation of your thyroid to release more hormones may cause the gland to become enlarged, a condition known as goiter. Hypothyroidism is one of the most common causes of goiter. Although generally not uncomfortable, a large goiter can affect your appearance and may interfere with swallowing or breathing.
  • Heart problems. Hashimoto's disease also may be associated with an increased risk of heart disease, primarily because high levels of low-density lipoprotein (LDL) cholesterol — the "bad" cholesterol — can occur in people with an underactive thyroid gland (hypothyroidism). Hypothyroidism caused by Hashimoto's disease also can lead to an enlarged heart and, in rare cases, heart failure.
  • Mental health issues. Depression may occur early in Hashimoto's disease and may become more severe over time. Hashimoto's disease can also cause sexual desire (libido) to decrease in both men and women and can lead to slowed mental functioning.
  • Myxedema. This rare, life-threatening condition can develop due to long-term hypothyroidism as a result of untreated Hashimoto's disease. Its signs and symptoms include intense cold intolerance and drowsiness followed by profound lethargy and unconsciousness. A myxedema coma may be triggered by sedatives, infection or other stress on your body. Myxedema requires immediate emergency medical treatment.
  • Birth defects. Babies born to women with untreated Hashimoto's disease may have a higher risk of birth defects than many babies born to healthy mothers. Doctors have long known that these children are more prone to intellectual and developmental problems. There may be a link between hypothyroid pregnancies and birth defects, such as cleft palate. A connection also exists between hypothyroid pregnancies and heart, brain and kidney problems in infants. However, if any of these conditions are diagnosed within the first few months of a baby's life, chances of normal development are excellent.

Treatment
Treatment for Hashimoto's disease may include observation and use of medications. If there's no evidence of hormone deficiency and your thyroid is functioning normally, your doctor may suggest a wait-and-see approach. Synthetic hormones

If Hashimoto's disease causes thyroid hormone deficiency, you may need replacement therapy with thyroid hormone. This usually involves daily use of the synthetic thyroid hormone levothyroxine (Levothroid, Levoxyl, Synthroid). Synthetic levothyroxine is identical to thyroxine, the natural version of this hormone made by your thyroid gland. The oral medication restores adequate hormone levels, returning your body to its normal functioning.

Soon after starting treatment, you'll notice that you're feeling less fatigued. The medication also gradually lowers cholesterol levels elevated by the disease and may reverse any weight gain. Treatment with levothyroxine is usually lifelong, but because the dosage you need may change, your doctor is likely to check your TSH level every six to 12 months.

Monitoring the dosage
To determine the right dosage of levothyroxine initially, your doctor generally checks your level of TSH after a month or two. Excessive amounts of the hormone can accelerate bone loss, which may make osteoporosis worse or add to your risk of this disease. Overtreatment with levothyroxine also can cause heart rhythm disorders (arrhythmias).

If you have coronary artery disease or severe hypothyroidism, your doctor may start treatment with a smaller amount of medication and gradually increase the dosage. Progressive hormone replacement allows your heart to adjust to the increase in metabolism.

Levothyroxine causes virtually no side effects when used in the appropriate dose and is relatively inexpensive. If you change brands, let your doctor know to ensure you're still receiving the right dosage. Also, don't skip doses or stop taking the drug because you're feeling better. If you do, signs and symptoms will gradually return.

Effects of other substances
Certain medications, supplements and even some foods may affect your ability to absorb levothyroxine. Talk to your doctor if you eat large amounts of soy products or a high-fibre diet, or if you take any of the following:

  • Iron supplements including multivitamins that contain iron
  • Cholestyramine (Questran), a medication used to lower blood cholesterol levels
  • Aluminium hydroxide, which is found in some antacids
  • Sodium polystyrene sulphonate (Kayexalate), used to prevent high blood potassium levels
  • Sucralfate, an ulcer medication
  • Calcium supplements

Complementary and alternative medicine
Most doctors recommend levothyroxine, the synthetic form thyroxine (T-4). However, natural extracts are available that contain thyroid hormone derived from the thyroid glands of pigs. These products — Armour Thyroid, for example — contain both levothyroxine and triiodothyronine (T-3).

Doctors have a number of concerns about natural thyroid hormone extracts such as Armour Thyroid, including: The balance of T-4 and T-3 in animals isn't the same as in humans. The exact amount of T-4 and T-3 in each batch of a natural extract product can vary, leading to unpredictable levels of these hormones in your blood.

There's no scientific evidence that natural extracts of thyroid hormone offer any advantage over synthetic versions.

By Mayo Clinic Staff
Feb 1, 2007
© 1998-2008 Mayo Foundation for Medical Education and Research (MFMER). All rights reserved. A single copy of these materials may be reprinted for non-commercial personal use only. "Mayo," "Mayo Clinic," "MayoClinic.com," "Embody Health," "Reliable tools for healthier lives," "Enhance your life," and the triple-shield Mayo Clinic logo are trademarks of Mayo Foundation for Medical Education

≈≈≈≈≈≈≈≈≈≈      

Top

Newsletter archive
Feb 2008   | April 2008  | August 2007   | December 2008
Feb 2007   | May 2007   | August 2007   | December 2007
Feb 2006   | May 2006   | August 2006   | December 2006
Feb 2005   | May 2005   | August 2005   | December 2005
2004 Newsletters still avialable on our old site.


"Fair Use" notice, if you wish to copy, reproduce or otherwise use material or information contained at this site; PLEASE READ.


ME/CFS International Awareness Day



Return to Home page  | Contacts | Contents |
Email  |  |