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 16, May 2007.Newsletter.

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

Greetings.
The year marches on! The next major event on the CS calendar is International CFS Awareness Day, May 12th each year. Due to ongoing work commitments, we are unable to hold meetings in May. Also, we will not have the publicity stand in Cairns as we have had for the last 3 years.
With this newsletter, we enclose small handouts about CFS Awareness Day. Any participation in this annual event will rest heavily with you - our contacts - placing these Awareness brochures on public notice boards or handing them out.

CFS OFFICE
We still need an office assistant. At this time, the office is not open regularly. If you phone, please leave your name and number, and your call WILL be returned as we are able.

THANKS
    Thanks to the Reef Casino Community Benefit Fund. They have enabled this support group to purchase a new computer and set up an office.

MEETING UPDATE
As advised in the previous Newsletter, I am unable to arrange or attend meetings at this time. 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 !

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

LIBRARY
  We are STILL missing several books.
Please check to see if you have “Chronic Fatigue Syndrome – A Treatment Guide”, by Verillo and Gellman. Please return all books that you have out on loan.
Martin Truman has donated a relaxation CD that is available for loan.

LOCAL CONTACTS
Please feel free to call local contacts:
Atherton:Neil Reynolds4091 2970email
Cairns:Neville Pedler4053 6187email
Cardwell:Joy Dickson4066 0178email
Gordonvale:Irene Murgatroyd4056 1148
Innisfail:Gwen Hammerton4063 2334email
Lake EachamJohn Cuff4095 3063email
Mareeba:Christel Venturi4092 3287
Mossman:Sue Dennis4098 1637
Ravenshoe:Les Buglar4097 0132
Smithfield:Peter Cummins4057 5920
Townsville:Ashley Hinds4778 3560email
Townsville:Marta Botta4773 9972
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.

Great truths little children have learned

  • No matter how hard you try, you can’t baptise cats.
  • When your mum is mad at your dad, don’t let her brush your hair.
  • If your sister hits you, don’t hit her back. They always catch the second person.
  • Never ask your 3 year old brother to hold a tomato.
  • Don’t sneeze when someone is cutting your hair.
  • Never hold a dust-buster and a cat at the same time.
  • You can’t hide a piece of broccoli in a glass of milk.
  • Don’t wear polka-dot underwear under white shorts.
  • The best place to be when you’re sad is grandpa’s lap.

Who is rich and who is poor?

One day the father of a very wealthy family took his son on a trip to the country with the express purpose of showing him how poor people live. They spent a couple of days and nights on the farm of what would be considered a very poor family. On their return to the city, the father asked his son, "How was the trip?"

"It was great, dad".

"Did you see how poor people live?"

"Oh yeah", said the son.

"So tell me, what did you learn?" the father asked.

The son answered, "I saw that we have one dog and they had four. We have a pool that reaches to the middle of our garden, and they have a creek that has no end. We have imported lanterns in our garden and they have the stars at night. Our patio reaches to the front yard, and they have the whole horizon. We have a small piece of land to live on and they have fields that go on beyond forever. We have servants who serve us, but they serve others. We buy our food while they grow theirs. We have walls around our property to protect us, they have friends to protect them."

The boy's father was speechless. Then his son added, "Thanks dad for showing me how poor we are".

Isn't perspective a wonderful thing? Makes you wonder what would happen if we all gave thanks for what we have, instead of worrying what we don't. Why not spend a little time to refresh your perspective - appreciate everything.

Copied from Connect Magazine page 11 March 2007
INFORMATION PAGES.

Some excellent information has become available in the last 3 months. Space and time does not permit us to include very much of it here, but we will offer the headlines. If you would like printed copies, please let us know.

From the ME/CFS Society of NSW:-
  1. A series of articles from people about their struggles with illness.
  2. The effect of Cancer treatments on CFS
  3. The USA Centre for Disease Control has found indications of a genetic basis for CFS
From the Queensland Association:-
  1. Dazed and confused: managing cognitive symptoms
  2. Drained by the brain
  3. Sleep is vital for good health
  4. Reports from the last International CFS Conference
  5. Elimination diet for CFS patients.
From the Victorian CFS Society:-
  1. The loneliness of the long-distance sufferer.
  2. The biology of stress
  3. Matters of the brain
  4. Hysterical?? Manifest our symptoms for sympathy !
  5. Men with CFS
Other sources of information:-
  • “Study finds large doses of vitamin C reduce stress, prevent disease.”
    From the publication “Uncensored”, Issues 6 January 2007.
  • “Wakeup foods for fatigue”, Treating medical problems with healing foods.   Source unknown.

Tired or Toxic?

Understanding multiple chemical sensitivity.

Note: This article originated in the U.K. We in Australia often use the terms “CFS” and “ME” interchangeably. There are differences, but for the purposes of this article we suggest that either are acceptable

If there is a condition that suffers from even less recognition than M.E. or CFS, it is multiple chemical sensitivity. Yet the two conditions overlap in a proportion of patients, who struggle to manage without medical support. Richard Dunn and Theresa Coe explain what is known about MCS and what help is available.

Many people with M.E. find themselves over­sensitive to chemicals, so that exposure to everyday products like perfumes, newsprint or household cleaners can produce allergic-type reactions or make their M.E. symptoms worse.

In the minority for whom these reactions are widespread and severe, daily life can become extremely difficult, and yet it is often hard for people in this position to get suitable advice and support from the medical profession. This is because while standardised diagnostic criteria and strong patients lobbying, have led to the impact of M.E./C.F.S. being recognised by most medics, this is not yet the case for multiple chemical sensitivity (MCS).

A changing environment

Rates of diseases with potential links to chemical exposures have been increasing nationwide. For instance, asthma in children under five increased by 160% between 1980 and 1994 (CDC, 1998) while autism has increased by 1,000% since the mid 1980's (Chakrabati and Fombonne, 2001; Byrd, 2002). Not surprisingly many people also believe there is a link between our increasingly chemical environment and the onset of M.E. - type illnesses which appear to be more prevalent in the industrialised world.

Prof. Anne Steinemann from the University of Washington explains that complex links between pollutant exposures and health effects may have obscured perceptions of risk. 'Exposures do not always manifest immediate and dramatic health effects; rather, they can cause subtle, gradual health damage. And even when they do cause immediate effects, there is the troubling tendency to misdiagnose or misattribute common symptoms caused by exposures.

For instance, exposure to pesticides can cause acute symptoms that mimic the flu....and simultaneously cause chronic damage to the endocrine, neurological, and immune systems (e.g. National Institute for Health report, 2003). Thus, we are regularly exposed to hundreds of industrial pollutants from everyday products and places, that persist in our bodies and in the environment, and that are linked to numerous diseases and health effects. Yet...no law or agency specifically protects indoor air environments, which is where we spend more than 90% of our time (Klepeis, et al. 2001), and which accounts for most of our pollutant exposures.

Suggestive symptoms

Reactions to chemicals in sensitive individuals are quite diverse and can range from breathing problems, tingling lips and burning mouth, throat or eyes, to runny nose (rhinitis), nausea, severe headaches, brain fog and skin rashes.

Usually the onset of these types of symptoms is immediate following exposure to the chemical. The types of products to which susceptible people react are wide-ranging, from timber sprays and pesticides (e.g. in cat flea treatments) to non-organic paints and perfumed toiletries.

It's important to clarify the difference between classical allergy and chemical or food sensitivity/intolerance. In classical allergy, the reaction is to a 'protein band' (e.g. in nuts, housedust mites or pollen) and can be tested for on the NHS. But chemicals have no such protein band, so the mechanisms causing a reaction in chemically-sensitive people are different to those seen in hayfever, for instance.

One organisation doing a great deal to help people with chemical sensitivity is the charity Allergy UK. Judith May and Lindsey McManus work as helpline advisers in the MCS division of the charity, which was set up in 2002 in response to the increasing volume of calls from people wanting advice on dealing with reactions to chemicals.

In its recent survey of enquirers and members with chemical sensitivity, Allergy UK told us that 40% of respondents also had M.E. (do contact the charity if you'd like to fill in their questionnaire).

Judith and Lindsey stress that most callers to their helpline know what they're reacting to, and want advice on chemical-free products or treatments that could help. The team is fortunate to have the support of a wide range of medical advisers including a nurse specialising in MCS, who helps them respond to medical queries from callers.

Little known about cause

In sensitive individuals, it's generally thought that MCS develops after exposure to a large amount of a chemical, either in one big dose (maybe through involvement with sheep dipping or the use of chemical pesticides such as timber sprays in the house) or through ongoing small exposures (such as to volatile organic compounds or VOC's from photocopiers).

Once an individual becomes sensitised to a specific chemical, subsequent low doses cause the same unpleasant effects as a very large dose, and after the initial reaction, some patients report becoming sensitised to other unrelated chemicals, a process known as the spreading phenomenon.

While there is general agreement about what might trigger MCS, there is no consensus as to the actual mechanisms which cause the reactive type symptoms.

Some say that dysfunction of the immune system, neurological abnormalities, or direct damage to the nervous system by chemicals are important predisposing factors, while others cite enzyme depletion and micro-nutrient (vitamin and mineral) insufficiency. Certain researchers believe that genetic factors and early life history (for example under- or over-exposure to potential allergens or over-prescription of antibiotics) may also be important in determining susceptibility to MCS.

However, Dr Sarah Myhill, who specialises in environmental medicine and M.E., explains that in a small proportion of MCS cases, chemical reactions are clearly due to an inappropriate response by the body's antibodies, which are part of the immune system. More severe antibody-mediated reactions, such a well-recognised allergic reaction known as anaphylactic shock (as seen in peanut or bee sting allergy) can be tested for on the NHS.

In addition, Dr Selwyn Richards, Consultant Physician as the Dorset CFS/ME clinic, notes that 'there is a clear overlap with mental health problems but that is not the same as to say that these are the cause. The role of sensitising chemical exposure and what then perpetuates chemical sensitivity is yet to be defined with both physical and psychological pathways being advocated by different protagonists.'

Overlap with M.E.

Both MCS and M.E. are poorly understood by most NHS medics, so it isn't surprising that the nature of the relationships between the two remains unclear.

Dr Richards told us that 'in CFS/ME there are clearly those individuals who would fit the label as having multiple chemical sensitivity. These are people whose health is made worse by exposure to a variety of hazards. In some individuals these are more chemical in nature such as perfumes, cosmetics, antibiotics, alcohol, cigarette smoke, the smell of new carpets and cars etc.'

He explained that exposure to chemicals might aggravate the symptoms of such a person's M.E. in the same way that sensory input (e.g. bright lights or loud noise), overdoing it physically or mentally, or catching a virus can. 'Viewing multiple chemical sensitivity in CFS/ME from this perspective, it can be seen that fatigue and malaise can be triggered by a variety of internal and external stimuli, of which chemicals are but one.' Dr Myhill hypothesises that general sensitivity in people with M.E. may be due to a malfunction in the body's 'gating mechanism' which modifies stimuli coming in from the outside world.

However, Dr Richards has a theory about why MCS might be a particular issue for some people with M.E. 'One plausible explanation is central sensitisation. This means that the central nervous system is sensitised to normal sensations, causing symptoms of ill health when exposed to everyday levels of "safe" chemicals'.

Dr Myhill explains that this may be due to "Pavlov's dog syndrome.' This is a well-documented physiological reaction whereby the nervous system protects itself against potential further damage (e.g. from toxic exposure) by learning from the previous bad reaction to anticipate harm to the body, and thus throwing up symptoms in response to small amounts of that chemical to encourage avoidance. She finds that often, if the offending chemical is avoided for a time, this type of sensitivity can fade away.

Another possibility was suggested by Judith and Lindsey at Allergy UK: 'We believe that people with M.E. are more prone to MCS because their immune systems are so low; their body can't fight chemicals are easily as a healthy person's, whose liver would be able to detoxify them quite quickly.'

It may also be that digestive problems in some M.E. patients mean that key nutrients are not absorbed properly, a key factor as we need optimum levels of micronutrients to detoxify chemicals efficiently. As Dr Myhill explains: 'Magnesium - is necessary to stabilise allergy or MAST cells. Being deficient in this mineral can make these cells more irritable so they release histamine more readily.'

Diagnosis and test

In some cases, reactions to chemical irritants may be less immediate. For example, if people sometimes come home from work feeling much worse than on other days, this might be because of exposure to chemicals from the Xerox machine (or to air-conditioning or other staffs perfumes) - in cases like this keeping a diary may help tie in symptoms to the source of irritation. Dr Myhill adds that an indicator for subtle chemical sensitivity would be if your M.E. symptoms are better when you're out of the house in a clean unpolluted environment (e.g. by the sea).

Because MCS is still poorly understood, and differs from classical allergies, getting an official diagnosis can be difficult. Allergy UK warns that 'there is a real danger that patients are misdiagnosed, usually as suffering from a psychiatric condition'. This is less surprising when you consider that the biological effects of poisoning (e.g. from organophosphates) include psychiatric symptoms like depression, anxiety or psychosis.

Judith and Lindsey pointed out that unfortunately very little help is available on the NHS. Most allergy clinics don't recognise or treat chemical sensitivity because it doesn't follow the classical allergy pattern of being a reaction to a protein band. An exception is Dr Michael Jenkins' allergy clinic at the Royal London Homeopathic Hospital in London, where they use enzyme potentiated desensitisation (EPD) to treat food and chemical intolerance. However, if you have sensitivity through your skin (for example, a reaction to dyes in fabric that causes a rash) then you can be referred to a dermatologist on the NHS.

Other formal tests which have been used include the intra-dermal skin challenge (where small amounts of a possible allergen are injected) while Dr Myhill recommends Biolab's lymphocyte sensitivity tests, which measure changes to white blood cells in the presence of various chemicals.

Minimising exposure

An important first step in the treatment of MCS is getting expert support and advice. Being believed, and reassured that the symptoms are real, is especially important if you're not receiving support from your GP. If can also help to explain to friends and family the nature of your condition (e.g. so that they don't wear perfumes when visiting you) and a number of simple booklets explaining MCS are now available from charities like Allergy UK.

The main practical step to help improve matters in those affected is avoidance, so that contact with harmful substances is minimised. But this is easier said than done, especially if you're badly affected.

Allergy UK provide this advice: your own home (or at least one room within it) needs to be a safe haven. Make sure your house is well-ventilated, and try to avoid using aerosols, air fresheners and any cleaning products (such as washing powders/liquids and fabric conditioners) with a chemical smell or to which perfumes have been added. When decorating, choose solvent-free paints which are low in chemicals.

Also, avoid pesticides and other powerful chemicals in the home if you know you're chemically sensitive - for example, seek advice for alternative methods of dealing with serious problems such as head lice or pet fleas, or if you need to undertake building works such as damp-coursing or woodworm treatment. Fortunately now, product ranges of everyday items which are free from chemicals are now becoming available from companies like The Healthy House.

Switching to an organic diet seems to help a lot of people, probably because this removes the chemicals they would otherwise be taking in through foods. Vitamin and mineral supplement may also be of benefit as these may help support the immune system and the detoxification process.

Living in a city on a busy traffic route may make life worse, but so can country life if nearby farmland is frequently sprayed or treated with agrochemicals. If you're seeking to move to a cleaner environment, uncultivated downland or moorland are the least chemically contaminated places, while locations with prevailing winds from the Atlantic are also likely to be beneficial.

Treatment options

Dr Richards explains: 'There is no evidence-based treatment for MCS, but there is not shortage of treatments without good evidence. One study from the USA (where the diagnosis is also controversial but more readily made) of 900 sufferers of MCS found they had tried 101 different treatments including environmental medicine techniques, holistic therapies, nutritional supplements, detoxification techniques, Eastern-origin therapies, prescription items and others.'

In this study, creating a chemical-free living space and chemical avoidance were rated by 95%' of participants as helpful. The cost of treatment however was high: individuals had consulted an average of 12 healthcare providers and spent over one third of their annual income on healthcare costs (Environ Health Perspect, 2003).

Some more 'medical' treatments are offered by private doctors, such as those registered with the British Society for Ecological Medicine (BSEM). One is neutralisation, where 'therapeutic doses of a trigger are given to the patient on a regular basis to neutralise negative reactions. A second is EPD, as mentioned earlier, which aims to reprogram the body's immune system to respond more appropriately to chemicals, resulting in desensitisation.

In some cases, funding is available to see a BSEM doctor if serious chemical sensitivity has been established and no treatment is available locally on the NHS. Dr Myhill, as one of the BSEM doctors recognised by the General Medical Council as having a certain standard of excellence in treating allergies, currently has seven primary care trusts (PCTs) funding patients to see her for treatment of chemical and food intolerance. She says 'Applying for NHS funding is a good way to raise awareness of chemical sensitivity as a growing medical problem. The PC may initially turn you down on the basis that MCS is not a recognised illness, but the BSEM can provide research evidence to the contrary.'

Hope for the future

Although MCS is still regarded by many as a controversial diagnosis, positive things are starting to happen. Around the world, patient pressure groups are emerging to support those who are ill and to campaign for recognition and change. In Britain, Allergy UK provide a dedicated MCS helpline and newsletter, fact sheets, and an active local support network, as well as campaigning to raise public awareness of this growing problem.

Such organisations are making a real difference to peoples' lives. Judith and Lindsey told us" -'We chemical sufferers on the path back to a level of health that means being able to participate in ordinary life again...Two years down the line we're hearing from people who were very, very ill with MCS when they first contacted us, but have since turned a corner, often through avoidance, treatment from environmental doctors to boost the immune system, and dietary changes.'

Dr Kelly Morris comments:
Never before has humankind released so many chemicals into the environment as we do today. Limited evidence and plenty of anecdotal experiences indicate that reactions to many chemicals are increasing. Reactions appear to include physical irritation, sensory over stimulation, various forms of toxicity, and different immune responses.

So the possibility exists that a reaction to one chemical, say an irritant that disrupts the gut lining or the membranes of mouth, nose and lungs, could facilitate entry of other chemicals into the body to cause other reactions. The end result of repeating this process could produce multiple chemical sensitivity in a minority of people.

Much speculation occurs about MCS and relation subjects, yet the effects of the chemicals we use -in home and garden products, building and furnishing materials, our air, food and water - are sadly not a research priority. Moreover, with any suspected reaction, the burden of proof usually lies with those affected, as health services and regulatory authorities are often sceptical of proposed connections.

However, a recent US review1 notes that much chemical pollution occurs indoors and from chemicals that we choose to use. This indicates that reducing possible chemical contamination is within individual control. Another sensible proposal in the aforementioned review calls for a stricter regulation of any chemicals that are environmentally persistent, bio-accumulative, heavy metals, carcinogenic, or disruptive or toxic to immune, hormonal, or nervous systems. This would add to the international progress already made on some persistent organic pollutants.

    :- Steinemann A. Human exposure, health hazards, and environmental regulations. Environmental impact Assessment Review Vol. 24(2204), 695-710. See www.rachel.ore
Reprinted with permission from Inter Action 52 May 2005 the official journal of Action for ME in the UK. As published in "The Queensland Communicator", Volume 17 No 1, February/March 2007

Alternative health...

HEALTH QUESTION & ANSWER SESSION -
    A look at the humorous side of life
  • Q : I've heard that cardiovascular exercise can prolong life; is this true?
  • A : Your heart is only good for so many beats, and that's it... don't waste them on exercise. Everything wears out eventually. Speeding up your heart will not make you live longer; that's like saying you ca n extend the life of your car by driving it faster. Want to live longer? Take a nap.
  • Q : Should I cut down on meat and eat more fruits and vegetables?
  • A : You must grasp logistical efficiencies. What does a cow eat? Hay and corn. And what are these? Vegetables. So a steak is nothing more than an efficient mechanism of delivering vegetables to your system. Need grain? Eat chicken. Beef is also a good source of field grass (green leafy vegetable). And a pork chop can give you 100% of your recommended daily allowance of vegetable products.
  • Q : Should I reduce my alcohol intake?
  • A : No, not at all. Wine is made from fruit. Brandy is distilled wine, that means they take the water out of the fruity bit so you get even more of the goodness that way. Beer is also made out of grain. Bottoms up!
  • Q : How can I calculate my body/fat ratio?
  • A : Well, if you have a body and you have fat, your ratio is one to one. If you have two bodies, your ratio is two to one, etc.
  • Q : What are some of the advantages of participating in a regular exercise program?
  • A : Can't think of a single one, sorry. My philosophy is: No Pain...Good!
  • Q : Aren't fried foods bad for you?
  • A : YOU'RE NOT LISTENING!!!... Foods are fried these days in vegetable oil. In fact, they're permeated in it. How could getting more vegetables be bad for you?
  • Q : Will sit-ups help prevent me from getting a little soft around the middle?
  • A : Definitely not! When you exercise a muscle, it gets bigger. You should only be doing sit- ups if you want a bigger stomach.
  • Q : Is chocolate bad for me?
  • A : Are you crazy? HELLO Cocoa beans! Another vegetable!!! It's the best feel-good food around!
  • Q : Is swimming good for your figure?
  • A : If swimming is good for your figure, explain whales to me.
  • Q : Is getting in-shape important for my lifestyle?
  • A : Hey! 'Round' is a shape!

Well, I hope this has cleared up any misconceptions you may have had about food and diets.
And remember:

"Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways - Chardonnay in one hand - chocolate in the other - body thoroughly used up, totally worn out and screaming "WOO HOO, What a Ride"

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