We have over 45 different information sheets on a variety of different topics, and a library of books for our members.

Please contact us if you would like information on any topic.

To Promote Sleep

1. Bed - check your bed. Is it comfortable? Are your pillows at the right height? Are you too hot or too cold?

2. Withdraw from benzodiazepines - They actually aggravate the sleep cycle and can worsen quality of sleep. You have to withdraw these drugs slowly over time.

3. TCA’s: Tricyclics - like amitriptyline, doxepin, nortriptyline are often found to be the most useful medication for sleep and pain relief. Very large doses of these drugs are used as antidepressants but tiny doses such as 5-10mg taken at about 5 pm will often restore the sleep cycle in ME/CFS sufferers. It may take 2-3 weeks before it works properly.

Some people need a little more. Take it 5 hours before bedtime, as it is actually a slightly energizing effect to start with. (It is a body clock organiser) It gives an 8-hour sleep and thick headedness and brain fogginess can occur for the first week while your body gets used to it.

4. Melatonin - is a sleep hormone and is prescribed by your Doctor and can be helpful to some people. Others feel worse on this.

5. Antihistamines - like phenergen or polaramine taken an hour before bedtime can also help if you can’t tolerate Tricyclics.

Diet and Fluid intake

Good Balanced Nutrition Needed

No outlandish diets. Eat nutritionally sensible meals. The more colourful your meals the better as different coloured foods have different vitamins. Spread your calories though your day. You absorb minerals from your food easier than from pills.

Kiwis researching ME/CFS in Kings College Hospital in London have discovered that the sight of a plate of scrumptious looking food you stimulates salivation. Digestion starts in the mouth. When you take a vitamin pill the digestive process does not begin properly as the saliva and stomach juices do not flow as freely. Your vitamins and minerals are thus more readily absorbed from food.

Don’t eat big meals as your stomach can only manage small amounts. Research shows people are often eating more than their body can handle at that time. There is a postprandial reaction, making you feel bloated and tired

The stomach gets overloaded and blood drains from the head into the stomach for the hard work of digestion. This makes people feel dreadful and light headed so they think it is food allergy when it is not. There are some people who are frightened to eat a variety of foods and this makes their problem worse because of poor nutrition.

Frequent Small Meals

Eat little and often. Graze. Eat small amounts every two hours. You can take small sips of water or have gravy with your meal, but separate the main drinking from eating. Eat then drink an hour later. It is now suggested to drink up to 2-3 litres of fluid a day as well. Don’t drink coffee, coca cola, energy drinks, or alcohol as the body finds them hard work. Drink herb drinks, water, fruit juice, weak tea.

In People with M.E. it has been found that food moves slowly through the system if you drink a lot of fluid with your meal it has been found that the food bloats up and moves more sluggishly.

True food allergies are more obvious as you may get hives and rashes etc.

With food sensitivities you often have had too much of one food (i.e. in strawberry season if you eat strawberries every day you will start finding they upset you). Eat no food too often and you will avoid sensitivities. Rotate food.

Lower Fat Intake

The liver is part of the immune system and has to work hard to break down fats. We want to rest the immune systems so watch fat intake.

Reduce Caffeine

Caffeine is hard work for the body to deal with. Watch coffee, coca-cola, chocolate, and energy drinks as they are high in caffeine.

Alcohol aggravates the liver so many people do not tolerate this.

Extra Salt

Extra salt is very important for those with normal or low blood pressure to take extra salt. This increases blood volume as research has shown that some ME/CFS sufferers have low blood volume and low blood pressure. Take a pinch of salt in your drink or a small sprinkle on your sandwich or honey on your toast.

Psychological Impact

Professional help maybe needed to cope with the psychological impact of a serious illness. Dealing with financial, relationship, educational, and work-related issues is also important, and those caring for a person with ME/CFS should not be neglected. The diagnosis maybe made in even very young children, who face extra difficulties such as coping with school and maintaining social contacts.

Those with this illness need to live from day to day as plans are often thwarted. Support is needed and recognition from those around them such as family and friends, health professionals, government agencies, employers etc.

There are a number of Social Welfare benefits, educational options, and support systems available through the appropriate agencies. Contact with others with the illness through local support groups may provide understanding and companionship.

Personal Health Services Assistance for M.E. Patients

Some GPs may not be aware that M.E./CFS patients are eligible for domestic assistance, personal care, child care and care support through Health funding. Recent Ministry of Health clarification is as follows:

ME/CFS is considered a long term chronic illness. Other long-term chronic illnesses are cancer, emphysema, respiratory disease, and diabetes which are also 'disabling' long-term but are not considered disabilities by the MoH to come under them for care. These conditions are funded by District Health Boards. However, obviously the main issue is not what funding stream should be funding a service but what services are available. Carers should still be able to access carer support from their GP.

At Present in NZ there is the Interim Funding Pool that you can access for personal care and home help. This is accessed through the District Health Boards since October 2011. . The Criteria for this is that you need 7 days personal Care plus home help for at least six months a year. This gives those worse affected by ME/CFS help to manage their illness.