Rest Assured Respite Charitable Trust

Those with long term health conditions need a place which offers both them and their carers respite.

The ages and symptoms of those with illnesses such as Myalgic Encephalomyelitis (ME) Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) mean the conventional models of care are not always the best option for them. The video on this page will explain a little more about ME/CFS and our planned respite facility, as will the videos on our website. We ask you to share our vision and this page as much as you can. By working together we will be able to create this haven - it will change and save lives. Please join us today and be a part of the team bringing this into reality as soon as is possible. Our first target is to raise $1,000,000 to provide a facility.

It is our aim to site the respite facility in the Thames area. It makes it more readily accessible to people from Auckland, Waikato and the Bay of Plenty.

ME/CFS affects men, women and all age groups - from young children and teenagers through to the elderly. It affects all ethnicities. It is believed approx. 20,000 New Zealanders have it. There was an outbreak in Tapanui which also gave it another name “Tapanui Flu”.

It's incidence peaks during adolescence and midlife.

1% of those who are diagnosed with glandular fever go on to develop ME/CFS.

There is no suitable respite for the more severe. Yet the number of those with ME/CFS is more than four times the number of those with Multiple Sclerosis (MS) for example and their symptoms equally as severe.

A recent NZ Survey showed that those with ME/CFS are in the lowest 10% for functionality. More disabled than those with living with MS, Parkinson's or Heart Disease.

Rest Assured Respite Charitable Trust is a newly formed Charity which aims to provide respite primarily but not exclusively for those with ME/CFS/FM.

It will be a place where those with ME/CFS/FM, along with similar illnesses or care needs, feel comfortable, safe and understood.

This will also provide the opportunity for carers to be trained in how best to care for those with ME/CFS/FM.

Those with the illness will be given ideas on how to manage their illness, especially if newly diagnosed. Recent biomedical research indicates an abnormal physiological response to exercise in ME/CFS patients. It's important they pace - rather than push themselves.

Other services will be available at the patient's request e.g. social worker, counsellor, chaplain, ME/CFS field worker.

There will be options for differing lengths of stay and levels of care.

Visiting speakers will give talks on relevant subjects, eg physiotherapists who understand the physiological nature of the illness, counsellors who understand the grief/loss/relational aspect and dieticians who can give practical advice.

Ideally these talks will be open to the public as well, taped and then available as a resource from an onsite library.

A recent Survey run by the Trust, opened our eyes even more to the desperate need of those in the community with ME/CFS/FM who need a place to go when they feel overwhelmed by their illness and have no one to care for them. It reminded us again that many had lost educational or career opportunities, income, partners or spouses, family members and friends because they could not understand the illness or carry the weight of caring alone .

Some had been left on their own with young children to look after. Others living on their own have difficulty getting food. They are not well enough to shop and when they do get groceries it is often canned food which is eaten cold, directly from the can. If they are too unwell they may go without food. Those who have had the illness many years are now being looked after aged parents. They worry about what will happen to them when their parents cannot look after them anymore.

Families have lost members who had ME/CFS as the patient could not find help and support and lost hope.

This place will offer help, support and hope.