12 May 2002

MEDIA RELEASE

(Embargoed 5 past midnight Sunday 12 May 2002)

Good News at Last for ME Sufferers

"Today, on ME Awareness Day, thousands of ME sufferers throughout New Zealand have good reason to celebrate," said Alliance Spokesperson for Health Phillida Bunkle. "It is wonderful news that the Acting Minister of Social Services and Employment Ruth Dyson has agreed that the Government will undertake to develop policy around the way in which WINZ manages the needs of people with ME.

"This news follows the announcement by the Chief Medical Officer of Health in Great Britain that myo-encephalitis, also known as chronic fatigue syndrome, is a legitimate physical condition which needs clinical guidelines as well as a special policy from social welfare. Since then, 150 British MPs from both major parties have committed to supporting the timely enactment of these changes."

Ms Bunkle said it was marvellous that Ms Dyson had decided to act decisively on this issue. "ME sufferers in New Zealand have struggled to have their condition recognised, often when their condition made the struggle almost impossible. The fact that the government has agreed to these steps will be an enormous relief to this previously marginalised group of people with disabilities."

It is also encouraging, added Ms Bunkle that, as part of this policy development, Ms Dyson has included provision for ensuring adequate access to WINZ officers and appropriate guidelines for facilitating recognition of the illness as legitimate, as well as interaction between WINZ personnel and persons with ME.

"I have received a large number of letters from ME sufferers who cannot even move about their houses because of the severity of their condition, but who have been requested to report to a WINZ office in order to be assessed for a sickness benefit. The reason they are seeking a sickness benefit or disability allowance is because they are too sick to take care for themselves, yet they are required to get to a WINZ office to prove they are ill.

The following is a sample from one of these letters, from a talented young woman:

I was twenty four. I had just finished six years study at Otago University coming out with a Commerce degree in Economics and a Law degree. The year 1999 also saw me successfully admitted to the bar. I had been working in my first job as a lawyer for a government department for two months when I felt a bit sick one day, like I was coming down with something, and now more than two years on I haven't been able to go back ..

As I wasn't working I decided to get in touch with WINZ as my sick pay had run out. Id was asked td come in for an interview. I couldn't understand how they expected me to come in for an interview when some days I could hardly walk to the bathroom. However, they seemed to think it normal that people who were too sick to work should be able to just pop down to the local WINZ office, wait half an hour and then go through an interview. I managed to do as they said but it caused me a lot of pain and I collapsed in the middle of the interview. WINZ also seemed to think that any further paperwork they needed from me could just be dropped off whenever I felt like it. ...

If WINZ are dealing with people who are as ill as I was they should be told of the seriousness of this illness and that people with M.E. cannot be expected to just waltz into one of their offices at the drop of a hat. Obviously we are not like other sickness beneficiaries they deal with.

"Not only is Ms Dyson opening the way for better access to WINZ, but she has also agreed to ensure the disability allowance is available to help buy dietary supplements, and alternative therapies," said Ms Bunkle. "These have been shown to bring substantial relief to many sufferers but, as the following quote shows, people living on a benefit cannot afford these therapies or have had to abandon them because of cost. Ms Dyson is to be respected and congratulated for the realistic stand she is taking."

I am 21 years old and was diagnosed with CFS more than 5-1/2 years ago. Over that time I have been reduced from an academic, scholarship winning 6th former to a state where I have been unable to manage any study at all.

On my leaving certificate in Form 6, my teachers wrote "We expect a lot from K academically in the future". The disappointments and restrictions for me have been huge. At one stage planning to become a Doctor, I have had to remove myself from any conception of University education and struggle to live an "existence" at home instead.

I do not believe this is an 'illness of the mind', despite what some health professionals and others may think. I have had the potential in the past to achieve many things and I have never lost my desire to reach that potential. The cost of this disease to any sufferer is huge personally and I have even heard it classed as the most debilitating illness one can suffer from, which I would tend to agree with.

While I realise there are not unlimited funds in the health budget, I would urge you to consider the integration of natural medicine into the public health system in some capacity. Sufferers, who are generally intelligent, highly-motivated people, once capable of well-paid employment are forced to live as beneficiaries with huge bills for natural medicines or treatments in the effort to receive some respite. A lot of sufferers are forced to choose between eating into hard earned savings or going without treatment that may help. Even worse, some don't have any savings left to use.

I would estimate that my illness to date would have cost in excess of $30,000, some of which a disability allowance from WINZ has covered (please note however that many M.E. sufferers have been unable to obtain this allowance), and the rest which my mother has helped pick up.

There is also a huge loss of earnings, the benefit maximum coming in at a little over $10,000. There are many quiet sufferers out there whose plight is worthy of recognition and support.

ENDS

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