6,000+ Aucklanders suffer from this debilitating and misunderstood illness

Imagine this.

Remember a nasty virus that you've once had. The tiredness, headaches, nausea, weakness...

OK, now multiply that by five, and imagine the virus never went away. This is how 20,000 New Zealanders with Chronic Fatigue Syndrome (ME/CFS) live every day.

What is ME/CFS?

ME/CFS is a chronic illness causing incapacitating fatigue. It makes simple tasks (even taking a shower) make sufferers feel like they've run a marathon with a sack of rocks tied to their back!

It's often triggered by a viral infection (though there are a number of other causes). There is no known cure.

ME/CFS can strike anyone and deprives everyday New Zealanders of the things that are important to them - the ability to raise a family, study, relationships, travel, pursue a career, and be independent. The illness affects all facets of their lives. Research in New Zealand shows that ME/CFS affects people's lives as severely as Parkinson's disease and Multiple Sclerosis.

You can make a difference.

Auckland has the largest number of ME/CFS sufferers of any city in New Zealand - estimated at over 6,000 in total. However, it is New Zealand's only large city without a ME/CFS field worker.

A field worker helps sufferers immeasurably. Whether it's through advocating, providing information on illness management, organising support groups, or simply calling on their birthday - these things may sound small but they make a huge difference in the lives of people with ME/CFS.

ME/CFS Support (Auckland) Inc. has been established to hire a field worker, and we humbly ask for your help. As sufferers or relatives of sufferers ourselves we know what a devastating impact this illness can have on lives... and we know how much a field worker can help.

Please support our campaign to raise $35,000 for the annual salary of a field worker. Every dollar will be put towards a field worker and every dollar makes a difference.

Thank you :)

Tracey is a New Zealander suffering from ME/CFS. Here is her story.

How did your ME/CFS start?

I contracted glandular fever in the summer before my final year at University and whilst interning at a law firm. My throat was so swollen and sore that I had to get my tonsils taken out.

I'll never forget the moment I woke from the general anaesthesia and knew something was seriously wrong with me. I simply didn't recover after surgery, and was diagnosed with ME/CFS one month before my final exams were to take place.

I couldn't attend University anymore - some days I'd get to the city by ferry and turn around and go home. I couldn't walk up the hill to get to class.

How has ME/CFS affected you?

In a way, you lose your identity. I literally went through a phase when I didn't know who I was anymore. I had always been very active and healthy. When I lost the ability to get outdoors and do the things I love, it was quite traumatic. I had to redefine who I was within my new limits, and find acceptance with that.

Initially, I couldn't go to the supermarket, cook meals, walk or drive anywhere. I have regained some of my strength over the past two years, but all sports are still completely out of the question for me.

I used to love walking, hiking, and surfing but I don't have the physical capacity to do these activities at the moment.

Watching my friends all graduate was pretty emotional. I was so happy for them, but so devastated at the same time. You kind of lose a part of yourself - like with any illness.

What does ME/CFS feel like?

It's so extremely debilitating, and much more than just "tiredness". Having ME/CFS is like having the flu. All the time. I have constant sore throats and migraines. I get rashes and welts everywhere. I developed new allergies to foods and medication.

I have severe fatigue all of the time. The fatigue is crippling. It's like nothing I had ever experienced before. I also struggle to read books on a bad day. It can be an extremely scary place to be - when you read words, but can't comprehend them.

What would you like people to know about ME/CFS?

No amount of determination will get you out of bed and to the beach or school or work when you have ME/CFS. You cannot will yourself better - trust me, I've tried numerous times over the past two years.

What are you thankful for?

If you have a good support network, then you have a higher chance of recovery. I am so grateful for my family and amazing partner Eddie.

I am optimistic that if people are made aware of the severity of the illness, and the right support mechanisms are put in place, then others will have the chance to slowly regain their strength too. We are surrounded by so many tools that can help on the road to recovery, but when you are ill, and financially limited, you simply can't access them. It becomes a Catch 22.

I'm so excited about the possibility of fundraising for a support person to help those who didn't have the help I did.

Over the past two years I've steadily been able to progress my health to the point that I can work again, and while it may not be in the field I intended, it means that I can support myself financially.

Being able to go to work, cook dinner, or do the grocery shopping takes on a whole new meaning when you haven't been able to do it for months!

It's great that scientists are finally quantifying the immunological and inflammatory biomarkers present in people with ME/CFS, and maybe one day we will know exactly what causes it!