Fund Launching To Support ME/Chronic Fatigue Syndrome

It is estimated that at least 25,000 people in Aotearoa have Myalgic Encephalomyelitis, also known as Chronic Fatigue Synrome (ME/CFS). A new fund to support people experiencing this condition is being launched in Nelson this month and the organisers hope to raise $50,000 to kickstart their efforts.

The ‘Zest for Life Fund’ has been established in the memory of Zascha Mann, a young Nelson man who died in July 2021 as a result of a long struggle with this debilitating condition. The name Zest for Life was chosen in recognition of Zascha’s exuberance for life as an adventurer, traveller, skier, mountain climber, and kayaker.

In Zascha’s moving departure message he said ‘being stuck in bed 24/7 is hell for me.’ He went on to finish his message with these thoughts; ‘Firstly, I encourage you all to fiercely be your authentic, wonderful, weird selves. The world needs more authentic humans. Secondly, please do what you can to make the world a better place, it needs people to fight for it.’

Nelson woman Angela Palmer, who has helped form the Fund, said that it was those final words from Zascha that made her determined to do something to help others with ME/CFS.

‘Zascha’s death must not be in vain. We must ensure that these people, lying at home in bed, often isolated and unable to summons the energy for even a phone call or email, let alone being functional enough to cook a meal, are fully cared for. As a society we are letting these ‘hidden people’ down. If we can make any difference in improving the lives of people like Zascha, and their dedicated carers, then we simply must’, Palmer says.

ME/CFS is considered a major disease we know very little about; much more research needs to be done and there is a serious lack of funding around this. And the severe patients, like Zascha, have desperately difficult lives.

The Zest for Life Fund is being run through the Top of the South Community Foundation, and will provide small grants to be used for predominantly practical help enabling enhanced wellbeing and reduced daily living pressures, and/or opportunities for respite for those with Chronic Fatigue, and their carers, in the Nelson and Tasman regions. Donations to the fund will go directly to the Foundation and then be invested.

Palmer believes people with the condition often feel like they are a burden and asking for help can be a barrier to getting relief. The small cash grants could be used for such things as assistance with driving to appointments, help with housework, cooking and advocacy, or respite care. It is believed to be the first community fund in New Zealand set up with an explicit purpose to help provide such practical care.

The fund is being launched near the Maitai River in Nelson where a plaque will be unveiled in Zascha’s honour. Guests are advised to wear gumboots and will be serenaded by a saxophone with cows probably in attendance.

The 'Zest for Life Fund' Launch:
 

Date : Saturday August 27th

Time: 10-11am
Location : Maitai Valley

Meet as a group at the carpark of the Maitai cricket ground at 10am. Its on the left, opposite the farmhouse, after Black Hole and before Sunday swimming hole. It is a 10 minute walk along the river to a special spot where Zascha’s ashes have been spread and a memorial plaque has just been placed on a bench. This plaque will be unveiled by Miriam Gratton, Co-ordinator/Advocate for the Nelson Bays ME/CFS & FM Support Group. 
 

**The track is muddy. Please wear good walking shoes or gumboots if it has been wet.**
** Wet weather back up venue – FAIRFIELD HOUSE**

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