ME/CFS Charity in New Zealand Hiring

[CFSNZ]

ME Auckland is looking for a part-time Operations Manager to support our day-to-day services. This is a paid position based in Auckland, New Zealand. Applications close 28-March.

If you know someone passionate about helping those with ME/CFS and who has the right skills/capacity for the role, please encourage them to apply here

To learn more about our charity, please visit our website

Feel free to post below if you have any questions

Advert copied below:

Operations Manager – Auckland

ME/CFS Support (Auckland) Inc. is a charity that supports Aucklanders with Chronic Fatigue Syndrome and/or Fibromyalgia.

We are seeking a part-time Operations Manager for 5 - 10 hours per week. Increased hours as otherwise agreed.

The core purpose of the Operations Manager is to oversee the day to day running of ME/CFS Auckland's services, especially the management of field workers and volunteers.

Primary responsibilities include:

• management of fieldworker(s) and volunteers;
• building relationships with key community organisations;
• responding to member enquiries; and
• advising on health and safety policies and relevant procedures and legislation

The role also includes other administrative and communication tasks as required.

The Operations Manager position presents an exciting opportunity to help shape a new charity and be part of a small but growing organisation.

If you have excellent communication, interpersonal, organisational and teamwork skills we would love to hear from you. Initially the role will be based from home, so the ability to work independently is crucial.

Relevant management experience in the area of Community Organisations or Social Services would be advantageous, but we would encourage people with general management experience to apply.

To apply for this role, or to request a full position description, please contact Yvonne Bristow by e-mail: yvonne.b@meauckland.org.nz

Applications Close: 5pm Tuesday March 28th 2017

 

[CFSNZ]

Quick update - we have now found a great Operations Manager, Jaime Rose-Peacock! We are looking forward to her spearheading progress towards more support for ME/CFS in the Auckland region.

We are now hiring a field worker to provide on-the-ground support to sufferers in Auckland. If you know someone empathetic, who has social work qualifications and is passionate about helping Aucklanders with CFS/FM, then please share the job advertisement with them.

https://www.seek.co.nz/job/33274404…

Applications close 12 May.

Every major city in NZ has its own CFS field worker except our largest city, Auckland.

Field workers make a difference in the lives of sufferers through advocating for them, convening support groups and ensuring sufferers receive the services they require. No one should have to go through CFS/FM alone, so we are looking forward to getting a field worker to support Aucklanders with these illnesses

 

[Cohen2]

@CFSNZ Does Dunedin have field worker? As far as I'm aware we don't, I'm regularly in touch with Heather but she's never mentioned it. Or are we not a major city? lol

 

[Hutan]

Christchurch has one. I found her worse than having no support at all.

During my first call with her, I learned all about her family's problems and established that she had no idea about sources of help for my son's education or other support for teenagers with ME. She had no idea about doctors who are useful for people with ME in Canterbury.

She had no idea about recent research and is quite happy with the approach of the local ME/CFS support group (as set out in its website and summed up as 'you are delicate flowers who can't handle stress and you need to calm down and stop using aluminium and microwaves'). No, no we aren't and we don't. ('Ah well, dear, we accept all viewpoints'.)

She rang me again around a year later and didn't seem to have any recollection of anything I had told her. Her idea of support seems to be an annual phone chat to give me an update on her recent holidays. Each of her phone calls left me feeling frustrated and alone.

A field worker could potentially be such a support.

Who funds these roles?

 

[daisybell]

I have to admit that I'm not a member of my local group... I don't feel that they have anything to offer me - and I know that my knowledge about the disease and the research is more extensive than the field officer's. Perhaps that's selfish of me not to become a member in order to support others - but I don't have the energy to go to regular meetings anyway.

 

[CFSNZ]

@CFSNZ Does Dunedin have field worker? As far as I'm aware we don't, I'm regularly in touch with Heather but she's never mentioned it. Or are we not a major city? lol

'Hi Cohen. Dunedin made the cut for "major city" (which may not be my best choice of words ). I understood Heather filled a bit of a field worker role for MEISS when she wasn't working for ANZMES. Though from what you say perhaps she's more of a support group coordinator than someone who does the full home visits, assessments, advocacy, etc?

 

[CFSNZ]

Hi @Hutan, sorry to hear about your experience with the local support down in Christchurch.

We would be taking a different approach in Auckland, which certainly wouldn't intrude on anyone's use of aluminium or microwaves

By way of example, there are some great specialists up here which most of our members are unaware of. One Cardiologist in Auckland specialises in Dysautonomia, which encompasses a number of disorders including POTS. A number of our members with ME/CFS had severe POTS which they've been able to manage after seeing this Cardiologist.

She puts them on a comprehensive management programme, with frequent follow up consultantions to tweak doses and support them towards better POTS management. E.g. Florinef to expand blood volume, Midodrine as a vasoconstricter, medical-grade compression stockings to combat drops in blood pressure and faintness, Modofinal for cognitive function, saline, etc.

The outcome is not a cure, but she gives many of our members the tools to combat random drops in blood pressure which have plagued them for years. All stuff that's more on the medical end of the spectrum, rather than alternative.

We've had some go from bed bound to part time work and expanded quality of life, which was awesome to see.

One of our visions would be for the field worker to make members aware of practitioners and credible sources like this. Besides that they'd attend things like WINZ with sufferers to stick up for them and advocate for their position, and support them through the NASC process if home services were needed.

I struggle with being told that ME/CFS sufferers are delicate too, or general naturopathic advise like avoiding microwaves. I saw one video where the speaker tried to pass ME/CFS off as a disorder caused by being a hypersensitive person. Wow!...

The roles are generally funded by grant income. Volunteers like myself crack out grant applications to COGS, Lotteries, gaming trusts, private funders, etc. The success rate is low since ME/CFS isn't well recognised, but with a lot of persistence you can raise the money for a salary.

I hope things get better in Chch. I was sad to see you guys left off the Dr Lapp's recent tour.

 

[CFSNZ]

I have to admit that I'm not a member of my local group... I don't feel that they have anything to offer me - and I know that my knowledge about the disease and the research is more extensive than the field officer's. Perhaps that's selfish of me not to become a member in order to support others - but I don't have the energy to go to regular meetings anyway.

Yeah, many on the PheonixRising community have a truly inspiring level of knowledge on ME/CFS. Suspect if you've been active on here for a few years you wouldn't learn a lot about the latest research from a local support group. Companionship and learning about good local practitioners would be the main value-add from attending if you already well versed in the research.

Hope you get the energy to be able to get out more. So hard for many people with ME/CFS to make it to a regular meeting.

 

[Cohen2]

@CFSNZ I think Heather does try to fill a field worker role but she is understandably busy with everything else she does. She did come to specialist appointment with me which helped a lot.

Would you be able to pm me the name of the cardiologist you mentioned?

 

[CFSNZ]

@Cohen2 Cool, think I've done the PM right. If not flick me an email

patrick.h@meauckland.org.nz