News from Aotearoa/New Zealand and the Pacific Islands

Lovely to discover MERespite, an organisation whose list of what the fundraising is for actually looks like it cares, is not so very far away. Nice to know

 

If I recall correctly, ME Respite was created by a former nurse who has severe ME. There is a Board of Trustees and they have an office in Auckland and volunteers. I signed up a few years ago to do mentoring but then became too unwell to do this. They also have a craft group where you can make items for their ME op shops which are in Auckland. I get phone calls every so often asking how I am and if I need help which is nice to know for when I might need more support. The support is mostly Auckland based eg they drop off easy meals but if out of town they can get you a small discount on your online shopping (from the former Countdown, not sure if it is now with it's replacement Woolworths). It's a bit convoluted a process but once learnt could be useful to save money.

 

A google search brought up this doc - never heard of him but states he is developing an interest in MECFS https://www.healthpoint.co.nz/private/specialist/dr-kannaiyan-rabindranath/

 

It would be interesting to know why Simeon Brown presented the petition on ANZMES behalf.

Could it be he just accepted the petition at the door because he was the duty MP of the day to accept petitions? or he has a genuine interest/concern for us?

Although Simeon Brown appears to be taking on the fixer role for this government, doesn't mean he is any good as a fixer and the current government is still firmly in the cost-saving stage.

Many positions at Whaihaka/Ministry of Disabled People have been disestablished and many of their processes are being looked at very carefully to save further money. Many important managerial roles and IT roles at Te Whatu Ora/Health New Zealand have also been axed. Major projects that have taken years to develop and were working on the IT infrastructure making the referral process easier and quicker between primary care and hospitals has been canned. There is a hiring freeze in hospitals. But maybe he will turn things around...

 

That's a welcome surprise. Thanks @Hutan !

 

MoH has published a systematic review: Prolonged Symptoms Attributable to Infection with COVID-19
Link | PDF

One mention each of post-extortion exertional malaise and ME/CFS (referencing the NASEM definition).

Sure, those things would have been quite useful.

 

extortionate gremlins at work?

 

Hah!, I don't often get caught by auto-correct. I'll have to take that one on the chin.

 

Well, maybe your auto-correct has grasped something of the essence of the thing: PEM is an extortionate price to pay for indulging in some minimal activity

 

Otago Medical School is looking for lived-experience volunteers - patients and carers - to help train the next generation of doctors. If patients are too ill to go to the medical school the med students can do home visits in mini-groups. If interested in volunteering contact Friends of the Medical School (foms@otago.ac.nz)

https://www.odt.co.nz/news/dunedin/campus/medical-school-looking-volunteers-meet-students

 

Arroll and Oliver writing in NZ Doctor: Using Lightning Process to break cycle of fatigue in long COVID

Above the paywall reads —

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