News from Aotearoa/New Zealand and the Pacific Islands

MECFS Canterbury and M.E. Awareness NZ approached both Emeritus Prof Warren Tate, University of Otago, and Dr Lynette Hodges, Massey University, about making a statement about the suitability of exercise treatment protocols for people with ME.

These statements have been published on https://m.e.awareness.nz/statements-from-academics

It is hoped that these statements will assist health professionals, insurers and others, to get up-to-date with current research findings about ME/CFS and appropriate management of the illness.

 

Thanks. I found the discussion of the exercise intensity of specific activities of work and daily activities towards the end of Dr Hodges’ statement interesting.

 

This showed up in a search because of reference 6. Unfortunately, I can't access it, so I have no idea how worthwhile it is to highlight.

https://www.nzdoctor.co.nz/node/19379

What to expect the first time you encounter a patient with ‘long COVID’
1 September 2021

 

Kia ora koutou, I've just had a conversation with a PwME from Christchurch, who has recently been referred to a psychiatrist as part of the requirements for receiving income protection insurance payments.

The psychiatrist diagnosed him with somatic symptom disorder . His insurance claim has thus been refused .

I think the only way to overturn this (other than through a positive disease diagnosis) would be by getting a second psychiatric opinion. S I was wondering if anyone here knew of an ME-friendly psychiatrist?

I think its unclear whether this person actually meets the DSM-5 criteria for SSD, because they require excessive anxiety and concern about the health issue. So there's a chance tof challenging the diagnosis.

To be honest, I'm not even sure ME-friendly psychiatrists exist. But here's hoping...

PS feel free to pm me if you prefer.

 

So sorry to hear this. I have concerns that I would have the same fate, so I haven't tried to invoke insurance so far (still hoping to slowly get myself out of this nightmare, with excellent support from my employer).

It seems a long shot that there even might be an ME-friendly psychiatrist. I might be prejudiced by all I've learned over the last few months, but evidence to date suggests that psychiatric training is likely to be dogmatic in the extreme.

Edit: typo

 

Thanks @Hutan, I looked back up-thread to your linked comment. It was really great to read that many psychiatrists here are actually on-board. I'm happy to be wrong with my earlier comment!

I might also comment that my own experience of seeing a psychologist was also very positive. I went early on when things were first bad for two principal reasons. I had an open mind as to cause and was prepared to do anything to aid recovery (won't we all?); and I recognised that there would very likely be a secondary detrimental psychological effect.

I guess the only question then is whether the insurance companies have certain psychiatrists only on their books or whether @Woolie's friend is free to choose any suitably qualified practitioner for a 2nd opinion.

 

I've messaged my friend and I'll come back once I've got a response.

 

I've PM'd you.

 

It would be interesting to know what insurance companies are involved.

 

I would encourage the person involved to use the Registered Nurse service available through MECFS Canterbury, to access local advocacy and support with health professionals and insurers.
A self-referral form would need to be completed. Link on this page. https://mecfscanterbury.nz/#/services/individualsupport

The Canterbury District Health Board has very clear clinical guidance for ME/CFS (based on IOM 2015) on their community and hospital Health Pathways platforms, so one would hope that carries some weight within the region.
There is also the recent letter from Prof Tate, that ME/CFS is not a functional disorder. Available to download on https://m.e.awareness.nz/statements-from-academics

 

Thanks so much, everyone, for your help and advice. I'll pass it on to the person involved.

 

ME Auckland have announced that Prof Warren Tate will be speaking at their online AGM...

 

https://www.stuff.co.nz/life-style/...-this-disappointment-that-i-have-with-my-body

I came across this article this morning.

 

1) North & South (Oct edition) has a short article from a historian's point of view. It draws a line from the "sleeping sickness" that followed the Spanish Flu to long Covid. Tapanui Flu (ME) gets a mention as do Prof Tate and Whitney Dafoe. Nothing groundbreaking but if the general reading audience feels shocked by the neglect and stigma sufferers past and present have been subjected to, that would be a good thing. Not online unfortunately, nor on my library's Press Reader app.

2) There's also a good letter to the editor in this week's Listener, in response to a recent article about research into long Covid which briefly mentioned ME (that article was mostly a rehash of another posted previously). Sorry, photo turned out slightly blurry. Would really like to know who wrote that, to find out more, but looks like the person wants to remain anonymous (or maybe needs to, because of the out-of-court settlement).

 

M.E. Awareness NZ obtained permission to share the 18 September article in the NZ Listener about Post-Viral Illness.
The Listener is a print only publication, and does not have online content.

https://m.e.awareness.nz/beyond-the-myth

 

NZ Geographic has a lengthy article on long Covid. Nothing new to members here but it's a good piece and ME gets discussed towards the end.

https://www.nzgeo.com/stories/the-known-unknowns/

ANZMES have put some $$$ towards Anna Brooks' research:
https://anzmes.org.nz/anzmes-sponsors-nz-long-covid-me-research/

But also still fundraising here:
https://www.auckland.ac.nz/en/giving/donate/a-z-list-of-funds/long-covid-research-project.html