News from Aotearoa/New Zealand and the Pacific Islands

Quackery against ME/CFS in New Zealand
Blog by Nina E. Steinkopf

Quote:
The following is offered as information to anyone who is considering recommending or attending Mel Abbotts “Empower Therapies» as treatment for ME/CFS.

Mel Abbott is a certified Neuro Linguistic Programming (NLP) and Lightning Process (LP) practitioner. Both NLP and LP are pseudoscientific and considered quackery. Claims of recovery from illnesses due to LP (or versions of it) are undocumented. Before you decide to recommend or attend a course, you should be aware that:

1. LP-courses are not held by certified health care professionals.
2. ...

Continues at link.

 

The people at ANZMES mean well but the organisation has problems. That last video demonstrates some of them.

It's old news, but what was Auckland ME is now ME Support and they clearly have big ambitions, including extending their influence beyond Auckland. They come across as professional.

What I didn't know is that membership is free. https://www.mesupport.org.nz/

 

Utterly horrendous RNZCGP case study on 'CFS/ME':
RNZCGP GoodFellow Unit MedCases CPD Sept 2023: Chronic fatigue syndrome/myalgic encephalomyelitis

 

The project has ambitious aims: biomarkers of immune dysfunction and recommendations for primary care services, developed by listening to what people with Long covid say. But, it looks to have a good team. Here's a few notes on the researchers involved in this study, as I think it's useful for those of us in NZ to be aware of them:

Associate Professor Mona Jeffreys

Mona has done some good work in the media, making the link between Long Covid and ME/CFS e.g.
https://pacificmedianetwork.com/art...ore-than-just-a-debilitating-health-condition

Here, in a video from ME Support with Mona talking about Long Covid. Mona says that she has had ME/CFS since 2014.

https://www.youtube.com/watch?v=qzwXODMungM

Just noting this from the video - important in the epidemiology of post-infectious syndromes in groups of people who are more likely to have more co-morbidities such as diabetes and heart disease:

This set of reactions from the Science Media Centre (NZ!)
https://www.sciencemediacentre.co.n...rt-for-those-with-long-covid-expert-reaction/
features Mona, and Lynne Russell who is also part of this project.

Dr Lynne Russell
Dr Lynne Russell works as a Senior Research Fellow - Māori Health with the Health Services Research Centre (HSRC) at Victoria University of Wellington.

Ms Jenene Crossan - has Long Covid and is a Long covid advocate

Dr Lis Ellison-Loschmann - works on Māori health equity issues
Dr Kirsten Smiler

Dr Anna Brooks - immunologist, has been working on post-infection diseases for a while. Part of Post-Viral Research Aotearoa which signed our Cochrane Open Letter, and has done useful work in the media explaining Long Covid.

Dr David Davies-Payne - paediatric radiologist with Long Covid, definitely up with the research . Part of Post-Viral Research Aotearoa - scroll right to see the whole team.

Dr Rosie Dobson - psychologist, University of Auckland
Associate Professor Tupa'ilevaililigi Ridvan Firestone - works on health equity issues for Pacific people
Dr Fiona McKenzie - along with others listed here, part of the Long Covid collective
Dr Claire O'Loughlin
Dr Sarah Rhodes
Miss Bailey Yee
Fiona Dunford

I've run out of energy to finish the list, maybe I'll get back to it. But, it's really good to know that so many smart and dedicated people are working on the issue of Long Covid in NZ, and what services for people with Long Covid should look like. And there are people in the team who understand the link between ME/CFS and Long Covid, so it can only be good for people with ME/CFS too.

 

Thanks @Ravn, the archive link worked for me. But, ugh.

For goodness sake. The illness that seemed to start my ME/CFS and that of my two children didn't have us lying in bed for weeks. For my son and I, who still have ME/CFS 10 years later, it didn't even have us significantly changing our routines. We assumed that we would recover, just as we had with previous similar illnesses before.

Here's a roll call of woo:

And from there it turns into paragraphs of advertising for the Lightning Process. You've heard it all before. Profiteering from the tragedy of Long Covid.

 

Is there something in the water in NZ that makes people particularly susceptible to this nonsense?

Not that your cousins on the Big West Island can hold our heads high.

 

Those metaphors about flood and fire are utterly ridiculous and insulting. Like you, Hutan, I continued with my normal life as best I could when I got ME, to my long term detriment. On the other hand when I got what was probably glandular fever some years earlier, I was bedbound for six months and fully recovered without any brain training or other such nonsense.

Whatever has happened to the need for scientific evidence? This madness is bizarre. Aren't humans strange?