News from Aotearoa/New Zealand and the Pacific Islands

Otago Daily Times: Marathon run to raise money for research

(TW: article hints at suicide)
ODT said:
A Dunedin woman is running the Emerson’s Dunedin Marathon this weekend to fundraise for research of a serious long-term illness that is on the rise.

Dr Megan Elder hoped her fundraising efforts would support her old PhD supervisor and University of Otago emeritus Prof Warren Tate’s research into chronic fatigue syndrome.

"I want to support him by raising some money because he works mainly off donations at the moment."

The syndrome was about to become a huge issue because it had been linked to long-Covid and Prof Tate was one of the few researchers in the world working on it.

Dr Elder also had experience dealing with the syndrome as her father and an old flatmate had both lived with it.
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Her Givealittle page has raised NZ$2155 at the time of writing. Here's hoping Dr Elder gets a taste for marathons and does a @Mike Harley and just keeps on running

https://www.odt.co.nz/news/dunedin/marathon-run-raise-money-research
https://givealittle.co.nz/fundraiser/running-for-me
 
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/
 
HRC grant: Evidence-based management of Long COVID
NZD 1.4m over 36 months.

This was awarded in Dec 2022, but announcement was deferred to Feb 2023. I don't think it has been noted on S4ME.

Lay summary
Long COVID (LC) is increasingly recognised as a public health concern, with the magnitude of the problem in Aotearoa New Zealand likely to grow considerably due to the current SARS-CoV-2 Omicron outbreak. We propose a multi-disciplinary study that integrates the disciplines of immunology, kaupapa Māori evaluation, co-design methodology, epidemiology and health services research with the clinical interface. By the end of the project, we will have developed i) a set of bio-markers of immune dysfunction, to contribute to the accurate diagnosis of LC; ii) a template for evidence-based, primary care services, co-designed with people with LC and iii) recommendations for the improvement of existing and development of future LC clinics to further meet the needs of patients. The work will be supported by our extensive network of LC Stakeholders, including people with lived experience of LC, Māori health experts, health professionals, health service researchers and co-design experts.
 
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 is an Associate Professor (Research) in epidemiology at Te Hikuwai Rangahau Hauora | the Health Services Research Centre. She trained at the London School of Hygiene and Tropical Medicine (MSc) and Bristol University (PhD). She then worked at the Centre for Public Health Research at Massey University (Wellington) as Senior Lecturer in Public Health. After another period at Bristol University as Senior Lecturer in Epidemiology, she returned to Wellington, and is employed at the HSRC, working on projects around access to primary health care. Current Projects: Establishing the Long COVID Collective; Evidence-based management of Long COVID; Enhancing Primary Health Care Services to Improve Health in Aotearoa New Zealand; Consequences of Barriers to Dental Care; The challenge of closed books in primary care access, health outcomes and equity in Aotearoa New Zealand
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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.

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:
It seemed like Pacific people were less likely to report ongoing [Long covid] symptoms in the survey data. When we look at the qualitative data, that's those in depth interviews, Pacific people were finding alternative reasons for their ongoing symptoms. Some of them talked about 'this is me just getting older', 'well, I've got underlying symptoms so it's probably just that getting worse'. I personally, and the Pacific research team agree, that there is no reason to think that the likelihood of getting Long Covid is going to differ by ethnicity. So it's probably about recognition and attribution of the symptoms both by individuals and their health providers rather than an innate difference for Pacific people.
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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.
 
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:banghead::mad::wtf::bawling:

In case the emojis aren't clear, the below is not a recommendation, however convincingly written it may seem to the uninformed

The Spinoff: Getting the brain back on track: Is there new hope for sufferers of chronic illness?

If this piece isn't part of that coordinated international push linked to the Oslo Consortium it's at the very least highly opportunistic (my bet is on coordinated)

Don't want to give it any clicks so hopefully this archived link works

https://archive.ph/Y42fx

Apparently it's on X/twitter, too, if anyone feels the urge to comment (politely and well-reasoned of course)
 
Thanks @Ravn, the archive link worked for me. But, ugh.

What causes chronic illness?
There is a storm in the hill country. Land is saturated and unstable. Landslides have blocked waterways, others are flooding. Usually when our system gets disrupted, the healing process works to restore a state of equilibrium. But there are some fundamental processes in the body that, in times of illness, can stall our return to health. Let’s head to the hills to investigate.

At the highest peak, overlooking surrounding lands, we find the brain. At the same time as reliably controlling much of our existence, the brain is also continually changing. Neuroplasticity is the ability of brain cells to adapt in response to internal and external stimuli. It happens throughout our lives and is a subconscious and neutral process – there is no strategic decision-making about whether changes are good or bad for us. It is based purely on how often messages are sent between different parts of the nervous system. When messages are frequently repeated, neural pathways become well-formed, making actions easier and faster to perform. So, when healing from an injury or infection, if we’ve been tired, sore, breathless, feverish, dizzy, nauseous, sad and worried, neuroplasticity can make these symptoms become the default settings.

Across the main range of the hinterland, spanning the spine and reaching into every inch of the territory, we find the nervous system. Part of the nervous system is dedicated to helping us survive physical danger. Somewhat understandably, our subconscious brain can start perceiving illness, or injury, or their ongoing consequences, as dangerous.
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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.

Hope lies in the hill country. After the storm, there was flooding in the lowlands, so we got busy plugging every burst dam, mending breached stop-banks, and repairing broken bridges. We’ve been caught up in the downstream effects of chronic illness, distracted by the numerous symptoms we suffer. In addition, we need to be up in the headwaters stabilising landslides, clearing waterways, and allowing new channels to form to prevent damage on the plains.
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Here's a roll call of woo:
Practice is the key to training the brain and body back to good health. You don’t need any special skills, you just need to be keen for change, open-minded, and dedicated with practice. Mind-body training programmes can show the way. To name just a few approaches, there’s Dr Rick Hanson’s Positive Neuroplasticity Training, Alan Gordon’s Pain Reprocessing Therapy, Annie Hopper’s Dynamic Neural Retraining System, Ashok Gupta’s Gupta Program and Dr Phil Parker’s Lightning Process. There’s even a world summit on rewiring your brain.
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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.
 
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Dr Ursula Cochran is a freelance science writer from Wellington. She is an earthquake geologist with 18 years as a research scientist at GNS Science. Her interests include neuroscience, parenting, and planet Earth, and aspirations for all New Zealanders to be safer and happier.
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Writing in 2021: The body has its own traffic light system, and it’s been stuck on red for too long, this time with a different metaphor —

You wake inside a burning house. This is not a dream or a movie. Your house is on fire.
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Using the mind to keep you in the green zone is as simple as purposely making good use of your thoughts. Talk to yourself like a supportive coach, a funny friend, or a trusted kaumātua. Think things that make you feel good. Just picturing yourself at your favourite holiday spot with all the sights and sounds and smells of the place can calm your nervous system and put you back into rest and digest mode. And neuroplasticity tells us that if we practise this enough, we actually change the brain to make it easier to remain in the green zone.
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The soul may be a shining, slippery, amorphous presence but it can still be guided. It doesn’t need taming, it needs encouraging, and it needs a purpose.
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I wonder what her response would be to the many articles detailing how earthquakes are caused by "immoral behaviours" (not linking any).
 
Sean said:
Is there something in the water in NZ that makes people particularly susceptible to this nonsense?
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Don't know about anything in the water, but them waters sure flow murky

The LP instructor Oliver mentioned in the Spinoff article co-presents at GP conferences with Arroll who's responsible for that awful Goodfellow CME. Arroll is involved in other medical education as well and makes liberal use of papers authored by members & friends of the Oslo Consortium. And so round and round in circles the circus goes (and was that a whiff of tobacco just then? or oil? either way, something stinks here)
 
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?
 
So, when healing from an injury or infection, if we’ve been tired, sore, breathless, feverish, dizzy, nauseous, sad and worried, neuroplasticity can make these symptoms become the default settings.
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And like others, your model still doesn't explain my disease onset, which although not proven, would seem to have followed an asymptomatic Covid infection. I never was "tired, sore, breathless, feverish, dizzy, nauseous, sad and worried".
 
The Spinoff has, sort of, responded to concerns and the article has been edited:

"This piece was amended on October 1, 2023 to make clear that this is an account of one person’s recovery, not medical advice, and to respond to readers’ concerns about the Lightning Process in relation to ME/CFS."

I haven't checked to see what changes have been made.

Archived revised version: https://archive.ph/7bgd3
 
Apart from the riders at top and bottom, the main change I saw was —

V1

The key advantage of mind-body training is that you can become healthy quickly. Such change is hard to believe when you’ve been very sick for a very long time. But when we learn how to switch default neural pathways in the brain to new healthy pathways and encourage the nervous system back into rest and digest mode, we can start to understand how progress can happen rapidly. Like an ethical hacker, we are correcting some faulty software. Or like a train controller, we are switching points to direct trains onto a different network of tracks.
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As an intervention for long Covid, the Lightning Process is promising for several reasons. Firstly, it is based on a model of chronic illness very similar to that now being proposed for long Covid. Secondly, techniques can be done from a bedridden or housebound state. You can start very small with short bursts being taught online or next to a sickbed.
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V2

I believe that the key advantage of mind-body training is that you can become healthy quickly. Such change is hard to believe when you’ve been very sick for a very long time. But when we learn how to switch default neural pathways in the brain to new healthy pathways and encourage the nervous system back into rest and digest mode, we can start to understand how progress can happen rapidly. Like an ethical hacker, we are correcting some faulty software. Or like a train controller, we are switching points to direct trains onto a different network of tracks.
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It must be noted that the Associated New Zealand ME Society (ANZMES) does not endorse the Lightning Process as a treatment for ME/CFS. But as an intervention for long Covid, I believe the Lightning Process is promising for several reasons. Firstly, it is based on a model of chronic illness very similar to that now being proposed for long Covid. Secondly, techniques can be done from a bedridden or housebound state. You can start very small with short bursts being taught online or next to a sickbed.
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