News from Aotearoa/New Zealand and the Pacific Islands

Was curious about the article, but there's only a single sentence.

However this is interesting, the accompanying photo gives the name of the LP coach. And they claim to treat, well, basically anything:

Stroke, Head Injuries, Concussion, Parkinsons, Guillain-Barre Syndrome

Menopause, PND, Endometriosis, Fertility, Morning Sickness, Post-Natal Support, Coping with Chronically Ill Children

Rheumatoid Arthritis, Psoriasis, Multiple Sclerosis, Lupus, IBS, Graves, Addison’s disease​

So, this is the state of modern medicine. IMO it explains why the discipline has been shockingly stagnant compared to other scientific disciplines, and probably why healthcare costs have risen above all others in recent years, despite delivering less and less with time. And it's largely because of this. They went full whackospiritual, have essentially given up trying.

 

University of Otago
Biochemistry Seminar: Angus Mackay, PhD Graduate
Tuesday, 30 May 2023

Time 12:00pm - 1:00pm
Audience Undergraduate students,Postgraduate students,Staff
Event Type Seminar
Online and in-person

https://www.otago.ac.nz/news/events/otago0244904.html

 

Haven't watched

https://www.listeningtofamilies.co.nz/watch-videos/chronic-fatigue-syndrome

 

Have now listened to some bits and pieces (not to all of it, there are 18 short videos). Impression is of a mixed bag.

Target audience appears to be families trying to cope with having a youngster with ME.

The presenters are a mother of a young pwME, an adult pwME&LC, and Prof Tate in the double role of expert as well as father of a pwME.

There look to be two main aims.

One, to share personal experiences of dealing with ME in various situations and make viewers feel less alone in their own battles. This part is quite strong albeit unlikely to be particularly uplifting to viewers as a lot of the experiences reported were negative. And that's coming from people who look like white, middle-class folks capable of standing up for themselves and their family members (they may not be, just the impression you get from the videos), I don't know how that makes less privileged viewers feel. But overall I think the videos achieve this first goal.

Two, to provide viewers with some factual information and share some tips gained from lived experience. This part is more shaky. A few of the 'facts' are a bit on the speculative side and some of the tips are overly anecdotal but not properly flagged as such.

Unfortunately Prof Tate mixed up his roles. It's one thing for him to report as a father on the sometimes less than rational things the family have tried out of desperation and convinced themselves were helpful. That's fine and we've probably all been there. But as a researcher he needs to be much more clear about what is based on fact and data and what is speculation and anecdote. Many pwME don't have the necessary knowledge to make those distinctions for themselves.

I also fear that him talking up preliminary research findings as if they're solid facts already and his telling of anecdotes about reiki and brain retraining and what have you may make him look less credible in the eyes of the people who fund research, that they'll be even less inclined to closely look at the quality of any actual proposal. As far as I can tell, Prof Tate knows his biochemistry and has an extremely valuable contribution to make to ME research, I'd hate to see him self-sabotage his chances of getting funding. To be fair, when it comes to ME research in NZ, there isn't much left to (self-)sabotage, the door's basically shut anyway.

 

Support for Long Covid and ME/CFS Presentation by Client Support Coordinators - Natalie Newall and Maddie Finnigan-Degarnham
ME Support
https://waitakerehealthlink.org.nz/wp-content/uploads/2023/05/ME-Support-Presentation-May2023.pdf

 

Long Covid Support Aotearoa website. First iteration, so won't be perfect and I think there's an idea that it will be a living resource, developing as knowledge and resources come in. It has been generated by patients (those with sufficient energy), so the emphasis is on sharing lived experiences rather than necessarily getting the scientific concepts 100%. I made a few suggestions before it went live, and most were adopted I think. I'm not sure the pages on symptoms like anxiety and depression are spot on, but probably OK for v1.

There is also a plan to develop a register of patients in NZ via registering with this site. This won't represent strong epidemiological data, but might be regarded as an improvement over the Ministry's current data gathering efforts - which is zero as far as I have seen.

 

Available here
https://www.rnz.co.nz/national/prog...to-get-me-chronic-fatigue-syndrome-classified

Yes, there were a few of the usual niggles like 'chronic fatigue' and 'tired' sneaking in here and there but overall I thought it was good. To me Fiona's attempts at explaining the kafkaesque situation pwME find themselves in when trying to access services highlighted precisely that, that the situation is ridiculous. ME is a disability but pwME are not eligible for disability support unless they also have an intellectual disability or are on the autism spectrum. Instead they're supposed to get support through the long term chronic conditions system but to be eligible for that you have to have a needs assessment and you're only eligible for a needs assessment if you're over 65 or need 24/7 care. I think I got that right... Either way, it's so inane you couldn't make it up

 

NZ Herald — ‘Systemic failure’: Experts sound worries over support for Long Covid sufferers

Mostly good, but let down at the end.

Eg Dr Anna Brooks —

Dr Luke Bradford —

Ending poorly, with comments from the Mum of a very severely affected daughter then —

Many patients and families seem to think that LC clinics have been helpful, not realising they've been a failure overseas. I'd suggest NZ has been lucky to not have clinics set up, modelled on UK and Australia. Of course an enormous lost opportunity that the government didn't listen to our recommendations of what an effective LC/ME clinic could be. A few typos in the article, the best one being "psycho psychologists".

 

YouTube - Post-Exertional Malaise in ME/CFS - Management and Supports - Webinar for Health Professionals (24 mins)
Dr Cathy Stephenson for ME Awareness NZ on World ME Day.

I think this is a good resource for GPs and other health professionals; but also patients and family members. Includes a good discussion of PEM, its symptomatic features, triggers and management; as well as 4 minutes of a patient's experience (a former health professional going from full health to severe).

 

I have been contacted by a gastroenterology dietitian at Christchurch Hospital, NZ, who is also a researcher at the University of Otago Christchurch. They are wanting to discuss their ideas for research into the role of nutrition in the management of ME/CFS - with someone /people living with ME/CFS. They are planning to apply for one of the ANZMES research grants.

Is there anyone here who might be interested and have some knowledge /insight in this area? Someone mentioned there is a dietician from Norway in this forum who might be worth connecting the researcher to but I don't know who that is.

We want to steer them in the right direction. They have asked for someone to have a short phone conversation with (or perhaps email will work?) about their proposed research ideas and whether they may be of benefit to the ME/CFS community.

Apparently there is an existing project at Otago Uni Christchurch on potential blood markers and response to nutritional treatments, and they want to build on that.

 

When you refer to a dietician from Norway, do you mean @Midnattsol ?

 

Interesting Long Covid cover story in the Listener (not online AFAIK, may be available through libraries). Summary:

Some personal before/after virus stories.

A symptom list, unhelpfully with anxiety at the top but at least it contains PEM.

Complaints about the lack of knowledge and support apart from some self-help websites.

ME comparisons (Prof Tate).

A somewhat random run down of the research - notably missing out Anna Brooks' work - and mention of a rather dubious test for LC, to be fair the article does call it unreliable.

Also mentions a pilot from ABI Rehabilitation services (NZ) who normally do brain injury rehab, not enough info to judge what they're doing.

A LC registry is being set up. Seems to be limited to documenting impact of illness and lived experience rather than function as a platform to facilitate biomedical research at this stage (but a good initiative that could be built on, funding permitting - it's more than what we have for ME).

Interestingly, in light of ANZMES' parliamentary petition efforts, the article mentions a NZ study which recommended LC be recognised as a disability, though it doesn't say how far they got with actually achieving that one.

Also some pointed comments by Jenene Crossan about doctors suggesting the Lightning Process or positive self-talk. Will be interesting to see the letters to the editor next week