News from Aotearoa/New Zealand and the Pacific Islands

Obviously the Minister doesn't know much about LC. But I do sort of sympathise with her not wanting to make a commitment on a radio programme, and especially not wanting to be seen to endorse a particular researcher. There is a process for evaluating research for govt funding, and it shouldn't involve an uninformed Minister making a decision on the radio. Still lame in many respects of course.
 
Wyva said:
I can't access this article in New Zealand Doctor, but it cannot be anything good:

Lightning Process: ‘Rewiring the brain’

It seems to be about the Goodfellow Symposium that @SNT Gatchaman posted about earlier in this thread: News from Aotearoa/New Zealand and the Pacific Islands
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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
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is a debilitating (often life-long) disease that affects millions of people worldwide. It also appears to affect a significant proportion (millions) of Long-COVID patients globally. However, it is poorly understood, often misconstrued, while desperately lacking in much needed scientific research funding.

This literature-based research develops a “de novo” paradigm for ME/CFS, applicable to Long-COVID related Post-COVID-19 Fatigue Syndrome (PCFS), from a neurological perspective. It culminates with a neuroinflammatory model, centred around the hypothalamic paraventricular nucleus, providing a rationale for the multiple triggers, relapses and symptoms of the disease.

It is hoped this model (published in three papers) will result in greater scientific endeavour, utilising increasingly sophisticated neuroimaging techniques, to further understand the central role of neuroinflammation in this disease.
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https://www.otago.ac.nz/news/events/otago0244904.html
 
Ravn said:
Haven't watched

https://www.listeningtofamilies.co.nz/watch-videos/chronic-fatigue-syndrome
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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.
 
That's a terrific comment @Ravn. From the videos I've watched, I agree completely. I wish we could help advocates understand the need to think carefully about the evidence supporting what they say, and clearly signal when they are suggesting something speculative.
 
Dolphin said:
Support for Long Covid and ME/CFS Presentation by Client Support Coordinators - Natalie Newall and Maddie Finnigan-Degarnham ME Support
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It seems that ME Auckland are now called ME Support, and they aim to "provide medical information, emotional support and advocacy" and support groups to people with "ME/CFS, Long Covid and related conditions such as Fibromyalgia" in Auckland, and across New Zealand.

If anyone knows people in ME Support, can you please let them know that they have used an old (1994) ME/CFS criteria that does not require post-exertional malaise (it's only optional). Much better to use the IOM (SEID) criteria I think, which is easy to understand and highlights PEM. And the information related to diagnosis for Long Covid is confusing, I think.

But, quite a lot of the material hits the right notes. They say they have 950 members, which I expect dwarfs ANZMES membership numbers, so they must be doing plenty right, and meeting needs.
 
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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.
 
There was an item on National Radio Nine to Noon this morning - Kathryn Ryan, the presenter, again being sympathetic, again about the need to have ME/CFS designated as a disability.

Fiona Charleton from ANZMES spoke. Her description of the current situation came across rather confused, although the fact that the situation actually is confused certainly doesn't help. There were a few glitches such as the suggestion that 25% of people with ME/CFS are bed bound too, although of course it's easy to trip up a bit in an interview. Tom (who appears in that set of 18 videos) also spoke, getting across what it is like to have ME/CFS well.

And then Warren Tate spoke. He is still giving the impression that the immune and mitochondrial differences are pretty much sorted. The presenter then asks, 'well, you were saying this a year ago, why, when it's all so clear, isn't the situation of people with ME/CFS improved?' The reply was that more training of health professionals is needed. Prematurely claiming things are known with certainty, as Warren did again, can backfire for us.
 
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Hutan said:
There was an item on National Radio Nine to Noon this morning - Kathryn Ryan, the presenter, again being sympathetic, again about the need to have ME/CFS designated as a disability.
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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
 
Gosh, that radio item has resulted in a mention of the issue in the hourly news broadcasts since then - maybe 4 mentions so far. That's a pretty impressive impact.

I've listened to the item again, and I still wasn't clear what Fiona was saying about how ME/CFS is treated with respect to funded support.

This is what I understand:

There's the Ministry of Disabled People (Whaikaha):
https://www.whaikaha.govt.nz/assessments-and-funding/how-to-access-support/

Ministry funded disability support services are available to people who have a physical, intellectual or sensory disability (or a combination of these) which:
  • is likely to continue for at least six months
  • needs ongoing support to live independently, to the extent that ongoing support is required.
These services are mainly for people under the age of 65 years.

The Ministry will also fund disability support services for people with:
  • some neurological conditions that result in permanent disabilities
  • some developmental disabilities in children and young people, such as Autism
  • physical, intellectual or sensory disability that co-exists with a health condition and/or injury.
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I think MS is one of those neurological conditions covered by Whaikaha). I'm not entirely sure though. I can't find a list of the conditions covered online. It seems there are contracts between Whaikaha and regional service providers that specify the covered conditions, so it may be necessary to get copies of those.


And then there's the Ministry of Health, who pick up most of the rest (offering a generally lower quality of care - and that's the bucket ME is supposedly in), other than the people whose disability is the result of an injury (they get high quality support from ACC).

The Ministry [of Disabled People] does not generally fund disability support services for people with:
  • personal health conditions such as diabetes or asthma
  • mental health and addiction conditions such as schizophrenia, severe depression or long-term addiction to alcohol and drugs
  • conditions more commonly associated with ageing such as Alzheimer’s disease.
However, that doesn't mean there aren't other sources of support.

Disability support services for people with mental health needs or age-related needs are generally funded by the Ministry of Health external URL.

Disability support services for people with impairments such as paraplegia and brain injury caused by accident or injury are generally funded by ACC. Find out more about what they fund at ACC - What we cover external URL.
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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 :thumbup: —

University of Auckland immunologist and Long Covid researcher Dr Anna Brooks said patients were also facing inequitable access to care.

“While some report receiving appropriate care others are left with inadequate or even outdated and potentially harmful advice,” she said.
“Furthermore, the inability of some individuals to afford ongoing attempts at seeking care, combined with others giving up on their pursuit, is not indicative of a lack of demand for care.
“Instead, it highlights a systemic failure that is letting us down.”
Brooks was also concerned about a perception that Long Covid was linked more to Delta than Omicron, when studies had indicated the condition could occur irrespective of the initial variant of infection or vaccination status.
“Indeed, surviving one infection unscathed does not mean you will be out of the woods with getting Long Covid,” she said.
“It might be a second or third exposure that triggers this illness. It is likely that Omicron and its subvariants will cause the greatest burden of Long Covid cases in our country.”
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Dr Luke Bradford :thumbup: —

Royal NZ College of General Practitioners medical director Dr Luke Bradford acknowledged that GPs continued to face challenges with patients presenting with Long Covid symptoms.
“But the frustration there is not that it’s a problem to diagnose ... it’s actually that the treatment options aren’t great, and the research is still conflictory on where to go on there.”
The Tauranga GP expected that would improve as more studies came in.
As it stood, the current approach to treatment came down to helping patients to recognise their symptoms, and to manage them in a way that was best for them, he said.
“But that’s frustrating when you’re living it every day.”
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Ending poorly, with comments from the Mum of a very severely affected daughter :thumbup: then :banghead: —

“So she started improving a little, which is fantastic, her sensitivity to light and sound has diminished and she’s able to talk a little bit more and she’s able to move a little bit more,” Allen said.
“She still gets exhausted and quite often it’s like she’s great one week and then the next week not so good, but the trajectory is improving, it’s still going to a long road.”
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Now Rose is on a “rehabilitation path”, it is obvious to Allen that more than ever New Zealand still does not have the facilities or trained professionals to help those suffering like her daughter.
“There’s no, there’s no support, you know, really for financial support except for the unemployment benefit, which seems weird to me,” Allen said.

“The mental health team have been helping Rose and they’ve suggested that she have Cognitive behavioural therapy for a psychologist, I’m trying to arrange it and it’s really difficult.
“We’re still paying, we’re still, she has a physical therapist three times a week”
Allen wants similar support to those in Australia or the UK, who have specialised long covid clinics.
“You get physical therapists, psycho psychologists, psychiatrists, doctors, a whole group of occupational therapists in a team that work in a team environment who build up their experience so that they can help their long covid patients,” Allen said
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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".
 
Whaikaha is looking for people to be on a steering committee working on improving residential care for disabled people. They are looking for (New Zealand) people who have themselves experienced residential care or has a family member who has. These are paid positions. Please let anyone in your network who might be suitable know.
@Cohen
Whaikaha - Ministry of Disabled People (Whaikaha) is committed to working in partnership with disabled people, Māori and Government to transform the disability support system in line with the Enabling Good Lives (EGL) approach.

The My Home, My Choice work programme focuses on the work needed to change the way people in residential services are supported so they have more choice and control in their lives. This includes developing options and alternatives for people who are considering entry into or exit out of residential care.
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More information here:
https://www.whaikaha.govt.nz/about-...action-plans/my-home-my-choice/steering-group
 
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.
 
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
 
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