News from Aotearoa/New Zealand and the Pacific Islands

That was a good interview (8min video).
--------------------
The link below has already been posted in the World ME Day thread but visitors just looking for NZ posts may not see it there.

The ANZMES LearnFromME event included recorded presentations by:

Prof Tate - some preliminary data on very small cohort of LC vs ME vs HC, plus a rough outline of his current working hypothesis which is based on a cell danger response vicious cycle, a paper is currently going through the review process

Dr Brooks - outlines her research plans

Dr Vallings - haven't watched yet

http://anzmes.org.nz/learnfrommenz/

 

An article following up on the interview with Anna Brooks.

https://www.stuff.co.nz/national/he...-of-cases-could-spell-messy-future-for-health

 

There's a piece about World ME Day in NZ in Scoop, in the World ME Day thread
https://www.s4me.info/threads/me-awareness-day-week-month-may-2022.25346/page-2#post-419229

 

Great comments by Anna, she is correct on the identification of the infectious pathogen and historic covid infection (as much as possible, not fail safe, accessible etc) especially for the record/health statistics. The patient might be able to get the Functional Diagnosis changed by Neurology and off the hospital EHR. GP’s need to clearly state in their EHR and to their patient that their working diagnosis is a post-infectious syndrome and give specific guidance on pacing, rest etc. It’s unclear what has occurred but hope her GP can work though this with her and get her any additional support.

An example on identification - my son had to isolate at home with his flatmates because both of them had tested positive for covid on RAT. He had all the classic omicron symptoms but his RATS were not showing positive for a few days so had a nasal swab and on PCR, he was negative for covid but tested positive for influenza.

That Scoop article was very well written!

 

Still no further details on the symposium programme page. But there is this article about the symposium on Newshub today, going a bit biblical:

https://www.newshub.co.nz/home/new-...-long-shadow-urges-officials-to-act-now.html?

 

I have a really bad feeling about this symposium. The lack of information on the speakers (apart from the obvious ones that come up on an internet search) makes it sound like a thrown together response to the LC problem in NZ.

 

Every time I see comments like this I see a setup for failure. A problem does not have to be come catastrophically unmanageable to be a problem. This is exactly like people saying healthcare services will be swamped from each wave, and they are, but since people aren't dying on the street in front of hospitals, it's treated as if nothing's happening.

It's the same problem as with climate change, with so many people basically saying if it isn't as bad as a large asteroid hitting the planet, if their home isn't destroyed, it's no big deal.

Problems. Do not. Have. To reach catastrophic proportions. Before they have to be taken seriously. Damn. It.

 

Has anyone watched this yet? Useful to share?

 

Have only listened to second part with Dr Vallings Q@A via CCIS - all pretty standard and useful but….she said that taking a holiday might make your ME better…and when it came to losing weight consider genetic inheritance but then said it is down to you - you either eat too much due to being psychologically disturbed and are comfort eating or do not exercise enough! or just need to accept you will be. Your choice to go to a weight disorder clinic but no suggestion given what this actually is ?medical ?private what..

Do people think the long covid service symposium next week will have all the presentations recorded and then available to public after? they only mention they will put up “resources”.

Dr Vallings (now officially retired from clinical practice) is mentoring a GP in Cambridge (Dr Judikje Scheffer) at JUSC Medical to be a ME clinician. She has come from being a sports doctor and general practitioner for High Performance Sport New Zealand (Rowing).

 

A holiday from what? From being disabled? From a dystopian nightmare that destroyed my life and all quality to it?

 

A second good article on Scoop
https://www.scoop.co.nz/stories/GE2205/S00043/will-you-learnfromme-this-may-12.htm

A follow up on Newshub, with a short video, warning of 200,000 Long Covid cases in NZ (without any mention of existing ME cases) and calling for action:
https://www.newshub.co.nz/home/new-...by-long-covid-19-from-first-omicron-wave.html

In the meantime what the Ministry of Health is aiming for is that...

https://www.health.govt.nz/covid-19...e-public/about-covid-19/long-covid#understand

If "other long-term conditions" means "conditions like ME" this doesn't bode well.

 

ME Auckland, ME/CFS Support Kate Duder who has ME interviews a pwME (severe) and a newly diagnosed pwLC, 45 mins explaining difficulties getting diagnosed and managing illness

https://www.youtube.com/watch?v=Wm7C1weGvs4

 

Haven't listened/watched myself but noises from those who have indicate a mixed bag, some excellent presentations, some ho-hum and some plain bad. So far largely ignored by the media apart from this article:

https://www.stuff.co.nz/national/he...ility-challenges--commissioner?cid=app-iPhone

Tesoriero has been making sympathetic noises for a while and appears to genuinely care but doesn't seem to have the clout to push through any significant changes.

 

Excellent (albeit unfortunately time-poor) initial talks, setting the scene for a purely biological cause against a well-established history of (ignored) postviral disease. Strong references to ME/CFS while recognising that LC had overlap with core similarities but a different symptom spectrum, with some unique features that likely relate to this particular virus. Opened with a keynote of one patient's lived experience which included many of the usual failures we are accustomed to, along with attempts by the patient community to help themselves having been "left to swing" by healthcare systems (in NZ and globally).

Emphasis on inadequate biomedical / poor psychosocial research being a failure of the past that needs to be corrected. Psychiatry/psychology presenters that followed seemed to disavow any BPS and adopt a supportive role. A number of good talks about health inequity including a truly excellent and fiery one that reviewed the situation for Māori living in more remote areas.

Was good to hear the Disability Commissioner indicate that LC (and by extension ME) were to be regarded as disabilities by definition. If there is actual follow-through on the ground, or specifically in legislation, this would be a big advance. Many patients in NZ struggle to receive appropriate social support on top of no useful medical care, which is both ridiculous and shameful.

I think the stand-out bad one was focused solely on concerns for the GPs, who were about to be overwhelmed. I think he was actually calling for patients to please not seek help. I could only think that medicine has made its own failure here and could probably have quoted from any number of S4ME threads in that regard. I'm sorry, but GPs and health systems as a whole, globally, are just going to have to suck it up. Consider it deferred maintenance costs: the bill is now due with a substantial interest penalty.

Due to timezone, Trish Greenhalgh offered a pre-recorded piece on what NZ could learn from the UK experiences. Six-point (A-F) framework: from listening to the patient to prioritising research.

I would have preferred a bit more time for discussion on the biomedical knowledge already gained and where we needed to go, but words were offered to suggest that research funding should follow. NZ is restructuring its health system, so there are potential opportunities if people are truly listening. Quite a bit of time was spent on recognising and discussing health inequities and systemic racism, which were noted to be very relevant in LC and that would propagate down a generation to make things even worse.

Overall, a well received seminar I think. BPS would appear to have no foot in the door with LC in NZ; and could well be regarded to have had the boot for ME too. Timely given the APPG report and related commentary recently from the UK. I think we will still have work to do to educate those of our GPs and specialists who seem very stuck in the BPS mindset, but those in charge of the health system itself seemed to be on-track.

 

I could only dip in and out of it due to the time difference here in the UK.

Must have missed most of the good parts (except for Anna Brooks). There was a series of talks which were empty words and essentially a meaningless waste of time.

What stood out for me was the lack of 'meat'. Although ME was mentioned through it the lack of true relevance and responsibility was telling. ME was something to learn from but the main lessons I felt didn't come across.

There was representation for Maori but no representation of LC as a women's health issue and no acknowledgment of the inequality of health, social and financial for womem. I think this was a significant and telling oversight. As far as I could see the minority group parts were not represented by people with LC.

Heard a truly awful talk by Tania Clifton-smith who is a hyperventilation physio. The decision to include her spoke volumes.

https://www.bradcliff.com/about-us/the-bradcliff-team/tania-clifton-smith

There was a woman on the psych panel who has worked in UK LC clinic and refers to her patients in a minimising way and did a plug for the exercise clinic.

There was no facility for people with LC to comment on the proceedings. Patient representation was poor. There should have been a panel at least of patients and the chat facility should have been available on Zoom. Patients were used to window dress the proceedings and the message was soft. It felt like the way patients have been used for decades by different charities, bad researchers etc where we can talk about the neglect, our suffering but it only serves as a way of getting groups more funding. They never let the right patients speak. Only the ones who's message is useful.

I was left with the feeling of being spoken down to by self and govt appointed representatives. ME apart from an exception is only being paid lip service.

 

I missed all the talks until late in the Symposium and joined as Tina Ngata zoomed in from Tarawhiti/East Coast. I have worked there so good korero about issues. Then the new CEO of Health NZ and one of the Māori doctors who is setting up the Maori Health Authority. Definite push to go to digital platforms eg. Secure online GP/Specialist and other consults for healthcare assessment and treatment recommendations with local application in community based hubs/Hauora, this will take years, lots of money and we don’t have the workforce now and will take decades to upskill them all and the navigators etc so nothing new here….

I am afraid I don’t show your optimism that BPS has no foot in the door of LC. As you will know the whole NZ medical system is riddled with it.

GP’s (and health coaches becoming embedded into practices), are the gatekeepers and there are plenty around who don’t listen and think all anxiety and distress should be managed via mental health-type packages of care i.e. stress management and “try a bit of exercise it is good for your health”…..When GP’s do request specialist consults, these specialists often push back on referrals because the patient has a CFS diagnosis and they are too busy. Neurology is the worst…but on a positive note, I think they are unlikely to see a psychiatrist for some years unless they have moderate to severe MH disorders. (My area has lost about 50% of the workforce during the pandemic, before that we only had about 60% of the number required….then there is the lack of psychologists and counsellors….)

BPS is still being actively studied/promoted in Health Psychology Departments and there are still problems within the Department of Psychological Medicine and Liaison Psychiatry. Because of overstretched health systems, patient voices quickly get lost and whanau consultation and support very patchy.

I suspect very soon LC people will get the same treatment as ME now, around the motu. They will be unable to access the specialist assessment and treatment and there are few disability services available to them. ME have a very limited range now and although the Disability Commissioner has publicly acknowledged ME and the whole disability structure especially the ACC disparities, it will take years of political debate, law change and money.