News from Aotearoa/New Zealand and the Pacific Islands

The video hasn't been made available yet, but will post the link here when publicly available.

Yes, I am just about to read this paper and share your view going in. I don't think this is a good explanation and I also do not believe stress is perpetuating things for me. (Subjectively I would say stress is not a feature of my life currently, even within the imposed limitations. My friends and family agree.)

I thought it was quite good - perhaps I missed red flags. I have assumed the dysfunctional breathing (which I have) is a feature of autonomic dysfunction. Her emphasis on observing how patients breathe as a frequently overlooked marker of pathology did not seem misplaced to me.

Yes, I think the symposium could have been structured much better - perhaps over two days and with less time constraint on some of the key talks. It certainly wasn't perfect and there were some technical issues which ate into precious time too. A patient panel would have been ideal. Patient uptake of the offer to be involved was very limited due to the inherent trauma and stigma that is being experienced by so many.

Yes, I absolutely agree there is a great deal of work to do to remove entrenched BPS attitudes throughout the system. Also, yes the ongoing poor teaching and coaching are major problems. I thought the liaison psychiatrist spoke well, but will be interested in your more informed view. The foot in the door is in reference to defining this "new disease" as psychogenic. I just don't see it flying, despite all the ongoing attempts by BPS - including the "successes" they've had gaslighting many individual patients so far.

I say that as I think in the big picture there has been benefit with LC being looked at as new and not (+/- variant) ME/CFS, as so many abnormalities are now being reported. These findings may often be mis-attributed and most are not clinically reportable/available, but they're there, showing that something is going on in the broad camp of "postviral immune dysregulation".

Another key difference is the very large numbers of affected patients in a constrained timeframe (moreso outside NZ), rather than the trickle of eg lagging EBV cases, that are so much easier to individually discount as psychogenic. Insurance companies and major financial think-tanks are also taking this very seriously (see recent BoE comments on workforce) with their commentaries around inflation and recession risk. This is analogous to the disconnect between govt climate change policy and media presentation vs what insurance companies actually believe and adopt as policy.

But I note that symposium commentaries from others are at significant variance to my take. That may reflect my "junior patient" status and (even still) default optimistic set-point. There have been a number of times where those with more experience here have had a more accurate view on developments than mine. However, I would say that the symposium was very well received by NZ LC patients themselves. Admittedly they are as new to this as I am.

I maintain that we are being given an opportunity to take control of the narrative via a more empowered patient voice, reinforced by appropriate biomedical research. It only requires one or two voices of ultimate authority in support and the deal is sealed. I would further argue that we just run with it: don't give them a foot in the door with LC. Kick them in the shins and ridicule their stupidity (even if that has been ineffective over the years for ME).

When change does come it often has a trajectory of push-nothing-push-nothing repeat-nearly-forever and then sudden-change-for-the-good. This is often followed by a retrospective "you mean it was that easy? Why did we have to wait and suffer?"

 

That's funny because my ME started proper after I came down with an infection caught on holiday. I'm not going on another one.

 

I become suddenly (from my perspective) sick with POTS symptomatology while enjoying a glorious summer cruising sailing holiday. This followed a presumed asymptomatic Covid infection a couple of months prior. I use this as a counterexample whenever deconditioning / abnormal illness behaviour is promoted.

 

I had just returned from a fun filled extended three year holiday/hardworking OE in the UK including very extensive travel (basically the whole quarter of that side of the world) The theory back in the 90’s, by my physician and was the current scientific investigation at the time (of my junior patient status ) was that the immune system had been exposed to multiple new pathogens and infective contacts and it was not “coping” when I got my first “triggering” ME bacterial infection. They were very interested in testing for every known infective pathogen you could get in the public service (about 10 viruses at the time and lots of other infectious agents).

So with your travel/work history which has a few parallels, it does make for interesting musings on whether going on holiday with lots of fresh air, Vit D, exercise, away from work etc is good for pwME or for pwME/LC…

 

What are we supposed to do on an ME-improving holiday anyway? Rest? We are all doing that at home and being told off for it. Or does it have to be activity holidays, basically GET at our own expense? Or is it the thinking of happy thoughts whilst on holiday that will improve things?

 

Decent article reporting on the recent LC symposium and has good discussion overall of ME and how this is nothing new. The one thing I noticed above all is the continuous use of "it's not completely overwhelming the system yet, therefore no urgency to act" that pervades everything I see in reporting about medical issues. If it's not a crisis, wait for it to become a crisis, otherwise just dismiss and neglect everyone.

That's not a functioning system, it explicitly describes a system that is unable to handle normal issues. In this case the failure is essentially the solution, since without the failure maximizing the harm and building the worst-case scenario, the issue would be ignored entirely. Literally our only way out of this nightmare is by medicine failing as much as possible. Which is, sadly, happening right now. Still, no urgency since it hasn't become a full-blown crisis yet. Ugh.

Long read: The rolling maul of Long Covid
https://www.newsroom.co.nz/long-read-the-rolling-maul-of-long-covid

 

Good article by senior political reporter of Newsroom who seems more concerned about the Long Covid problem (and ME) than Primary Care, who think all can be managed within existing structures…

Dr Brooks (cellular immunologist) speaking up again for ME/CFS and many good comments by psychologist, Mona Jeffrey’s from Victoria University, Wellington (who has ME). Going to take a long time to get rid of the mythology.

I wonder what the long covid collective is officially called?

ETA: found it…the Long Covid Aotearoa Support Group.

The opening speech for the Long Covid Symposium by a pwLC, in writing, is here.
https://jenenecrossan.medium.com/otago-university-long-covid-symposium-keynote-speech-6ec870556f5f

 

A 'landing page' for them in provided by Auckland Uni. Click on info for patients.
https://www.nihi.auckland.ac.nz/long-covid
https://www.nihi.auckland.ac.nz/node/1221

 

More about the conference.

https://www.sciencemediacentre.co.nz/2022/05/27/a-big-week-for-long-covid-research-in-the-news/

Links to more articles - some already posted here, some not - at the bottom of the article.

 

Link to recent NZ LC Symposium —

Long COVID: Journeying together through the fog (YouTube)
PDFs of slideshows

 

@SNT Gatchaman
Overall excellent presentation from Dr PV. As stated there is a large grey area w.r.t to ME/CFS rehabilitation and he comes from a public mental health model. His models are well known to me and reflect modern psychiatry in Aotearoa NZ. I did not hear or see anything suggesting a BPS approach.

He stated a biomedical approach should be taken (which means excluding all known covid effects first) then looking at other co-morbid physical health disorders then the diagnostic sieving psychiatrists do when taking history and examination from patient then, if they give consent, from family/carers or other people eg peer support, employers, educators, liaising with NGO’s the medical system and cultural advisors. He also uses the bio-psycho-socio-cultural-spiritual model of the RANZCP that I trained with (disclaimer, I trained with him for a few years). And this model differs significantly from the biopsychosocial model that the UK seems to have (with respect to ME) and I hope psychiatrists there have moved on to better models but I have no experience of this form what I read in this forum and other sources. I cannot talk to whether he uses this model as a CL psychiatrist but did not get that impression.

It is my personal experience when working in mental health is that doctors outside the service don’t really understand what psychiatry is or does, actually most of society…But it is a big sector, largely invisible to the public unless it is splashed across media or complaint being investigated etc. It is definitely not perfect and is grossly underfunded compared to medical services in terms of resource and workforce.

It may come as a surprise at how we categorise things. Mental distress does not mean mental illness or psychiatric disorder. Sometimes it can be hard to work out what may be causing that and we have do try and take a longitudinal view, get to know the person and their environment, often with the help of many others, that process would not be a one-off assessment but over a period of time.

 

Yes and reforming the language from a PwME perspective not a “patient” etc is very important to get across to doctors and throughout the health sector (still got a long way to go).

but not a de-stressing disease that BPS, wellness industry, society stigmatises pwME on a daily basis

 

Article in Stuff Business section, woman with a more recent diagnosis of ME/CFS, (after several years of symptoms), who received support from a ME/CFS FB group, is developing a nutraceutical (keratin from sheep’s wool for the hair and nail supplement industry) with help from a life/business coach.

https://www.stuff.co.nz/business/pr...while-suffering-from-chronic-fatigue-syndrome

 

Yes, it highlights some well-known cultural phenomena in NZ. Not all doctors in NZ (I believe) are using the IOM Criteria and quite loosely use the term chronic fatigue syndrome and then ME for legitimacy. I have seen some subtle but blatant advertising for non-evidenced based treatments in my ME/CFS FB support group, often by people who like to spread pseudoscientific disinformation around various topics. Also toxic positivity in life coaches with an amalgam of Pākeha/Māori. (as per this life/business coach). Old as the hills.

 

Did the regional health board consult any Māori with ME about this? Otherwise it could become a case of well-meaning but not necessarily beneficial tokenism.

Also, given the shake up of the health system, should there be some sort of liaison with the new Māori Health authority on this?

Re the term 'ruha karioi', I've asked in some groups (though I suspect they don't reach the Māori community very well).

So far nobody's reporting to have seen or heard the term 'ruha karioi'.

One person uses the term 'ngenge mutunga kore' which translates more or less as 'tiredness without end'. I think it is their own translation for personal use - so it may not be common usage - and they point out that it doesn't contain the syndrome component. On the plus side there are fewer unfortunate alternative meanings with 'ngenge mutunga kore'.

ngenge: tiredness, weariness, exhaustion (but can also mean fat)

mutunga kore: endless, eternal, perpetual, infinite

I don't know if Māori have their own concept of an illness that would map onto ME/CFS but based on Hutan's post it sounds more like 'ruha karioi' is simply a direct translation from English of CF(S). To me it looks like the translator was just given the term to translate without enough context about the CF/CFS confusion, associated stigma, etc.

I'm concerned that any name, especially one that could end up sort of 'official', that lacks a 'syndrome' component will perpetuate in Māori the same problems we have arising from the general confusion between CF and CFS in English.

My knowledge of the Māori language is very basic but the term 'mate xyz' is commonly used for quite a few illnesses so I wonder why it wasn't also used here?

'Mate' does have a few other meanings beside 'sickness, illness, disease'. These are 'death', 'misfortune, problem, defect, trouble, defeat, calamity' and 'desire, need, want' (as in 'I'm in want of food') but with the construction 'mate xyz' there seems to be relatively little risk of confusion (but as I said, I'm no expert in the language).

 

Any chance you can (get the HealthInfo people to) contact Te Reo Komiti to point them to the discussion here? They're obviously the experts in the language, and they'll have a good idea about general stigma in healthcare for Māori, but they may know little about ME politics.

Another thought. Given the controversies around the English names it is a big ask to come up with something better in Māori, especially at short notice. The community would have to first agree on what they want from the name and then find suitable language to express it.

One possible way around that would be to partially translate and partially transliterate for now and use that as a placeholder name until the international community has decided on a final name for ME/CFS that better reflects what ME really is, once we know that, at which point the placeholder can be changed to a better term. For example, I've heard people talk about the 'mate korona' where the first word has been fully translated (disease/illness to mate) and the second word has just had its spelling adjusted (there's no c in the Māori alphabet). Just an idea, for the experts to take up or discard.