News from Aotearoa/New Zealand and the Pacific Islands

I could only do bits and focused on skipping through the diagnostic to the management part so far. I only half paid attention on the questions bit after that but the round up answer to one at around 1.03 will give anyone wondering whether it is worth a listen in as far as summarising that she seems to be conservative in not recommending anything that might make things worse and being pretty honest about the options. I'd say she seems to very much get ME so it is refreshing to hear such in-depth focus on a specific area with a pretty specific focus on an ME audience and any suggestions seeming to be mindful of the limitations there.

Some solid tips it isn't bad to be reminded of and have 'back-up for' (the salt and fluid things among other things that can 'raise eyebrows of suspicion' from some), things to think about to look into and maybe try but underlining no miracle cures (a tagline I can't be the only one fed up of) in the better way of 'for those more severe that nothing works for, but there are downsides'. Interesting discussion when someone brought up the seeming hot topics of the breathing, vegas nerve type stuff.

NZ don't seem to be bad at being 'straightforward about ME' from the things I've seen - I love the tone in this for once not being patronising but just 'it's another health condition, this is how we and you can approach it, yes yoga isn't really a good one for people with ME because of the exertion so..', it seems 'respectful' by comparison to a lot I've seen. Although I'm aware that could be because the good is getting flagged, so I'd be intrigued if they have the same issues over there or if they are the same level of ideology 'adoption' the UK has?

 

Could NZ limit long Covid? – Expert Reaction
https://www.sciencemediacentre.co.nz/2022/03/09/could-nz-limit-long-covid-expert-reaction/

 

Generally good. Including some very explicit warnings:

But this is still no more than what the patient community figured out, mostly with help from pwME, within months. There is not a single piece of advice or information in there that was not common knowledge by summer 2020 in most patient forums.

This is not expert advice, it's generic common sense advice that anyone can figure out from lived experience, as long as they are not mislead by flawed "expert" advice saying the opposite of reality. Which is an actual improvement over misleading bigotry built on caricatures, but a dismal indictment of the medical profession's performance here.

However pathetic this step is, it really is progress. That's how far we are, when actual progress leaves us at the same spot we were several decades ago.

 

"A group will be established to advise on how New Zealand’s health system will treat potentially thousands of sufferers of long Covid.

The term ‘long Covid’ is used to describe symptoms that linger or develop beyond an acute infection of Covid-19."

"Current treatment for long Covid was “similar to what we would do with chronic fatigue syndrome”, focusing on a rehabilitation framework. A slower recovery was accepted as being the best course of action - not trying to rush back to work and sometimes limiting physical activity, Town said."

https://www.stuff.co.nz/national/12...rch-into-long-covid-and-support-for-sufferers

 

Since when is waiting "rehabilitation"? This is obviously not what rehabilitation is, this is convalescence. Has it become such a dirty word that it can't even be voiced? Or just an obsessive need to frame everything in a way that sounds like doing nothing is the same as doing something, just so credit can be attributed? As otherwise it feels like a waste? Which it is.

How is that different from any alternative medicine where the same principle applies? This is how people actually come to believe that drinking urine cured their whatever. Rest is not a sin, or a crime, or an offense against some deity. It's hard to tell where medical dogma begins and hypercapitalist society obsessed with productivity ends.

Maybe being a programmer makes me too sensitive to this. Nomenclature is incredibly important when you are dealing with information and medicine's nomenclature is inadequate far too often, especially on fundamental concepts, even more so for patient-physician interaction.

 

This was underwhelming to say the least. As @rvallee notes, convalescence is not rehabilitation, but similarly, rehabilitation is not active treatment with curative intent and as was commented privately to me: "Slow recovery for ever and ever and never."

They are equating LC with ME/CFS ("CFS") and certainly more people seem to be reporting their diagnosis moving from "long Covid" to "ME" (or at least "I have now also been diagnosed with ME"). Language though was generally minimising, both in terms of symptom descriptions (headache, fatigue, loss of smell) and duration (up to 12 weeks). While they did highlight cognitive dysfunction there was no mention of lifelong duration and dysautonomia with eg an inability to even stand up. Perhaps they don't want to frighten the horses.

I also note that there was an awkward moment when a journalist asked about GPs gaslighting patients and the response was along the lines of: I would hope no GPs in NZ would be doing this as they have a holistic view. They did emphasise LC is not psychological, but knowing the history of BPS infiltration and clumsy manipulations, you might be left wondering if they are just saying that to satisfy (part of) the audience.

A taskforce is being set up led, not by a physician/scientist, but by the head of allied health. Per the Ministry's web page, allied health encompasses:

• Chiropractic
• Dental therapy/oral health therapy
• Dietetics
• Medical Laboratory Science/Anaesthetic Technology
• Occupational Therapy
• Optometry
• Osteopathy
• Paramedicine
• Pharmacy
• Physiotherapy
• Podiatry
• Psychology
• Psychotherapy

While some of those professions would be relevant, it seems that as with ME there is a failure of conceptualisation and indeed aspiration. Satisfied simply to support. In my view it should be chaired by a physician/immunologist/haematologist, with the stated intent to cure LC and ME.

 

Further on the theme of underwhelming progress, here we have a rather confused definition of PEM but at least they're telling people to not push through symptoms.

https://www.healthnavigator.org.nz/health-a-z/c/covid-19-positive-exercise/

 

I was thinking this today and trying to work out how to get it across. The best I could do was thinking of Maslow's hierarchy of needs and that the new guideline is 'maybe' (if it is implemented) 'giving back' (because it is a reversal of what seems straightforward and patients have been reporting and many who don't bother to read up on ME/CFS assume goes on) the 'survive' bit in services.

ie physiological basic needs. If it were implemented to the max and covered those who were more severe or having to go into hospital and those scenarios where people 'fear for' because of various reasons.

But also hammering and targeting the bad things that are harming people, so sort out hospitals and other services knowing how ill people can get and what they might need, get the very severe tracked down and their care monitored, and yes any places where harms are still done e.g. the children stuff too.

You then have what 'cope', 'live', .... 'thrive'. These are all massive and given the misinformation needs to be tackled as well as health then scientific developments might be the quicker route for this/a necessary part anyway. We aren't even 'accepted'

I was sort of thinking of this when someone was asking about topics for yearly ME day type thing, and wondered whether we needed to underline by doing a 'this is the year of' to sort of show what a low base we are from even basic aims. Maybe it really should be 'survive' then proper biomedical research to give people a chance at anything else going alongside it (just likely for that to take a bit longer) - so a catchier name for survival (stop the harm) + research strategy.

For pacing to even have a chance of working for most ie 'make ends nearly meet on surviving' you need the little treatments that could just be OK'd for people to trial where they do little harm (like B12), strong and robust adjustments, services that get the level of debility so aren't requiring people to harm their health or do without (which harms their health). But also POTs stuff and hearing of people who need/are helped by saline etc. So it hasn't really caught back up to pre-2007 given the biggie from that was consigning everyone to be treated as hypochondriacs and stop the things that did work from being given out.

I'm all for preventing futile testing, drugs etc. but don't get why some things can't be tried given the desperate situation some are in where even if they lie in a bed doing nothing they deteriorate. It's cheaper than leaving people to rot too. There should be a proper confidential database too where people's conditions each year can be monitored and their suggested 'reasons' for any change or even non-change (like had this which helped, but at the same time exertion upped because of x) logged. Hence the clinics being so poor being a big issue as there is noone driving research or caring to listen to feedback from patients on what works and the illness is like from there for various reasons.

And research strategy of the proper type - including basically obvious stuff people assume has been done like annotating how many have what severity, level of debility and being able to describe PEM and how it works (many can only survive by going above baseline for basic needs to be completed then getting rest time to recover from PEM - if they are allowed it - then begin again, many don't realise they are 'in PEM' because daily life doesn't give grace whatever level you are at) so that future research isn't undermined by having a mixed bag of people who they can't log severity, type and stage of PEM as variables (that might matter) for.

 

From the NZ Doctors Stand Up for Vaccination Twitter account.

Edit: deleted now defunct twitter link as the tweet has subsequently been deleted. Evidently replies brigaded by anti-vax BS - sigh. Glad I quoted as text.

 

Lethargy. Interesting how knowing a little more about this often leads to the use of different words than fatigue. Exhaustion is another one.

Hey, it's not as if we've been saying this for decades, or anything like that.

 

From: Dr. Marc-Alexander Fluks

Source: Stuff
Date: April 3, 2022
Author: Nathan Morton
URL:
https://www.stuff.co.nz/national/he...ng-breakthrough-for-chronic-fatigue-sufferers


Long Covid research could bring breakthrough for chronic fatigue sufferers

 

It's an interesting article, I didn't know people with ME are treated so poorly in New Zealand. It sounds a lot like how we are treated in the US.

 

Nothing new here, just nice to see him acknowledged as someone who does good stuff (the website celebrates positive news and good people).

https://dailyencourager.co.nz/ground-breaking-science-with-a-human-touch/

 

World ME Day puts the spotlight on the latest guidance for ME/CFS

https://www.healthychristchurch.org...he-spotlight-on-the-latest-guidance-for-mecfs

 

Zoom Symposium on LC through Otago Uni

https://events.otago.ac.nz/longcovid2022/

 

Unfortunately apart from the titles of the presentations there's no indication yet as to the content. A mixed line up of speakers, e.g.

Anna Brooks on Pathophysiology

Trishia Greenhalgh on Long COVID challenges for New Zealand: Lessons from the UK (video)

 

Emeritus Professor Tate discussing his recent work on the molecular signatures shared between long covid and ME/CFS in the Otago Daily Times

https://www.odt.co.nz/news/dunedin/...1_BaKgxWg_3lL-9IfDoz65t9Cuj-u9IEL2FqjMoHoMa2w

 

How to tackle the Long Covid threat, and how not to
https://www.rnz.co.nz/news/on-the-inside/466934/how-to-tackle-the-long-covid-threat-and-how-not-to

 

Interview on TVNZ

Wellington woman developed neurological symptoms, fatigue and problems with mobility during day 5 of suspected (?confirmed) covid infection. Struggling to get a diagnosis of long covid after 11 weeks. Hospitalised for extensive neurological investigation which found no identifiable pathology. Diagnosed with Functional Neurological (Gait) Disorder and told it is stress. Dr Brooks (research immunologist) explains connection with post infectious/viral syndromes, lack of research (and any research is crowd-funded) discussion of ME/CFS and to seek support from long covid and ME/CFS groups and advice around symptomatic management and medical profession need to upskill themselves.

https://www.tvnz.co.nz/shows/breakf...D84BdEBPxkVogIxSmo_PE7jw1pUnUyyh2-iD1elfwdATk

ETA: Added extra detail