News from Aotearoa/New Zealand and the Pacific Islands

Helpful piece on the TVNZ 6 o'clock news, with accompanying article.

https://www.1news.co.nz/2022/09/25/chronic-fatigue-syndrome-i-lost-my-thirties-to-this-illness/

Have to say I don't hold high hopes for the petition (but hope to be proven wrong). The last few words in the article is why

 

Adding to @Ravn's post above on the TVNZ piece. Super impressed not even one ‘chronic fatigue’. Like wow.
mins.

Here it is on youtube, hopefully you can all see it. Don’t suppose youtube vids are geo-blocked but I’m a total Luddite so wouldn’t have a clue!

https://www.youtube.com/watch?v=-YTLmiFiOAg

Edited to add, have not read the article. Not sure if "chronic fatigue" has been mentioned there, just wasn't included in the piece that wen to air.

 

At a recent webinar, Dr Lynette Hodges, Exercise Physiologist, Massey University, asked what pwME would like her to study. Any ideas here? and I can pass on.

This post has been copied and following discussion moved to a new thread: Suggestions for research using CPET

 

50 minute talk (masked) by Dr Anna Brooks on LC and ME, with audience Q&A. A few quotes from the first portion.

"All postviral illnesses... post-infectious illnesses are absolutely real, they're absolutely physiologically caused and there's huge demand and huge urgency to understand why these illnesses happen."

"Of course being sick ... is going to trigger those feelings as well as psychological elements, but that is secondary to your illness - it is not the cause of your illness."

On the severity of fatigue and PEM: "I very much doubt here tonight there is anyone here with these symptoms, because they could not be in this room. So many people with this condition are now shut away from society."

On the spectrum of disease severity: "There are many among us that you would never know have this illness because they go to work, they do their job and they function to their best ability, and they recover over the weekends."

"So we are sort of hypothesising that the two things that underpin the ongoing chronic illness is the fact that you've had widespread vascular... blood vessel... damage and your immune system has been disrupted."

"Another area of neglect is that we walk around with latent viruses. ... These latent viruses could be re-awakened. ... We don't have decent clinical tools to categorically say that."

Smart Talk - Dr Anna Brooks on the looming crisis of Long Covid

 

I would also comment that often we imagine that large countries with big budgets hold the monopoly on the best research. Sometimes it just comes down to the particular researcher, their interests and the random walk of their career path. Sometimes that person lives in a country like NZ.

For example, Anna Brooks at the University of Auckland is trained in analysing the T cell responses particularly relevant to Covid/LC (and probably ME). She also happens to have a top line 5-laser spectral flow cytometer (don't ask me - it sounds like a good one tho). What we lack is government funding, so we're forced to crowd-fund her work, which could be pivotal in this space. To date there has been zero NZ government/HRC funding of biomedical research in long COVID.

 

I see that Dr Vallings recent article in the Journal of Primary Health Care (Journal of The Royal New Zealand College of General Practitioners) has been discussed in another thread in this forum. Thought I'd include the link in this NZ thread for ease of finding later.
https://s4me.info/threads/‘the-lightning-process’-and-chronic-fatigue-syndrome-myalgic-encephalomyelitis-2022-vallings.29760/

 

Good article in the Spinoff, written by a pwME. Quite a long read.

https://thespinoff.co.nz/society/25-10-2022/if-you-get-long-covid-whos-going-to-help

 

Hope to be wrong but this looks more like a tick box exercise designed to confirm the draft document as the consulted-upon final version with maybe some minor cosmetic changes. So I doubt it'll make any difference but an official submission has been made. At least they can't say they didn't know.

 

The petition has now been referred to the Health Committee and ANZMES' submission documents can be downloaded here:

https://www.parliament.nz/en/pb/sc/submissions-and-advice/all?custom=PET_125649

Looks like the Tourette syndrome people had a similar petition going last year, asking to be reclassified as a disability. The response they got was along the lines of Yes we understand you're disabled and it's horrible but we're not going to do anything about it for the time being though maybe, possibly, perhaps at some unspecified time in the future we may conceivably consider the possibility of having another look provided we have more money to play with then... I rather fear ANZMES are going to get the same response. Hope to be wrong. ANZMES provided a lot more evidence in their submission than the Tourette's people did. Maybe that will make a difference.

https://www.parliament.nz/en/pb/pet...f-tourettes-association-new-zealand-recognise

 

ANZMES are members of World ME Alliance who state
"Everyone with ME experiences post-exertional malaise"

Their description of PEM on their website says

it also says

https://worldmealliance.org/what-is-me/

if this alliance is to mean anything, particularly as their main goal seems to be 'engaging' with the WHO, shouldn't they first at least try and agree on a standard description of the 'defining feature of ME' and use it.

 

Not up to reading the submission atm so can't comment on content. Disappointing to see the poor PEM definition and that misguided picture. I wish ANZMES would consult more outside their immediate inner circle, even just for the benefit of a fresh pair of eyeballs to pick up on those simple to fix things and help produce the most compelling submission possible.

Just going by the number of pages somebody clearly did a shitload of work on that submission. But often when you've worked intensely on something your brain gets sort of stuck and you can't see your output clearly anymore, let alone any better alternatives. To break through the block you either have to take a long break or get some outside feedback. And I mean outside outside, as in somebody with genuinely fresh eyes and who's prepared to tell it straight. Can be uncomfortable but almost always improves the final result. In the end we all want ANZMES to be as effective an organisation as possible and we all want this petition to succeed.

 

First session tomorrow 3 Nov. Don't know if you have to be a medical professional to register.

Speakers Nov 3: Tate, Brooks, Dalziel, Vallings, Scheffer

Speakers Nov 8: Jeffreys, Pearce, Hodges, Clifton-Smith, Mepham

More at link, including speaker bios.
https://anzmes.org.nz/long-covid-event/

 

Thank you for that enormous effort on behalf of the ME/CFS community @Hutan

Congratulations! Thank you for making yourself available.