News from Aotearoa/New Zealand and the Pacific Islands

Hutan said:
A study out on The Switch (Mel Abbott - a Lightning Process look-alike). It seems to be the ground work for a planned clinical trial
Thread here.
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There is possibly not a clear answer to this as it asks about motivation, but did we ever reach a conclusion about whether Mel Abbott believes she has developed something different/better than the Lightening Process or if this is a way of not sending a significant chunk of her profits back to the mother ship in Europe?

[added - However one thing is clear she is good at marketing herself to the NZ medical establishment. A friend who is a GP, attended one of her sessions as part of a national GP study day and came away without any inkling of her LP background, rather just the idea that she had lots of sensible practical advice.]
 
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Article on Stuff (by Paddy Gower, a well known TV/print journalist) about a woman with severe ME unable to get home support services.

Includes comment from ANZMES about the difficulties for pwME to get support services as ME not classed as a disability and the problems with a poorly informed health workforce leading to patchy care across the country.

https://www.stuff.co.nz/health/3610...woman-hasnt-left-upstairs-bedroom-four-months
 
Presumably the reappearance of a star to mark the New Year reflects the Māori heritage of long distance navigating. I had not come across this before this year, when I read about the installation/celebration at Government House. It makes subjective sense, in that for me the reappearance of Orion each year, here in the Northern Hemisphere, always feels like the return of an old friend.

Mānawatia a Matariki!
 
RNZ is taking a deep-dive into the hEDS quagmire. One hopes the media attention can drag something out of it that actually helps those affected, even in some small way, but I’m not holding my breath

The piece is not about ME/CFS but the linked podcast (haven’t listened) is headlined “All in her head” so it could well be a case of ‘not about ME/CFS - yet’

www.rnz.co.nz

The girl who couldn’t eat: An RNZ investigation into the controversy over a debilitating illness

How does a young woman go from a high level soccer contract in the US to desperately unwell, in agony and unable to get help from the health system?
www.rnz.co.nz www.rnz.co.nz
 
From the RNZ article:
There is another major, and strongly held concern shared by several doctors RNZ has spoken with. Many specialists believe that overdiagnosis is leading to unnecessary, risky surgeries without a proper case for doing so. The Vascular Society, which represents and trains vascular surgeons, has real concerns about patients like Weatherley seeking surgery overseas.

“We're finding that people have had multiple major surgeries, surgical interventions, and then come back and have exactly the same symptoms. That raises alarm bells,” says the society’s president Dr Kes Wicks.

“What we're saying as surgeons or as a surgical society is that evidence isn't there yet, so it's hard to just jump in there and treat these people. It would be negligent, actually, or irresponsible to do that.”
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An informal, temporary working group on EDS was set up in late 2024. It was led initially by interim national chief medical officer Nick Baker and then Dame Helen Stokes-Lampard, who took over that role. Health NZ has redacted the names of everyone else involved.

The minutes from a meeting in August 2024 say: “Patients feel let down by the health care system when ‘nothing is done.’”
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Yes, that's Dame Helen Stokes-Lampard, now Chief Medical Officer for Health NZ, previously the Chair of the UK Royal College of General Practitioners and Chair of the National Academy for Social Prescribing (ie the GP prescribes exercise). She has been discussed on this forum - eg here and was at the NICE Guideline Roundtable.

It's all very difficult. It sounds as though people are still at risk of dying due to denial of assisted nutrition. And people are still heading overseas for surgeries that may or may not be appropriate.
 
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Hutan said:
Yes, that's Dame Helen Stokes-Lampard, now Chief Medical Officer for Health NZ, previously the Chair of the UK Royal College of General Practitioners and Chair of the National Academy for Social Prescribing (ie the GP prescribes exercise). She has been discussed on this forum - eg here and was at the NICE Guideline Roundtable.
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Dr Stokes-Lampard seemed to be a great supporter of CBT and GET. I wonder what she thinks now? But as in the UK it seems that the system is unable to come up with any sensible advice about 'hEDS'. As discussed here, I tried to get the president of the British Society for Rheumatology to issue a statement about the problem with surgery some years back (maybe five?). I was told that there would be too much disagreement. It was politically too sensitive.

It is interesting to hear Barnden admit that most hEDS enthusiasts picked it up in the UK. I am well aware who they picked it up from - people who never had any evidence.
 
On 10 August 10-11am Long Covid Aotearoa and this podcast will be streaming a chronic illness political panel discussion on FB (there's an election coming up in NZ). So far four parties appear to agreed to participate

Currently they're collecting questions to ask on FB. ANZMES and CCIS are also involved in this part

I'm not clear where and how the streaming is going to happen, could be at the websites linked above and/or on FB
www.facebook.com/longcovidsupportaotearoa
www.facebook.com/sickandtiredaotearoa
 
In case it's useful to anyone

I stumbled across this NZ research repository while I was looking for something about local ecology. Of course I got sidetracked and typed 'myalgic' into the search box...

Annoyingly the search result list incorrectly classifies everything as a research paper, you have to click on each item individually to see if it's actually a paper or a thesis or whatever. And if anyone can figure out a way to order results by date, newest to oldest, please let me know

I don't know how comprehensive the repository is and also don't have the capacity atm to go through the search results to see if there's anything interesting we've missed
 
Forthcoming webinar from Chris Ponting with an update on DecodeME, SequenceME and work on Long Covid genetics, hosted by NZ ME/CFS charity ME Support.

24 September 7 to 8 pm NZ time
(I think that is 24 Sep 8 am in the UK.)
 

Attachments

Ravn said:
RNZ is taking a deep-dive into the hEDS quagmire. One hopes the media attention can drag something out of it that actually helps those affected, even in some small way, but I’m not holding my breath

The piece is not about ME/CFS but the linked podcast (haven’t listened) is headlined “All in her head” so it could well be a case of ‘not about ME/CFS - yet’

www.rnz.co.nz

The girl who couldn’t eat: An RNZ investigation into the controversy over a debilitating illness

How does a young woman go from a high level soccer contract in the US to desperately unwell, in agony and unable to get help from the health system?
www.rnz.co.nz www.rnz.co.nz
Click to expand...
I must admit that this goes way over my head.
It starts with Lizzy posting an essay on how it is to live with severe ME:



Lizzy​

@hopefullizzy.bsky.social

Some days this illness feels suffocating.
I’m usually really positive, I look for all the tiny goods in my days, there are always goods, and I always find them.

But sometimes the realisation of how different life is and how cruel this illness is hits me.

Here’s what I mean:



Severe M.E strips away all parts of the ‘normal’ human experience.

- Hobbies
- Self Expression (what clothes you choose to wear, the ability to laugh raucously, or sing, or dance.)
- Personal hygiene (how you wash, when you wash, and which parts are washed/brushed) (& I mean wiped down, in bed.)



- How you interact with friends, partners, and family, keeping connections, because you’re too unwell to see loved ones, too unwell to call or videocall, & often too poorly to text.
- What (or if) you can eat or drink
- Using the toilet (mostly we are having to use bedpans or commodes by the bed.)



- What you can do in your day (many healthy people use tv or music or craft to relax, but those things are a luxury and come at huge energy cost.)
- How you move, turning, leaning, bending and reshuffling are basic, but are big to us, sometimes impossible.



Everything becomes tolerated by the body or (more often) not tolerated.

The strength of people enduring Severe/Very Severe ME (or any) is astounding.

Your whole world is shrunk bit by bit until you’re reduced to a body in a bed, as you try desperately to grasp any last bit of what makes you YOU.
​


Then Sarah Boothby writes a comment.



sarah boothby

@swastrosarah.bsky.social

Pls, get off your phone.
I know it's the only socialising left but I have seen how PEM kills.
@england.nhs.uk only knows how to provoke deterioration.
They will tube feed only when your death means paperwork for staff.
You must rest more deeply.
It's vvv hard to stop the cumulative effect of #PEM
​


Lizzy replies:



I’m already TPN fed. I know what I can do and when (to an extent) and it keeps me going. So with respect, I’ll stay when I can.

​


Eventually, Sarah Boothby mentions this:



In same spirit, from past exchanges, I suspect you were misdiagnosed.
hEDS is not #ME but NHS sponsored medicine knows no difference.
What do you think?
BACME have just published a small study on tube feeding.
I'll share the link when I'm on mains px.

Asking because differential diagnosis is critical to safe medical management.
I'm sure you will protect your privacy and I do not expect a reply.
This is a public space where I post only in hope of better care.

Lizzie is remarkable.
I'll share the BACME link asa, but you'll find it sooner.
It's a study worth reading.
Meanwhile, if you have capacity, have a listen to this radio NZ podcast on hEDS.
ME is not mentioned.
www.rnz.co.nz

All In Her Head podcast

When doctors can't agree on a diagnosis, who is believed?
www.rnz.co.nz www.rnz.co.nz



Am I missing something?
Is the latest idea in certain circles that hEDS gets misdiagnosed as ME/CFS?
 
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