News from Aotearoa/New Zealand and the Pacific Islands

Hutan · Mar 14, 2021

I feel a bit, ambivalent?, about this interview. It was mostly about his two books, although David gave a very good description of the cognitive challenges of ME/CFS. I think the casual listener would have understood that ME/CFS is very debilitating, and the interviewer was, as she has been for a number of other ME/CFS related interviews, sympathetic. She expressed genuine admiration for David's achievements, regardless of, and despite, the challenges created by the illness. I wonder if she has had some personal experience of the illness.

However, I'm not sure what impression the interview would have made on listeners who know little about ME/CFS, or have a vague idea that it's largely a psychosomatic condition. The interviewer, as many interviewers are, was keen to develop a theme, and the theme she was pushing was 'physicality as an embodiment of trauma'. It was never explicitly applied to David's illness, but I felt there was an inference. There was little detail given about David's history, but he did talk about having problems coping with the success that his first book brought him, and having mental health challenges, compounded by the death of a sibling and a heart attack, followed by his ME/CFS worsening. The cause and effect was not clear, or whether the ME/CFS was there prior to the mental health difficulties. And, in any normal interview, it would not need to have been.

I'm aware I evaluate people who appear in the media to talk about their ME/CFS against a very high standard. I guess it's a product of the lack of understanding of ME/CFS, and the rarity of ME/CFS appearing in the media, and the fact that every presentation of ME/CFS in the media does affect how I and my son and many other people I care about are treated.

David Coventry said that he has nearly finished his next book, 'auto fiction' - a fictionalised account of his life, with ME/CFS front and centre. He mentioned that it will not be documentary-like, unlike the film Unrest. He spoke very highly of the Unrest film, and I know many people with ME/CFS also have high regard for that film, but I have always had a different view. And so I feel a little concern about David's forthcoming book.

It sounds as though David's books are very good, and he obviously thinks about things deeply. I think he has developed enough of a profile that his next book will get quite a lot of media attention in New Zealand. I hope that's a good thing.

Subtropical Island · Mar 14, 2021

Hutan said: ↑

I feel a bit, ambivalent?, about this interview. It was mostly about his two books, although David gave a very good description of the cognitive challenges of ME/CFS. I think the casual listener would have understood that ME/CFS is very debilitating, and the interviewer was, as she has been for a number of other ME/CFS related interviews, sympathetic. She expressed genuine admiration for David's achievements, regardless of, and despite, the challenges created by the illness. I wonder if she has had some personal experience of the illness.

However, I'm not sure what impression the interview would have made on listeners who know little about ME/CFS, or have a vague idea that it's largely a psychosomatic condition. The interviewer, as many interviewers are, was keen to develop a theme, and the theme she was pushing was 'physicality as an embodiment of trauma'. It was never explicitly applied to David's illness, but I felt there was an inference. There was little detail given about David's history, but he did talk about having problems coping with the success that his first book brought him, and having mental health challenges, compounded by the death of a sibling and a heart attack, followed by his ME/CFS worsening. The cause and effect was not clear, or whether the ME/CFS was there prior to the mental health difficulties. And, in any normal interview, it would not need to have been.

I'm aware I evaluate people who appear in the media to talk about their ME/CFS against a very high standard. I guess it's a product of the lack of understanding of ME/CFS, and the rarity of ME/CFS appearing in the media, and the fact that every presentation of ME/CFS in the media does affect how I and my son and many other people I care about are treated.

David Coventry said that he has nearly finished his next book, 'auto fiction' - a fictionalised account of his life, with ME/CFS front and centre. He mentioned that it will not be documentary-like, unlike the film Unrest. He spoke very highly of the Unrest film, and I know many people with ME/CFS also have high regard for that film, but I have always had a different view. And so I feel a little concern about David's forthcoming book.

It sounds as though David's books are very good, and he obviously thinks about things deeply. I think he has developed enough of a profile that his next book will get quite a lot of media attention in New Zealand. I hope that's a good thing.
Click to expand...

I (idly) wonder if anyone knows how to reach him to offer a proof-reading of his “auto-fiction” which specifically addresses ME/CFS?
I know that every book needs a good number of proof reads and readers for a good result (I’ve done this myself for a few friends who are authors - I just read through and mark suggested changes and the author reviews, accepts most and rejects a few or else rewrites it another way). So, another proof read with an ME/CFS awareness might be quite helpful (to him but also to all of us). To avoid inadvertent errors or accidentally misleading turns of phrase.

mango · Mar 15, 2021

Subtropical Island said: ↑

I (idly) wonder if anyone knows how to reach him to offer a proof-reading of his “auto-fiction” which specifically addresses ME/CFS?
I know that every book needs a good number of proof reads and readers for a good result (I’ve done this myself for a few friends who are authors - I just read through and mark suggested changes and the author reviews, accepts most and rejects a few or else rewrites it another way). So, another proof read with an ME/CFS awareness might be quite helpful (to him but also to all of us). To avoid inadvertent errors or accidentally misleading turns of phrase.
Click to expand...

Yes, there's even a word for this kind of service: sensitivity readers.

Ravn · Mar 15, 2021

Hutan said: ↑

I feel a bit, ambivalent?, about this interview. It was mostly about his two books, although David gave a very good description of the cognitive challenges of ME/CFS. I think the casual listener would have understood that ME/CFS is very debilitating, and the interviewer was, as she has been for a number of other ME/CFS related interviews, sympathetic. She expressed genuine admiration for David's achievements, regardless of, and despite, the challenges created by the illness. I wonder if she has had some personal experience of the illness.

However, I'm not sure what impression the interview would have made on listeners who know little about ME/CFS, or have a vague idea that it's largely a psychosomatic condition. The interviewer, as many interviewers are, was keen to develop a theme, and the theme she was pushing was 'physicality as an embodiment of trauma'. It was never explicitly applied to David's illness, but I felt there was an inference. There was little detail given about David's history, but he did talk about having problems coping with the success that his first book brought him, and having mental health challenges, compounded by the death of a sibling and a heart attack, followed by his ME/CFS worsening. The cause and effect was not clear, or whether the ME/CFS was there prior to the mental health difficulties. And, in any normal interview, it would not need to have been.

I'm aware I evaluate people who appear in the media to talk about their ME/CFS against a very high standard. I guess it's a product of the lack of understanding of ME/CFS, and the rarity of ME/CFS appearing in the media, and the fact that every presentation of ME/CFS in the media does affect how I and my son and many other people I care about are treated.

David Coventry said that he has nearly finished his next book, 'auto fiction' - a fictionalised account of his life, with ME/CFS front and centre. He mentioned that it will not be documentary-like, unlike the film Unrest. He spoke very highly of the Unrest film, and I know many people with ME/CFS also have high regard for that film, but I have always had a different view. And so I feel a little concern about David's forthcoming book.

It sounds as though David's books are very good, and he obviously thinks about things deeply. I think he has developed enough of a profile that his next book will get quite a lot of media attention in New Zealand. I hope that's a good thing.
Click to expand...

[The bit where he talks about ME starts around minute 22 of the interview.]

Good summary by @Hutan.

The discussion of his first two books didn't give me much idea as to what to expect from this writer so went looking for audio versions. In English, zero luck. But his first book, The Invisible Mile, has been translated into several languages and one of the translations does have an audio version: Danish. Which I just so happen to understand . That book's now on my ever lengthening listening list.

But I'm nervous about the upcoming autofictional book, too. By definition he'll be primarily writing about his own personal experience of ME and that's his truth and fair enough. Problem is, given how heterogeneous ME is, his experience may not be widely representative. In an ideal world this shouldn't be an issue - and it's soooo frustrating that we have to worry about this - but in the context of the general ignorance, prejudice and stigma around ME there's a lot of room for things to go wrong and for harmful ideas to be reinforced, however unintentionally.

On the other hand he seems to be an accomplished writer and a deep thinker. Maybe he'll get it just right and that could be a real boon. In which case I hope they put the book out as audio, too, preferably in English. It's just a bit too weird having to listen in Danish to a book written in English by a NZ author.

Hutan · Mar 15, 2021

Subtropical Island said: ↑

I (idly) wonder if anyone knows how to reach him to offer a proof-reading of his “auto-fiction” which specifically addresses ME/CFS?
Click to expand...

Yes, I've wondered if reaching out to him might be good. But, at the same time, I feel as @Ravn said, it's his truth. It feels maybe unreasonable for someone to bear the weight of expectation of a whole illness community when they write about their own experience?

https://en.wikipedia.org/wiki/David_Coventry. Wellington based. Maybe he'd like to go to Carolyn's talk.

https://www.wgtn.ac.nz/modernletters/our-students/phd-profiles/david-coventry
Last one from me about David Coventry:

David says: 'I'm writing a novel-memoir hybrid examining the problems of adequately representing life with ME/CFS. Indeed, the result book will not attempt to represent the disease, but rather enact the experience of cognitive impairment and severe fatigue through formal experimentation and language's inherent tendency to destabilise and deform the known.'
Click to expand...

Interesting, and difficult to imagine.

Subtropical Island · Mar 17, 2021

Hutan said: ↑

Yes, I've wondered if reaching out to him might be good. But, at the same time, I feel as @Ravn said, it's his truth. It feels maybe unreasonable for someone to bear the weight of expectation of a whole illness community when they write about their own experience?
Click to expand...

I agree, it’s his book, his experience and he doesn’t need us editing or censoring it for him.

My thought was that the (essential) proofing stage is a good time to review for minor changes and phrases (not actual edits) which might make a big difference to how the audience reads the book.
I just thought that some of the people who do this job might also be experienced with ME/CFS so that some of the usual search for errors, typos, or places where ambiguity is undesirable and ironing them out, might be done by people who are genuinely familiar with the subject material (rather than thinking they ‘get it’ when they don’t). Like having people who are involved in competitive swimming proof a book that involves someone who competed in the olympics in swimming.

Not so much telling him how to write, but giving him feedback - before it becomes public - on how it might be read. And how it might be better phrased to get his point across.

Not to prescribe nor proscribe what he writes but to give him the chance to get it just right for himself.

But this is just pie in the sky if no-one knows him (or the publisher) to make the offer.

Hutan · Mar 26, 2021

Carolyn Wilshire said: ↑

Hi all, for anyone around the Wellington region who has the spoons to travel to Vic Uni, and listen to an hour-long talk, I though I'd let you know about the talk below. While the focus will be on improving Psychology research, I'll also be recounting the entire story.

Title: The PACE trial for chronic fatigue syndrome: Lessons for clinical psychological science

When: Friday March 27, 12-1pm
Click to expand...

Someone I know who was able to attend said that this was a success. 'Heartening to see the good response from the room'. That's all the details I have so far. Thanks Carolyn!

OverTheHills · Mar 26, 2021

RoseE said: ↑

Any ideas for people living in the Wellington region that might be able to help out with WellME?...
Click to expand...

Oh dear, it looks like the most likely outcome is that WellMe is going to be taken over by CCIS Tauranga, becoming CCIS Wellington.

I am no longer a member of WellMe so will not be at the SGM where they will decide, but I believe CCIS Tauranga are the people who run the "Towards Wellness" course. There was a thread about this course and the people behind it a while back. So the prospect sounds very dire.

I believe @Hutan posted upthread about the vacuum caused by ANZMEs leaving regional ME/CFS organisations weak.

Thats enough from me, I expect this is barely coherent, I leave further discussion to those with functioning brain cells

Daisybell · Mar 26, 2021

CCIS Tauranga are very short of board members I think. They have been advertising for some time. They have had quite a staff change-over too in the past couple of years. Not sure what is going on or whether it is positive change! Hopefully so....

Carolyn Wilshire · Mar 27, 2021

Hi all, my talk on PACE ran yesterday (Fri March 26) at Vic Uni, to a packed audience (well, it was a small room..). Will post a link to the recording here as soon as I have it.

Robert 1973 · Mar 27, 2021

Carolyn Wilshire said: ↑

Hi all, my talk on PACE ran yesterday (Fri March 26) at Vic Uni, to a packed audience (well, it was a small room..). Will post a link to the recording here as soon as I have it.
Click to expand...

Great. Will look forward to watching it.

Can I suggest you set it up as a new thread and post a link to the thread from here so that more people see it?

Thanks for all your work on this, Carolyn.

RoseE · Apr 3, 2021

Interesting interview on Kim Hill's Radio NZ Saturday Morning programme today

David Putrino: Covid’s “Long Haulers”

Lingering symptoms such as crippling fatigue, "brain fog", breathlessness, heart palpitations, chest pain and aching muscles or joints are a grim reality for a subset of people infected with Covid-19. Women are more likely to be affected than men and it can hit people whose infections were mild or who were asymptomatic. Many of these Covid "long haulers" feel they are not being listened to by their doctors and have had their distress dismissed. Dr David Putrino is the director of rehabilitation innovation at Mount Sinai Hospital in New York and works with Covid-19 patients at Mount Sinai's Center for Post-Covid Care.
Click to expand...

Dr Putrino talks about what they are noticing (low CO2 levels, high heart rates, post exercise malaise, all have low cardiac size) and what they do to support rehabilitation. The clinic is getting around 30% improvement in symptoms in 150 days. He sees similarities with ME /CFS and hopes what is found thru treating long covid helps other medically unexplained syndromes.
I think he is originally from Australia?

https://www.rnz.co.nz/national/prog...2018790174/david-putrino-covid-s-long-haulers

RoseE · Apr 3, 2021

Hutan said: ↑

This item will be on Radio NZ in an hour or so - was promoted as the person having 'ME', although I see the schedule refers to 'chronic fatigue'.
David Coventry on his late start to writing, inspiration behind his novels and coming to terms with his Chronic Fatigue
Click to expand...

Just including the link to the interview on 15th March with David for easy reference
https://www.rnz.co.nz/national/prog...-coventry-on-arriving-at-things-later-in-life

Trish · Apr 3, 2021

Interesting interview with Putrino. Their treatment regime seems to be in 3 stages.
1. Stabilise by teaching the patients to avoid activities that cause a rapid increase in heart rate, eg physical activities, and getting into a hot shower.
2. He says 100% have hypocapnia, ie low carbon dioxide in their breath. They use breathing coaching methods to normalise this, and says that makes patients feel a little bit better.
3 then he says they are ready for rehabilitation, but he didn't specify what that involves.

He says echocardiograms were all normal, except they noticed, when they looked at the data across the whole patient cohort, that all the patients hearts were at the bottom end of the normal size range, and that after rehab they return to normal size (I think that's what he said.)

He said complete recover is only a tiny number of their patients so far. The improvement rate of 30% was only partial improvement, I think, so not so impressive, given that a high percentage of people with post viral syndromes recover completely in the first year or so without any treatment.

Snow Leopard · Apr 3, 2021

Trish said: ↑

Interesting interview with Putrino. Their treatment regime seems to be in 3 stages.
1. Stabilise by teaching the patients to avoid activities that cause a rapid increase in heart rate, eg physical activities, and getting into a hot shower.
2. He says 100% have hypocapnia, ie low carbon dioxide in their breath. They use breathing coaching methods to normalise this, and says that makes patients feel a little bit better.
3 then he says they are ready for rehabilitation, but he didn't specify what that involves.

He said complete recover is only a tiny number of their patients so far. The improvement rate of 30% was only partial improvement, I think, so not so impressive, given that a high percentage of people with post viral syndromes recover completely in the first year or so without any treatment.
Click to expand...

When people make claims like "100% have hypocapnia", they lose credibility to me. Markers like this never have 100% sensitivity, I doubt he has quality data to back up that claim.

Unless we see data from a randomised (such as a crossover trial) cohort, with objective outcome measures of functioning, I'd suggest taking these claims with a dose of scepticism.

Trish · Apr 3, 2021

I agree, @Snow Leopard. I found the whole thing pretty unconvincing, though interesting.

Jonathan Edwards · Apr 3, 2021

I don't understand the physiology of Covid hypoxia but if it is true that it is often not recognised by the patient (or prime minister) then maybe hypocapnia is the needed drive to ensure oxygen levels do not sink further. I think if you are going to introduce a treatment designed to stop people breathing so much (which would be what would reduce hypocapnia) you should have some pretty hard data. After all about 30% of people hospitalised with Covid are getting readmitted after discharge with various forms of organ failure. It does not sound as if there are any hard data here.

RoseE · Apr 20, 2021

Health system reform announced today

https://www.stuff.co.nz/national/po...an-to-centralise-healthcare-will-abolish-dhbs

“The reforms will mean that for the first time, we will have a truly national health system, and the kind of treatment people get will no longer be determined by where they live,” Little said, at an announcement in Parliament on Wednesday...

The Government intends for the “first truly national public health service”, called Health New Zealand, to be responsible for hospitals across the country. It would have four regional divisions.

“Our system has become overly complex. It is far too complicated for a small nation. We simply do not need 20 different sets of decision-makers,” Little said in a speech.
...
“We are going to put the emphasis squarely on primary and community healthcare and will do away with duplication and unnecessary bureaucracy between regions, so that our health workers can do what they do best - keep people well,” Little said. Alongside Health NZ will be the Māori Health Authority."
Click to expand...

https://www.nzherald.co.nz/nz/major...ational-authority/FWX6HSAAOATQR5AL3B4U6KIOTE/

• All DHBs [District Health Boards] will be replaced by one national health body, Health New Zealand, to fund and run the health system
• A new Māori health authority will be created, with power to commission health services
• The Ministry of Health will become an advisory and policy agency only
• A new Public Health agency will be created within the Ministry of Health
...
Today's announcement is not the full extent of the Government's major healthcare shake-up and there will be further announcements on the disability sector.
...
Its [Public Health Agency] main role will be to lead New Zealand's overall health strategy, policy, analysis and monitoring of the entire health system. "It will monitor threats to our health and ensure we are ready to deal with them," Little said. In other words, there will be a shift in the Government's health priorities towards prevention.
Click to expand...

Official information website:
https://dpmc.govt.nz/our-business-u...alth-and-disability-system-review/information

RoseE · Apr 20, 2021

RoseE said: ↑

Official information website:
https://dpmc.govt.nz/our-business-u...alth-and-disability-system-review/information
Click to expand...

Primary & Community Care:
https://dpmc.govt.nz/sites/default/...sheet-primary-and-community-care-en-apr21.pdf
"Over the next few years, primary and community services will be reorganised to serve the communities of New Zealand through ‘localities’. Every locality will have a consistent range of core services, but how these services are delivered will be based on the needs and priorities of local communities."

Services for disabled people
https://dpmc.govt.nz/sites/default/...eet-services-for-disabled-people-en-apr21.pdf
"Our health and disability system has not performed consistently in providing Disability Support Services (DSS) or quality health care and achieving equitable health outcomes for the disabled community... The Government has yet to decide the future of DSS following feedback from the disabled community on the Health and Disability System Review. The Ministries of Health and Social Development will provide advice on the future of DSS later this year. That advice will follow further work with the disabled community based on the principles of Enabling Good Lives and advice developed as part of the machinery of government review of DSS."

Sly Saint · Apr 21, 2021

Complex Chronic Illness Support (CCI Support)

Complex Chronic Illness Support (CCI Support) is a charitable organisation which exists to ‘Empower People Towards Wellness’ by providing support, connections, education, and advocacy to clients who experience complex chronic illness, their whānau, and their communities. Complex chronic illnesses include Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS), Fibromyalgia, Post-Viral Fatigue / Syndrome, Dysautonomia and Long Covid.*
Those with complex chronic illness experience symptoms which severely impact their day-to-day life, such as extreme physical and mental fatigue, muscle and joint pain, impaired memory and concentration, sleep disturbance, headaches, gastrointestinal issues, and anxiety. Established in 1981 in Tauranga, CCI Support works with clients in the Bay of Plenty, Lakes district, Waikato (including the coromandel), and throughout New Zealand, delivering an essential service where support and resources from the medical sector is limited. CCI Support clients access our services following a referral by their health professional, or alternatively through a self-referral form on our website.
Click to expand...

https://www.supporttrust.org.nz/support-organisations/cci-support-organisation-nz/

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