News from Aotearoa/New Zealand and the Pacific Islands

Ravn said:
Just out of interest, does anyone have access to the e-learning assessment on this article? If I understand this correctly, doctors can read the article and then do some sort of assessment to claim some sort of continuing education credits?
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The article hasn't been put into the elearning area yet (as at last night). Once it is, we will check what the assessment is.
And yes, a GP would get 1 Credit for it, as per the note at the top of the first page of the article 'You can get 1 credit by completing the ELearning assessment for this article in nzdoctor.co.nz' alongside their Elearning graphic. 1 credit indicates an expectation that one hour will be used to read the article, do the assessment and reflect on the article.

My understanding is that the questions under 'Do you need to read this article?' at the front of the article were to help the reader determine if they needed to read it. And answers were provided for these on page 27 of the publication. I got the impression that the elearning assessment will have a different set of questions. But don't know for sure yet.

Edit: Oh. there is this box down the bottom right corner of the first page too....
 

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If you live with ME in NZ, please consider accepting this invitation from the ODI (New Zealand Office for Disability Issues) to participate in a survey on the issues and risks being experience by disabled people in the COVID-19 environment.

There is an opportunity in the survey to note the ME/CFS organisation that you are connected with, and to raise particular concerns about living with ME.

Let's ensure that our experiences are included.

Questions in the survey cover different topics, including information, safety, access to supplies and services, and how you are going.

Each week the ODI will close the survey, analyse the results, and report them to government agencies, disability organisations and the Minister for Disability Issues.

The survey will then be repeated the next week. They hope that you will do the survey again, but you don't have to commit to that. The survey may be repeated less frequently over time.

These groups were involved in developing the survey with government: Disabled People’s Organisations (DPO) Coalition; IHC Advocacy; CCS Disability Action; the New Zealand Disability Network (NZDSN) for getting involved with this survey.

https://www.odi.govt.nz/whats-happening/survey-how-life-is-going-for-the-disability-community/
 
For International ME/CFS Awareness Day on the 12th of May, MECFS Canterbury is planning to release a video showing the public that the level 4 "Lockdown" is what many people with ME/CFS have been living through for years due to being house or bed bound.

They would welcome the participation of people with ME/CFS living anywhere. If you have a smartphone, webcam or video camera this is something that might be easy for you to be involved in.

What they are asking for is if you could send a video of yourself or a family member saying;
  • "My name is/My daughter's/mother's etc name is ........ I/they have ME/CFS and I/they have been in lockdown for ........ years".
A couple of tips for taking the video:
  • Film it in landscape
  • and hold the phone/device at eye level.
You can send the video by email to support@mecfscanterbury.nz.
Thank you so much to those who are willing to participate!

The videos will be compiled together with an intro about what ME/CFS is, etc.
 
RoseE said:
For International ME/CFS Awareness Day on the 12th of May, MECFS Canterbury is planning to release a video showing the public that the level 4 "Lockdown" is what many people with ME/CFS have been living through for years due to being house or bed bound.

They would welcome the participation of people with ME/CFS living anywhere. If you have a smartphone, webcam or video camera this is something that might be easy for you to be involved in.

What they are asking for is if you could send a video of yourself or a family member saying;
  • "My name is/My daughter's/mother's etc name is ........ I/they have ME/CFS and I/they have been in lockdown for ........ years".
A couple of tips for taking the video:
  • Film it in landscape
  • and hold the phone/device at eye level.
You can send the video by email to support@mecfscanterbury.nz.
Thank you so much to those who are willing to participate!

The videos will be compiled together with an intro about what ME/CFS is, etc.
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I've just highlighted that in these 2 places:

 
Survey from M.E. Awareness NZ...

We invite you to complete the "2020 Survey - Living with ME in NZ".
To get started, go to https://bit.ly/2020SurveyME

The purpose of this survey is to investigate how People with ME* manage their illness in New Zealand. The statistics and information from this survey will be used to provide evidence of people's experiences to the NZ Government, relevant organisations, and the general public.

* ME is Myalgic Encephalomyelitis. Sometimes referred to as Chronic Fatigue Syndrome, ME/CFS or Tapanui Flu.

Who can complete the survey?
✦ People of all ages living with ME in New Zealand are invited to complete the survey.
✦ Support people and carers can answer the survey on behalf of the person with ME that they support.
✦ Please share the survey with other people that you know with ME, to help get as many experiences as possible included in the survey results.
+ Online form - https://bit.ly/2020SurveyME.
+ Pdf for printing - https://bit.ly/2020SurveyMEpdf
+ Or email us on m.e.awareness.nz@gmail.com to request that we send out a printed copy.

We hope you will be able to participate. We want your story of living with ME included in the results. We need to let the NZ government know about some of the realities of life with ME!

All of the questions in the survey are optional, and you can take your time to complete it. We expect that the survey will take about 20 minutes, although it does depend on how much you want or have to say. We would love to have some responses back by 8th May, but will leave the survey open until 1st of August 2020.
 
According to the latest MEISS newsletter there's going to be an ME documentary later this year.
Dr Vallings and ANZMES Face of ANZMES Richie Barnett have been interviewed (thankfully just before the lockdown) and will be on a documentary that will be released about September this year and is being made by TV1.
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That's all the information I have.
 
An early start to ME Awareness Day, several short articles in a small weekly community paper (sorry, can't copy and paste):
a patient story,
a short interview with Prof Tate (doesn't say anything new about his research),
and a short interview with the leader of a local support group.​

The theme is the invisible nature of ME and trying to demystify that is a good idea, if rather ambitious I think.

Not sure though that these articles make things a lot clearer to those who don't already know ME first hand. Admittedly, when you're an expert in something it can be very difficult to write for readers without any background knowledge. But talk of post-exertional fatigue just... Should. Not. Happen. Least of all should it come from a patient organisation.

http://www.thestar.co.nz/digital-edition/?edition=STR_2020_05_07 (print pages 20 & 21)
 
From MECFS Canterbury for ME/CFS Awareness Day...

____________________________
Many people living with Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS) live in permanent lockdown.

There are currently no approved treatments for ME/CFS, which means that many people are left house or bed bound. Only 5% of people with ME/CFS recover so this situation is often permanent. In this video you will see, that for some, this has meant decades in isolation.

We remember and acknowledge those living with ME/CFS today, on international ME/CFS Awareness Day.

When you move out of lockdown soon - and get back into a fulfilling life with a variety of choices and activities - we ask you to remember about those that will stay in lockdown because they have ME/CFS.

Are you able to make a difference for the people that live in lockdown with the chronic illness ME/CFS?

✦ If you know someone with ME/CFS, offer support, keep in touch, spread awareness.

✦ Donate to groups like ours that support and advocate for people with ME/CFS www.givealittle.co.nz/org/mecfs-group-canterbury-inc

✦ Advocate for the services that improved your life during lockdown to continue for those in permanent lockdown.
Services like... health care consults via phone & video, options to work and study flexibly from home, online ordering, priority supermarket ordering.

____________________________
For more about our organisation, please visit www.mecfscanterbury.nz.
For other support groups in New Zealand visit www.anzmes.org.nz/what-is-me/support/
 
An article in the NZ Herald, involving Complex Chronic Illness Support, the regional support group in the Bay of Plenty (https://ccisupport.org.nz/).

https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12331040

While May has been significant for all sorts of Covid related reasons, for one group of New Zealanders, May is a time to campaign and raise awareness of an often crippling illness.

May is International ME/CFS Awareness Month. ME campaigners like Elizabeth McGougan, see this as the perfect opportunity to remind people that while the country experienced being home-bound for four weeks, people with ME experience this almost every day of their lives.

"Living in level 3 is how we normally live," McGougan said.
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An article on Radio New Zealand in their 'Comment & Analysis' section from Louise Thornley, to mark International ME and Fibromyalgia Week.
https://www.rnz.co.nz/news/on-the-i...th-fibromyalgia-when-lockdown-has-no-end-date

Louise Thornley asks...

✦ What is life like for the tens of thousands of New Zealanders who live with these lockdown-inducing illnesses?

✦ What are some changes that would make life easier for people with ME and fibromyalgia?
 
News from a member of M.E. Awareness NZ...
On Tuesday, 9th June, RNZ's Nine to Noon show will be interviewing US author Sarah Ramey (at 10.05). She has written a book about her journey with ME/CFS and other conditions - and analysing what needs to change. The link to her book is below, the hard copy will get to NZ in July.

Sarah has /still has ME and also complex regional pain syndrome. She finds some ways to partially improve her quality of life but she's still living with pain, fatigue and other symptoms. She groups various conditions into one category of misunderstood illnesses so the interview won't have an exclusive focus on ME. Her book strongly exposes the misunderstanding/disbelief issue and its effects on people.

I found this a brilliant, powerful, practical read. I think she's done an incredible job of summarising research and her analysis is fascinating. The title specifies women but it's also inclusive of all. It's a large book so not for everyone obviously, but recommended if you are up for book reading at present.

Amazon product ASIN B01N7H5IDX
The advantage of listening live is that you get to hear listeners' feedback, or to text in a question or comment.

Link to the radio show https://www.rnz.co.nz/national/programmes/ninetonoon​
 
Updated donation page for Prof Tate's team's research 2020-2021. They do need more money to complete their planned programme.
I'm a bit lukewarm on B and C but A sounds interesting.
Professor Tate’s ME/CFS research programme for 2020/2021
(A) Epigenetic code dynamics
In 2019 we have shown in ME/CFS patients changes in the dynamics of the epigenetic code - a DNA code that responds to environmental /nutritional and disease influences – this is a genomic regulatory system linked to changes in gene expression around the on/off switches of genes. This could explain the hypometabolic state in the 2016 Stanford University study of plasma metabolites, and our own studies of the expression profiles of the genes that suggested ME/CFS patients are in a ‘state of hibernation’. This has enabled us to deduce which individual genes are affected, and how that translates into lower efficiency of biochemical pathways that might be sustaining ME/CFS. Now in 2020/2021 we are examining epigenetic changes through ‘relapse recovery cycles’, and seeking to see whether it can explain the core symptom of ME/CFS, ‘post exertional malaise’

(B) Neuro-inflammation
At the end of 2018 we published an hypothesis for how ME/CFS might be being sustained as an ongoing illness involving the hypothalamus and the stress centre within it. This has been featured recently by Health Uprising. 2019 brought new ideas relevant to this hypothesis and in 2020/2021 we are trying to connect these and test an hypothesis for ME/CFS that a stress hormone produced in the stress centre of the hypothalamus, and a defective receptor for it, causes excessive production of serotonin. In 2020/2021 we are analysing DNA samples from our ME/CFS patients for evidence of mutations in a gene responsible for degrading tryptophan –the precursor to serotonin - and whether ME/CFS patients have excessive serotonin levels.

(C) Energy production
In 2019 we determined by mass spectrometry that there were major changes in many protein components of the energy producing complexes and regulators of damaging reactive oxygen species in the energy powerhouses of the cell - the mitochondria. We can deduce that the mitochondria are trying harder to produce energy because we think the key last step is somewhat defective. This work has suggested that oxidative stress is significant in ME/CFS and has given us direction for a new study in 2021 on its extent in ME/CFS and whether it can be alleviated by the powerful antioxidants, CoQ10 and MitoQ.
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https://alumni.otago.ac.nz/donate/myalgic-encephalomyelitis
 
RoseE said:
The April 2020 issue of the New Zealand Doctor publication includes an in-depth 'How to Treat' clinical update article on Myalgic Encephalomyelitis /Chronic Fatigue Syndrome.
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M.E. Awareness NZ has announced that the team at NZ Doctor have given them permission to share the pdf for the article on their website. You don't need to scroll thru the flipbook anymore. Refer https://m.e.awareness.nz/how-to-treat-mecfs

Some commentary on this article is in posts above, starting at...
Hutan said:
This is a well-informed and sympathetic article in a publication that is likely to be widely read by NZ doctors. There's a lot that is good as well as a few points that are a bit less good.
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A NZer has reached out for advice on challenging their Insurance company's request that they use GET and CBT for a period.
Are there any threads here in s4me of how people have challenged that?
What evidence /research would this forum recommend is provided to argue that these treatments are not appropriate for people with ME/CFS ?
 
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Item from Radio NZ about a woman with fibromyalgia who was an employee at the Ministry of Social Development highlighting how Covid-19 changed the willingness of the ministry to allow working from home.
https://www.rnz.co.nz/news/national...-illness-calls-out-employer-s-double-standard
Abby said she wished she had the option to work from home like some of her colleagues did but resigned before the option to work from was offered to some MSD staff.

"Honestly it was just shattering. I was so angry and I felt so let down MSD saying there is nothing we can do and now it is clear, within a week Covid hit and our entire office was set up and working from home and they couldn't do it for one person."

Abby hopes her story encourages employers to improve their flexibility and options to work from home for people living with chronic illnesses.
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