News from Aotearoa/New Zealand and the Pacific Islands

SNT Gatchaman said:
YouTube - Post-Exertional Malaise in ME/CFS - Management and Supports - Webinar for Health Professionals (24 mins)
Dr Cathy Stephenson for ME Awareness NZ on World ME Day.

I think this is a good resource for GPs and other health professionals; but also patients and family members. Includes a good discussion of PEM, its symptomatic features, triggers and management; as well as 4 minutes of a patient's experience (a former health professional going from full health to severe).
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We've created a new thread in Resources for this excellent webinar which had input from @Ravn, and moved posts about it to that thread

Post-exertional Malaise in ME/CFS - Webinar for Health Professionals
 
don't know if this petition has been posted
Improve the Education of ME/CFS (chronic fatigue) within medical schools in NZ

How can you ask med schools to get it right when you keep calling it 'chronic fatigue'.

Similarly with a lot of the content eg

ME/CFS (Myalgic encephalomyelitis or chronic fatigue syndrome) is a chronic condition which lasts for longer than 6 months and leaves the individual with an multitude of potential symptoms; including but not limited to extreme fatigue, long lasting post exertional fatigue, the inability to be upright for long periods, unrefreshing sleep, and cognitive impairment. ME/CFS can effect anybody but is more common to arise within individuals with another chronic condition, major health complications as a trigger, are older in age, and/or simply because an individual is female.
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https://www.change.org/p/improve-th...urce_location=petition_footer&grid_position=9
 
Sly Saint said:
don't know if this petition has been posted
Improve the Education of ME/CFS (chronic fatigue) within medical schools in NZ

How can you ask med schools to get it right when you keep calling it 'chronic fatigue'.

Similarly with a lot of the content eg



https://www.change.org/p/improve-th...urce_location=petition_footer&grid_position=9
Click to expand...
My third-hand information is that this is the project of an individual who decided off their own bat they wanted to raise awareness about the medical education problem. I have a dim memory that somebody was going to contact them about amending some of the more unfortunately phrased parts but I'm not sure if that's happened or if it's even possible to make changes after posting a petition on Change.org, especially after people have already signed. Maybe adding an update could help clarify some of the issues, including who the petition is going to be presented to. The problem the petition is trying to address is very real
 
The EU and New Zealand sign an agreement for the participation of New Zealand in European programmes like Horizon Europe

The European Union and New Zealand have today signed an agreement for the participation of New Zealand in EU Programmes. The agreement creates a long-lasting legal framework that regulates the terms and conditions for New Zealand’s participation in European programmes, including its involvement in the governance structures and its financial contribution. The agreement opens the doors to New Zealand’s participation in the framework programme for research and innovation Horizon Europe (2021-2027).

Diana Morant Ripoll, Spanish Minister for Science and Innovation

New Zealand and the European Union have a long history of cooperation in the field of research. With this agreement we want to make a step forward to support our research and innovation communities and our respective economic sectors, but also to contribute to science progress in areas that matter to the whole planet.
Diana Morant Ripoll, Spanish Minister for Science and Innovation

New Zealand and the EU will cooperate in research projects related to climate change and carbon-neutrality but also in other areas such as big data, precision agriculture, sustainable energy, earthquake research and industrial innovation.

The agreement is expected to boost bilateral cooperation in research and innovation. The EU is New Zealand’s most significant regional science and innovation partner, with more than half of New Zealand’s researchers regularly engaged in active collaborations with EU partners. Around 4 000 businesses in New Zealand perform research and development activities, with many more engaging in innovation. New Zealand has 8 Universities, 7 Crown Research Institutes, and several independent research organisations.

More at: https://www.consilium.europa.eu/en/...d-in-european-programmes-like-horizon-europe/

Relevance of Horizon to ME/CFS - https://www.s4me.info/threads/eu-news-from-the-european-me-coalition-emec.21253/#post-458576
 
Congrats to New Zealand!

On a side note, we have been basically kicked out of these research funds recently (because in the case of most universities, how they were run financially has been restructured and not in a good way). Not that anyone was doing serious biomedical research into ME/CFS here, so in that particular respect it is not really a lost opportunity to lose those research funds.

Good for NZ though!
 
From a member of M.E. Awareness NZ...
Upcoming interview on Long Covid tomorrow (Saturday, 21st July 2023) - Danny Altmann is speaking with Kim Hill on RNZ. At 9:05 am Saturday.
Altmann is a leading immunologist and co-wrote the Long Covid handbook with Gez Medinger. He will likely also talk about the overlap with ME and other post-viral conditions.
(his recent research review includes commentary on ME - and the conclusion is esp powerful, on the huge impact of these conditions:
https://www.nature.com/articles/s41577-023-00904-7 )

If you are able and want to, pls listen live and text in your Qs and comments - free text to 2101
(and it's ideal to text during the show, in the first half)

Here's the link to the show, will be updated with the details for this week later on Friday
https://www.rnz.co.nz/national/programmes/saturday
 
RoseE said:
Upcoming interview on Long Covid tomorrow (Saturday, 21st July 2023) - Danny Altmann is speaking with Kim Hill on RNZ. At 9:05 am Saturday.
Altmann is a leading immunologist and co-wrote the Long Covid handbook with Gez Medinger. He will likely also talk about the overlap with ME and other post-viral conditions.
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I thought Altmann was good. He came across as credible and measured, and I think he helped the causes of Long Covid, and ME/CFS.

He didn't answer a question about post-exertional malaise well. He explained it was different from just tiredness after exertion, that young people who were very previously active can now do some activity and then be wiped out for the weekend. He said that people don't appreciate the scale of the impact, but didn't give a sense of what it is like to have post-exertional malaise. He suggested that PEM might be due to impaired gas exchange across the lungs. That, and an earlier emphasis on the symptoms of coughing and breathlessness painted a particular picture of Long Covid that I think is only part of the story.

In response to a question about whether other viruses could have been doing this too, and it's just that people weren't paying attention to those, Altmann replied very briefly that 'no', Covid -19 is unusual, it is particularly nasty. The impact of that was to implicitly imply that Long Covid is a unique thing. He did pull things back a bit later, talking about ME/CFS, and that 'symptoms massively overlap' and that fact that ME/CFS research wasn't funded. He also talked about SARS-CoV-1, noting that the symptoms were almost the same, and how the people affected with post-viral impacts from that pathogen had remained significantly affected, unable to return to their previous jobs.

He gave good answers about treatments (there are none that it is worth risking taking right now, but people are working on things, and there are tools in the immunology toolbox that may be useful).

I don't think there was anything said that we here don't already know e.g. severity of infection doesn't really relate to Long Covid incidence - plenty of people with a mild infection end up with LC. You can get LC on a re-infection, but previous infections or vaccinations seem to lower risk.

A listener texted in 'I feel like collateral damage'. Altmann commented that he feels outrage for people with LC.

The interview closed with a comment about how Gez Medinger is doing. Altmann noted that previously Gez had been a dedicated marathon runner, and now, when he is doing publicity events for the Long Covid Handbook etc, he will take breaks to sit somewhere quiet in order to get through it. Altmann suggests that Kim, the presenter, should get him on the programme.

So, yes, helpful and pretty accurate. I think there is scope for conveying the potential seriousness of the condition at the individual level a bit better, but perhaps interviews with people with LC and their carers can do that. One brief interview can't cover everything. I don't think the consequences of the condition at the societal level were rammed home either, but again, I think that might be something that needs to come from layers of interviews. The foundations were laid. Possibly people will take away from the interview 'oh well, the researchers are on it, and it sounds as though treatments aren't far away'. And that might be true, I hope so.

Here's a link to the page for the morning's programme:
https://www.rnz.co.nz/national/programmes/saturday
The link to the interview isn't up yet.
 
Agree @Hutan, I thought it was a good foundation. Yes, I also wished the PEM question had been addressed more comprehensively, regarding wide-ranging symptom exacerbation not just fatigue - albeit much more severe than its healthy equivalent.

It was "good" to hear the experience from Toronto SARS1 as there has been too much dancing around LC not being ME. That has been both unhelpful and helpful (the latter in terms of biomedical research into this 'totally new disease'). Eg the local FB support group frequently has newer people inquiring whether anyone else has these "weird symptoms" (typical core ME). Much resistance to the idea that LC is (largely) ME and it's unpleasant to see the shocked, horrified reactions of people finally realising that that's what this is - including a formal diagnosis - and that this quite possibly won't go away in a few months - or indeed ever.
 
'Gold standard to test for viruses lurking in the body is with a gut biopsy'. Is that true? We have heard for decades the debate on ME onset and viruses. I can't remember any if the doctors interested in the Herpes family and ME talking about this or autopsies of people with ME. Does it sound familiar to anyone?
 
Sly Saint said:
About the event Rest Assured Respite Trust
Dr Ros Vallings - speaking on ME/CFS diagnosis, management, current research
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Rest Assured Respite Trust

Sat Aug 05 2023 at 01:00 pm
(GMT+12:00)

Mt Eden Village Centre, 449 Mt Eden Rd, Mt Eden,Auckland, New Zealand, Auckland, New Zealand
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Looks like it's an in person event, not online.
 
Ravn said:
A LC registry is being set up. Seems to be limited to documenting impact of illness and lived experience rather than function as a platform to facilitate biomedical research at this stage (but a good initiative that could be built on, funding permitting - it's more than what we have for ME).
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Just stumbled across the registry website:
https://www.lcregistry.auckland.ac.nz/

As per the original reporting, the immediate study outcomes are all about the impact LC has on people's QoL. However, it looks like they're hoping the registry will be used by other researchers to look into treatment effects as well :emoji_fingers_crossed:
participant info said:
What is the purpose of the study?

Studies show that around 10–20% of people infected by COVID-19 may go on to develop long COVID. This means there may be some 200,000 individuals impacted by long COVID in Aotearoa New Zealand. With this research we will establish a long COVID registry. We hope this will help us to understand
  • the burden of long COVID on patients, including learning more about symptoms,
  • the impact of long COVID on quality of life,
  • the different pathways and possible complications to receiving diagnosis and treatment,
  • the impact of long COVID on work and caregiving,
  • the cost of long COVID on individuals and our wider society,
  • the distribution of this burden, and
  • whether the impacts improve or worsen over time.
[...]Who can take part?

We are aiming to initially recruit 3,000 New Zealand adults (aged 18+) with self-reported long COVID.

[...] What are the benefits of taking part?

Analysis of the registry data could be used to help identify gaps in health and social services support. The information can be used to make a case for funding important services and/or implementing policies that would help people suffering from long COVID.

[...] How will my data be used in future research?

Studies seeking to understand or treat long COVID may wish to recruit participants through the long COVID registry. Researchers would need to submit a request to the research team for the characteristics/background/demographics of individuals they want, along with the details of their study. Te Rōpū Kaitiaki (our advisory group) will review these requests to ensure they align with the aims of the registry and are mana enhancing. Professor Paula Lorgelly and the research team will identify those individuals who meet the criteria of interest, confirm the individuals have consented to being contacted for other studies (that are not related to this registry study of burden) and the registry research team will contact those participants to tell them about the study. No registry data will be released without participants’ consent.

[...] What are the benefits of using my data in future research?

Your data could help researchers to understand who is impacted but long COVID and why. It could also help researchers to understand if there are different types of long COVID and allow them to investigate which treatments might work and for whom.
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‘A shell of my former self’: Broadcast journalist Joy Reid’s battle with long Covid

“I started developing headaches and really struggled with simple tasks including concentration and memory.”

Initially Reid thought it was a form of burnout, but was soon diagnosed with long Covid.
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The experience had at times felt very lonely and been hard on her mental health, Reid said.

Having a supportive husband and children kept her going.

Geoffrey was “extraordinarily empathetic and understanding” having experienced chronic fatigue syndrome seven years ago.

He was bedridden for more than four months and struggled for another year before he could function at 80-90%, Reid said. It took almost three years to make a full recovery.
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