News from Aotearoa/New Zealand and the Pacific Islands

Recording: A Neuroinflammatory Model for ME/CFS (a hypothesis) - Dr Angus Mackay



Dr Angus Mackay talks with us about his theory that neuroinflammation is the cause of ME/CFS (and Long Covid related post-viral fatigue syndrome).
Presentation for MECFS Canterbury, 14th February 2024.

Angus hopes that as brain imaging techniques develop, the model will be used by researchers to explore and develop a better understanding of this debilitating disease.

The model revolves around a dysfunctional and inflamed hypothalamus, the master gland within the brain, and the stress-response centre within it, called the paraventricular nucleus (PVN), that responds to all significant stressors including viral and other shocks.
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Angus is keen to hear from people about whether this model resonates with them. Does it align with your experience of ME/CFS? He invites you to email him to discuss: angus1mackay@hotmail.com
 
Long Covid webinar. Hosted by the Helen Clark foundation (former NZ prime minister). Good speakers
Doesn't say if it will be available for later viewing but previous webinars have appeared on Youtube afterwards
Long Covid – are we taking it seriously enough? A webinar in which experts discuss long Covid: what is it, who is affected, and what could we be doing better?
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03 April 2024 12PM-1:15 PM

Webinar | Public
This is a public webinar. You can register here.

Long Covid affects as many as 150,000 people in New Zealand. Shockingly, they report a quality of life similar to that of patients with severe cancer or severe MS.

As the public focus on Covid-19 has waned and the public has largely returned to ‘normal’, many patients and health experts worry that the debilitating burden of long Covid is going unacknowledged. Public efforts to reduce transmission have largely stalled, yet each new case of long Covid has a profound and potentially life-long impact on patients and their whānau, as well as on our wider health and economic system.

In this webinar our expert panel will help us explore several important questions:
  • More than four years since Covid-19 made itself known, what do we know about long Covid and how to treat it?
  • How does the condition impact New Zealanders and their quality of life? Do we know the size of the problem, and who is most affected?
  • Are patients getting the support they need?
  • What policy and public health interventions are needed to reduce the risks of more people developing long Covid, and to help support those who have it already?
  • Where do we go from here? Is the government taking this seriously?
Our panel of experts includes:

Michael Baker – Professor of Public Health, University of Otago. Michael was a leading architect and advocate for the Covid-19 elimination strategy, and a member of the Ministry of Health’s Covid-19 Technical Advisory Group. He established a programme of research on the epidemiology, prevention and control of Covid-19 (Co-Search), which has generated a large amount of published research and commentary on the illness, and he continues to be a vocal advocate for public health policy approaches to reduce transmission.

Paula Lorgelly – Professor of Health Economics and Population Health at Auckland University. Paula is lead investigator in the establishment of a registry of long Covid patients that aims to paint an accurate picture of the burden of the condition.

Jenene Crossan – Patient advocate with Long Covid Support Aotearoa. As one of the first people to contract Covid-19 in New Zealand, Jenene has been a vocal advocate for long Covid patients. She has been working with Paula to help establish the Long Covid registry.

Warren Tate – Emeritus Professor of Biochemistry, Otago University. Warren has been researching the pathophysiology and treatment of ME/CFS for decades. Since 2021 his research has focused on both conditions – particularly the similarities between them. Warren trains clinicians on treating ME/CFS and long Covid, and has been a strong advocate for patient needs and policy changes.
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https://helenclark.foundation/event/webinar-long-covid/
 
There was an interview with epidemiologist Michael Baker on First Up on Radio NZ this morning. Michael Baker has been a reliably good commentator throughout the pandemic. He and a number of others have authored an article on the impact of Long Covid that will be available today - it sounds to be very helpful. The conclusion is that society should be very concerned, that the impact is disabling and action should be taken to reduce the risk.

A new study is out today, with significant findings on the effects that Long Covid is having on people. Epidemiologist at the University of Otago Michael Baker has been part of the study and he spoke with Nathan Rarere.
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Link here - https://www.rnz.co.nz/national/prog...dy-highlights-long-term-effects-of-long-covid

Edit - it's getting good coverage at each hourly news bulletin

And here's the link to the forum thread on the review:Long Covid in Aotearoa NZ: Risk assessment and preventive action urgently needed, 2024, Kvalsvig et al
 
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Generally very good. However... Warren Tate again promoted brain retraining as (paraphrasing from memory): "something that some patients report helps with incremental improvements over time". This was pushed back strongly by co-panellist Jenene Crossan following opportunity from an audience question on how to prevent GPs from recommending/"prescribing" the LP. The audience member described their daughter having pushed through (ME) via the LP which led to a devastating deterioration to very severe and fully dependent for the last five years — yet not classed as disabled...

Also in open chat, the comment was made that (paraphrasing from memory) "many Australian patients are being diagnosed with FND and being referred for psychological counselling, ignoring POTS/dysautonomia, endothelial dysfunction etc"

Also in open Q&A, from the only person listed as "Anonymous attendee" and referring to the recent PHCC LC Briefing —

"I was sursprised that the report the other day did not report two papers on interventions that have shown some benefit e.g. Kutt [sic] 2023 on CBT (where patients with depression were removed so not working on depression0 [sic] and Pouliopoulu [sic] 2023 in Jama network on rehabilitation. The absence makes it seem very therapeutically nihilistic. As warren says there is a disregulared [sic] sympathetic nervious [sic] system that needs calming."

I would happily wager $50 that that was Arroll.
 
SNT Gatchaman said:
I would happily wager $50 that that was Arroll.
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Ha. If so, I hope he saw my comment in the chat that Arroll is a major contributor to the RNZCGP's promotion of faith healing equivalents. Probably he'd take it as a compliment.

Yes, Warren is so helpful in so many ways, but I think he is still getting some things significantly wrong. There was quite a lot of comments in the chat about calming the sympathetic nervous system, meditation.
 
Ministry of Health statement (2/4/24) Clarification: Long COVID Expert Group completed its work in 2022

Information about the Long COVID Expert Group was last week provided by the Ministry to the Minister of Health and the Minister of Finance. The information provided was effectively incorrect in that it did not specify this group had since been disestablished.

The Ministry says as a result, incorrect information subsequently ended up in the public domain which the Ministry of Health is now clarifying.
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The expert group finished its work in 2022 and the Ministry of Health continues to actively review any new developments and provide information to the sector.
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The Ministry of Health has updated the information on long COVID on its website.

The Ministry of Health has apologised to both the Minister of Finance and the Minister of Health for what happened.
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SNT Gatchaman said:
I will have a chat to Mark.
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Briefly — is aware of the PACE trial, but doesn't think there is anything he/their team could add at this time. He noted The Lancet has refused to retract proven fraudulent studies and not likely to change their stance on PACE.

I think some here might have commented previously that 13 years later it's probably better to leave it unretracted anyway: a bit of a millstone that's only going to get heavier with time.

I will also forward our Cochrane documentation separately.
 
Hutan said:
Item on Radio NZ this morning about Long Covid and ME/CFS - Mona Jeffreys and Jenene Crossan - currently on.
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https://www.rnz.co.nz/national/programmes/saturday/audio/2018935087/the-burden-of-long-covid
Evidence indicates long covid presents a considerable burden to New Zealand.

Between 4 and 14 percent of people infected with covid will develop ongoing symptoms, anything from mild to severe.

Scientists who conducted a recent evidence summary of long covid in Aotearoa are convinced its prevalence is likely to increase and preventative action is needed.

Covid can change your DNA and your immune system and there is no cure for long covid.

Susie is joined by Jenene Crossan, founder of Long Covid Support Aotearoa and co-founder of the University of Auckland Long Covid Registry. Also Mona Jeffreys, epidemiologist and Associate Professor at Te Herenga Waka Victoria University of Wellington, who advises on the Long Covid Registry.
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45 minutes listen. I didn't hear it all, but what I did hear was sensible and good to have publicised. Nothing new for most members here - the conversation was based on the recent Long Covid in Aotearoa report.
 
The Press: Long Covid: ‘I don’t want to be stuck in this house anymore’
Some studies show around 10% of people who are infected with Covid-19 could go on to develop Long Covid. That would equate to roughly 66,000 people in the South Island.

There are no specialist physicians, only two Long Covid nurses, and one South Island based charity - MECFS Canterbury - that supports sufferers, but was set up to help those with Myalgic Encephalomyelitis Chronic Fatigue Syndrome. It receives no Government funding, has five part-time employees and survives on donations.

Many South Islanders with Long Covid are well aware of this. They cannot get support, they have been turned down for funding and some have nearly given up.
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The organisation has given him letters to take to his GP to help access a new drug, helped him fill out WINZ forms to access allowances and provided home visits from a nurse. They also got him a Total Mobility Card, for taxi journeys.

But getting so much support from a group originally dedicated to Chronic Fatigue Syndrome, has made him feel like a burden.

“It’s rough, you don’t want to weigh them [MECFS] down because they need as much support as they can get and we need as much support as we can get - we’re in the same boat trying to paddle,” he said.

“Something needed to continue after the Long Covid clinic shut, because from what I can tell there's not a lot going on.”

Many Long Covid patients across New Zealand are being denied disability funding because Long Covid itself isn’t considered a disability.
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