News from Aotearoa/New Zealand and the Pacific Islands

Here's a direct link to the radio piece. It's good - the angle is that people are thinking that Long Covid is essentially the same as ME/CFS, and Warren's lab is working to see if they can find the same epigenetic markers and proteins in a handful of Long Covid people as they found in some ME/CFS people last year. Clare Concannon is the journalist involved. Nice to hear from Anna Blair who is in Warren's lab and has ME/CFS.

https://www.rnz.co.nz/national/prog...9782/our-changing-world-me-cfs-and-long-covid
 
don't know if this has been posted
Myalgic encephalomyelitis/chronic fatigue syndrome
Website_Event_Icon_CME.JPG

Ensuring a patient-centred approach to care for people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
On completion of this education activity participants will be able to:

  • Evaluate and reconsider management of ME/CFS, based on the latest developments in our understanding of ME/CFS pathophysiology.
  • Identify exclusionary conditions, mimics and false diagnoses, to aid in the accurate diagnosis of ME/CFS.
  • Plan strategies for managing non-core symptoms of ME/CFS including gastrointestinal symptoms and neurological symptoms, and for managing specific populations with ME/CFS (i.e. the severely unwell, young patients and those undergoing surgery).\
  • Formulate a patient-centred treatment plan that accommodates the patient with ME/CFS in general practice.
  • Coordinate a multidisciplinary team approach, as appropriate, to optimise outcomes in patients with ME/CFS.
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on 21/06/2021
https://www.rnzcgp.org.nz/GPStaff/i...bsiteKey=d683b483-45d7-4e48-9daa-1a916120ba9c

links to:
https://www.thinkgp.com.au/education/mecfs-part-2

Ensuring a patient-centred approach to care for people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
This is the second module in a two-part series on ME/CFS. It is recommended that you complete Busting the myths and redefining myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) before commencing this module.


Providing care for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) requires a patient-centred approach with a focus on quality of life and incorporating the multidisciplinary team. This second module on ME/CFS provides detail on making a differential diagnosis, the non-core symptoms of ME/CFS, management in specific populations, and the development of a patient-centred treatment plan
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RoseE said:
Another longer item (31 minutes) from Clare Concannon, Radio NZ, Our Changing World, about ME/CFS and Prof Tate's research & team.
https://www.rnz.co.nz/national/prog...018799656/when-disease-research-gets-personal
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Nicely done programme. No breaking news or anything but I'm looking forward to the day when media representations of ME reach this level of accuracy and sensitivity as a matter of course (though RNZ in general is comparatively good on that count).

Give it some traffic, podcast ratings, reviews, whatever, to show appreciation. The interviewer/producer is quite new to the job on that show. Want to encourage her (and RNZ) to do more good work on ME in the future.
 
New ten minute interview with Dr Ros Vallings on CFS and risks of covid vaccine. Includes introduction to CFS.
https://www.rnz.co.nz/national/prog...nic-fatigue-syndrome-and-the-covid-19-vaccine
Last night Lately received a number of questions from listeners asking about the Covid-19 vaccine as they are experiencing Chronic Fatigue Syndrome. To answer their questions tonight Karyn speaks with Dr Ros Vallings who is a leading authority on chronic fatigue syndrome in New Zealand.[\quote]
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The Science Media Centre (NZ) has published an expert reaction article (6th july) about Andreas Goebel et al study 'Passive transfer of fibromyalgia symptoms from patients to mice'.
https://www.sciencemediacentre.co.n...may-not-be-only-in-the-brain-expert-reaction/

Discussion in S4ME on the study here

ex SMC NZ...
A study in mice shows that fibromyalgia – a poorly understood condition which causes ongoing pain and fatigue in an estimated 1 in 40 people worldwide – could be caused by the immune system turning up the dial on pain-sensing nerves.
Healthy mice injected with the antibodies of fibromyalgia patients showed symptoms of the disorder, which cleared up once the antibodies were removed. The study author says it could also offer an explanation for long COVID.

The SMC asked experts to comment on the study....
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Prof Tate was one of the 3 experts making comment. And all three mention Long Covid or ME/CFS in their response.
 
RoseE said:
The Science Media Centre (NZ) has published an expert reaction article (6th july) about Andreas Goebel et al study 'Passive transfer of fibromyalgia symptoms from patients to mice'.
https://www.sciencemediacentre.co.n...may-not-be-only-in-the-brain-expert-reaction/

Discussion in S4ME on the study here

ex SMC NZ...


Prof Tate was one of the 3 experts making comment. And all three mention Long Covid or ME/CFS in their response.
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Because this is outside of my basic understanding of biology: do we know how to reliably clear antibodies? How do they do that and is that something that can be standardized as a treatment? Or would it have to be personalized for every individual depending on which antibodies are found? With the caveat that they probably fluctuate and are hard to find unless you know what you're looking for.

Related question: why wouldn't those antibodies be cleared? Do they naturally die or do they have to be cleared by an active process?
 
rvallee said:
Related question: why wouldn't those antibodies be cleared? Do they naturally die or do they have to be cleared by an active process?
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The half life of most IgGs is between 7-21 days depending on subtype. While in principle, they can be excreted, most are broken down after being internalised by cells, for example pinocytosis by endothelial cells or receptor mediated internalisation. They can also be degraded by extracellular proteases, and this will increase the likelihood of endocytosis into cells.
 
Sly Saint said:
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) - a complex disease that has come of age with the SARS-CoV-2 pandemic

Seminar presented by Emeritus Professor Warren P Tate FRSNZ CNZM (Department of Biochemistry)

Thursday, 29 July 2021
Zoom details (free):
https://www.otago.ac.nz/news/events/otago830543.html
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A recording is now available:
https://echo360.net.au/media/4fdfc7ac-e5d3-4e05-a1df-9241450ef343/public

This was the description on the original webpage (see quote above):
Ideas that ME/CFS was simply a somatic perception disorder had been promoted by a prominent British psychiatrist, Sir Simon Wesseley, who believed patients perceived their symptoms and their disability and when attempting to do things perceived them as too difficult. This dominated thinking about the disease for over 20 years. Key recent international trends followed an extensive 2015 report from the Academy of Medicine) of the National Academy of Sciences, USA concluding that that ME/CFS is a serious disease that deserves much more medical attention and social support and is not a psychiatric illness.

The National Institute for Health and Care Excellence (UK) have drafted extensive guidelines (2020) consistent with this latest thinking on ME/CFS. My research group has been actively researching the biological basis of ME/CFS together with an international expert clinician, Dr Rosamund Vallings, of the Howick Health and Medical Centre.

The research approach has been to study molecular changes in immune cells by precision medicine. From studies of multiple classes of molecules many differences in physiology between ME/CFS patients and healthy age/gender matched controls, have been deduced; there are dysfunctions in the autonomic nervous system, immune regulation, inflammation, energy production, and a lowered general metabolism.

Molecular signatures of ME/CFS have been deduced in the energy producing machinery of cells, and in the DNA epigenetic code that controls the expression of all our information stored in genes could directly explain some of the functional deficits in brain function. Now with post-Covid viral fatigue syndrome arising in 10% of those infected with SARS-CoV-2 (up to 20 million worldwide) the interest in ME/CFS has skyrocketed.

We are researching whether Long COVID is indeed the same illness and likely to be lifelong like ME/CFS. Anna Blair, who is part of Warren’s patient study group and works part time in his lab at the Department of Biochemistry, will also be contributing to the seminar.
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Campbell Murdoch, retired GP, is presenting at GPCME South (General Practice Conference and Medical Exhibition) in Christchurch on August 22nd. 12 noon. 20 minutes.
http://www.gpcme.co.nz/south/index.php

Dr Murdoch was a leading advocate for pwME during the 1980s here in NZ, during the 'Tapanui Flu' period.
He wrote a book 'Chronic Fatigue Syndrome a Patient-centered Approach' in 2002.
Amazon product ASIN 1857759079
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Cathy Stephenson GP, is presenting at the RNZCGP GP21 conference on Saturday, 7th August, 11:40 am. Wellington, "From harm to help - promoting an evidence based shift in our understanding of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (30 mins)" - Concurrent 3e session.
Dr Stephenson will be talking about her experience exploring the latest guidance and developing an article for NZ Doctor in 2020 on the topic.
https://www.generalpractice.org.nz/programme

Cathy Stephenson’s presentation has been posted in Resources for health professionals, From harm to help.

M.E. Awareness NZ will be present at the conference at Exhibitors Stand 5. Thanks to the funding raised in December 2019 by Richard Medlicott GP when he participated in The Pioneer mountain bike race.
 
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The Royal New Zealand College of General Practitioners (RNZCGP) General Practice Conference in Wellington started today, and the M.E. Awareness NZ stand is looking great.
Lot's of conversations and useful connections being made.

We have curated a great range of resources, including a reprint of the New Zealand Doctor article How to Treat: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

We are grateful to be here at GP21 - and it's thanks to the 'Doc Pioneers for M.E.' fundraising campaign in December 2019. Thanks to GP Richard Medlicott for riding The Pioneer for us, and to the generous donors.
 

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MECFS Canterbury has coordinated a series of events in Christchurch for Dr Lynette Hodges from Massey University later this month.
Full Details on https://www.healthychristchurch.org...ions-on-exercise-and-chronic-fatigue-syndrome

Exercise Physiologist Dr Lynette Hodges is presenting in Christchurch in August on her leading international research into the abnormal physiological response to exercise in Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS).

These are opportunities to get up to date with research findings about why people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome have difficulty in completing exercise programmes and activities of daily living.

Webinar for allied health professionals
This webinar is organised by the Canterbury Initiative (Canterbury DHB) to support the recent updates to guidance for ME/CFS on Allied Healthways and Health Pathways.
Date: Monday 23rd August 2021.
Time: 6.30 to 7.30pm.
Location: Online via Zoom.

Register online to attend this webinar for allied health professionals.

A recording of this session will be made available on Allied Healthways.

Topics include:
  • An overview of the latest research on exercise and physical activity for patients with ME/ CFS;
  • Determining the relationship between physical activity and symptoms, including an overview of Cardiopulmonary Exercise Testing; and
  • Exercise and physical activity in the management of ME/ CFS.
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Seminar for health professionals and people with ME/ CFS and their whānau
This seminar is hosted by MECFS Canterbury - everyone welcome.
Date: Wednesday 25th August 2021.
Time: 2.30 to 3.30pm. Afternoon tea to follow presentation.
Location: Mary Potter Community Centre (442 Durham Street North). Parking available on-site.

Find out more about this presentation on exercise and ME/ CFS (Facebook).

A recording of the presentation will be shared after the event.
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Research seminar for health, medical and research professionals
Within the University of Otago, Christchurch campus, Research Seminar Series
A recording of the presentation will available on the University of Otago website after the event ( https://www.otago.ac.nz/uoc-research-seminar ).
Date: Thursday 26th August 2021.
Time: 11am to noon.
Location: Beaven Lecture Theatre (University of Otago at Christchurch Hospital campus) or online via Zoom.

Find out more about this presentation for health professionals and researchers (Facebook).
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Grand Rounds, Christchurch Hospital
Dr Hodges has also been invited to present to Hospital Physicians and medical students.

About presenter Dr Lynette Hodges
Dr Lynette Hodges (PhD, MSc, BSc) is a senior lecturer at Massey University within the School of Sport, Exercise and Nutrition in Palmerston North.

She teaches on the Bachelor of Sport and Exercise - Exercise Prescription major. Her main focus is exercise and compromised health. Dr Hodges has specialized in investigating the effects of exercise and its impact on mobility in individuals with spinal cord injuries, multiple sclerosis and myalgic encephalomyelitis/ chronic fatigue syndrome. Dr Hodges has been researching into the effects of exercise on ME/ CFS for the last 6 years and has a number of publications within this area.
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RoseE said:
Research seminar for health, medical and research professionals
Within the University of Otago, Christchurch campus, Research Seminar Series
A recording of the presentation will available on the University of Otago website after the event ( https://www.otago.ac.nz/uoc-research-seminar ).
Click to expand...

RECORDING NOW AVAILABLE:
The recording of Dr Lynette Hodges' recent presentation in the Research Seminar Series for University of Otago, Christchurch campus, has been shared.
Dr Hodges, an Exercise Physiologist and senior lecturer at Massey University, spoke about her research into the abnormal physiological response to exercise in ME/CFS on 26th August.

Key messages included;
• It is important to validate patient's symptoms
• Graded exercise therapy has risks and can worsen symptoms for those with ME/CFS
• Post-exertional malaise (feeling ill and increase in symptoms after exertion) needs to be avoided where possible
• Patients need to monitor their symptoms. There may be no room for any additional exercise activity over basic daily activities.
• Heart rate monitoring, activity diary, activity trackers are useful.

TO WATCH:
✦ The video is available on www.otago.ac.nz/uoc-research-seminar The presentation has the title 'The abnormal physiological response to exercise in people with ME/CFS' and is dated 26th August.
✦ Direct link to video https://echo360.net.au/media/86177f...toplay=false&automute=false&startTimeMillis=0

BIO:
Dr Lynette Hodges (PhD, MSc, BSc) is a senior lecturer at Massey University within the School of Sport, Exercise and Nutrition in Palmerston North.
She teaches on the Bachelor of Sport and Exercise, Exercise Prescription major. Her main focus is exercise and compromised health. Dr Hodges has specialized in investigating the effects of exercise and its impact on mobility in individuals with spinal cord injuries, multiple sclerosis and myalgic encephalomyelitis/chronic fatigue syndrome. Dr Hodges has been researching into the effects of exercise on ME/CFS for the last 6 years and has a number of publications within this area.

CAN YOU MAKE A DONATION?
To make a donation to Dr Hodges to suppport further research visit https://foundation.massey.ac.nz/donate-online
 
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