Anzmes

Anzmes would like to wish everyone a very Merry Christmas and a happy new year!

The CDC defines post exertional malaise (PEM) as:

"Worsening of ME/CFS symptoms after physical or mental activity that would not have caused a problem before illness.

People with ME/CFS often describe this experience as a “crash,” “relapse,” or “collapse.”

During PEM, any ME/CFS symptoms may get worse or first appear, including difficulty thinking, problems sleeping, sore throat, headaches, feeling dizzy, or severe tiredness.

It may take days, weeks, or longer to recover from a crash.

Sometimes patients may be house-bound or even completely bed-bound during crashes.

People with ME/CFS may not be able to predict what will cause a crash or how long it will last. As examples:

-Attending a child’s school event may leave someone house-bound for a couple of days and not able to do needed tasks, like laundry.

-Shopping at the grocery store may cause a physical crash that requires a nap in the car before driving home or a call for a ride home.

-Taking a shower may leave someone with ME/CFS bed-bound and unable to do anything for days.

-Keeping up with work may lead to spending evenings and weekends recovering from the effort."

We've gathered some research publications on Post Exertional Malaise

1) Focus on post exertional malaise when approaching ME/CFS in specialist healthcare improves satisfaction and reduces deterioration

bit.ly/41i7Yce

2) The Relationship between Physical Activity and long COVID: A Cross Sectional Study

bit.ly/3Njbw8b

3) Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire

bit.ly/41i7Yce

For detailed information on PEM, check out BHC's YouTube Video Series presented by Dr. Brayden Yellman & Dr. Lucinda Bateman:
https://bit.ly/3qnYTAl

Access Matters Aotearoa has posted a petition online asking for the withdrawal of the current Accessibility for New Zealanders Bill, and for a new bill to be drafted that includes minimum standards, a regulator and an enforcement mechanism.

The aim is for the petition to get the call for improved accessibility legislation in front of a cross-party Parliamentary Committee, and to gain the attention of all our politicians.

Find out more and sign the Petition for drafting a new Accessibility for New Zealanders Bill.

Sign the Petition Petition for drafting a new Accessibility for New Zealanders Bill

Prof Tate and colleagues new research article published today.
https://link.springer.com/article/10.1038/s41598-023-49402-9?

A pilot study on the immune cell proteome of long COVID patients shows changes to physiological pathways similar to those in myalgic encephalomyelitis/chronic fatigue syndrome - Scientific Reports Of those infected with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), ~ 10% develop the chronic post-viral debilitating condition, long COVID (LC). Although LC is a heterogeneous condition, about half of cases have typical post-viral fatigue with onset and symptoms that are very sim...

Biggest thanks to Emeritus Professor Tate for doing this interview for us. We appreciate you.
https://www.rnz.co.nz/national/programmes/saturday/audio/2018918841/unsupported-and-isolated-living-and-dying-with-me-cfs

Listen to Sean O'Neill speak about his daughter's life and death and the struggle with ME recognition and treatment. Truly heartbreaking.

https://www.rnz.co.nz/audio/player?audio_id=2018918841

Unsupported and isolated: living and dying with ME/CFS An inquest hearing in the UK has heard how 27 year old Maeve Boothby-O'Neill died from complications relating to ME, following years of inadequate care from the National Health Service. At least 25-thousand people live with ME (Myalgic Encephalomyelitis), also known as chronic fatigue syndrome in Ne...

Sometimes it hits me that I've been unwell for so long without a Doctor taking any notice at all.

My repeat prescription is up for renewal and it's made me realise I haven't seen a GP for M.E. related symptoms in years. Because what's the point? Not the best, safest, or most sensible viewpoint but people here will understand it.

When I have been seen and been taken seriously, any referrals have led to being discharged when I don't quite fit the bill.

In 2011 the CFS/ME clinic gave me all the information they could and sent me on my merry way under the illusion that full health would once again be mine. 13 years in, there's nothing new they could tell me at this point. Most of it is common sense anyway.

Haematology when my blood wasn't clotting? Discharged with my blood still not clotting...

Endocrinology when my adrenal issues were quite frankly ridiculous? Discharged issues still the same as they'd been when I was referred...

Neurology when I happened to get a new GP and mention my temporary paralysis? Discharged after I didn't fit the bill for Periodic Paralysis, but still experiencing temporary paralysis...

When I relapsed back into Severe M.E. I was rushed through for an emergency appointment for suspected Diabetes. The tests were negative, but the symptoms remained. Did anyone bother to check? No. I festered in bed in a dark room at home where my husband and Mum were the only medical or care team I had.

Something that has stayed with me though, was the wobble in the voice of one Neurologist during a phone appointment. There was genuine concern that, despite the severity of my symptoms and the devastating impact on every corner of my life, I didn't have a dedicated Doctor keeping even a casual eye on me.

Many others need frequent medical appointments. Their limited capacity is spent on appointments that may help with symptom management. I'm sure I could be seen more often, and I do go when absolutely desperate. But for the most part it is a complete waste of hope and time and energy in my particular case.

What a sorry state of affairs.

IMAGE: Anna in woodland print pjs on bed front step. Her face is out of shot.

Video 3 of 3 for the 43rd Annual General Meeting of Associated New Zealand Myalgic Encephalomyelitis Society Incorporated (ANZMES).

Video 1: AGM proceedings
Video 2: Farewell presentation to long standing executive committee member and past president - Heather Wilson
Video 3: Presentation by Dr. Sarah Dalziel - a summary the latest research presented at the November 2023 NCNED Griffith University conference.

AGM 2023 3 of 3 The 43rd Annual General Meeting of Associated New Zealand Myalgic Encephalomyelitis Society Incorporated (ANZMES).Video 3 of 3Video 1: AGM proceedingsVideo 2...

Video 2 of 3 for the 43rd Annual General Meeting of Associated New Zealand Myalgic Encephalomyelitis Society Incorporated (ANZMES).

Video 1: AGM proceedings
Video 2: Farewell presentation to long standing executive committee member and past president - Heather Wilson
Video 3: Presentation by Dr. Sarah Dalziel - a summary the latest research presented at the November 2023 NCNED Griffith University conference.

AGM 2023 2 of 3 The 43rd Annual General Meeting of Associated New Zealand Myalgic Encephalomyelitis Society Incorporated (ANZMES).Video 2 of 3Video 1: AGM proceedingsVideo 2...

Video 1 of 3 for the 43rd Annual General Meeting of Associated New Zealand Myalgic Encephalomyelitis Society Incorporated (ANZMES).

Video 1: AGM proceedings
Video 2: Farewell presentation to long standing executive committee member and past president - Heather Wilson
Video 3: Presentation by Dr. Sarah Dalziel - a summary the latest research presented at the November 2023 NCNED Griffith University conference.

AGM 2023 1 of 3 The 43rd Annual General Meeting of Associated New Zealand Myalgic Encephalomyelitis Society Incorporated (ANZMES).Video 1 of 3Video 1: AGM proceedingsVideo 2...

interviewed Dr. Asad Khan in Episode 5 of the Know M.E. podcast series. He speaks about this upcoming research. Now it's almost ready for publication. Here's a sneak peak with useful resources.

:
Exellent SA research to show your doctor.
‘Our latest ME/CFS manuscript is still under review, but the journal has uploaded it already as a preprint!

The manuscript extensively delves into the intricacies of ME/CFS, and assesses different facets of the condition; from exploring its pathomechanisms to evaluating treatment methodologies.

Resia Pretorius Asad Khan Beate Jaeger Douglas Kell Benjamin Marsh

ABSTRACT
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic disease with debilitating symptoms that impact all aspects of life. The diverse symptom presentation indicates that ME/CFS is likely to have a multifactorial origin.

However, it is an extremely understudied disease with no standardised diagnostic criteria or proven treatment avenues. It is hypothesised that environmental insults (such as acute infection, mainly viral) or stress in genetically susceptible individuals may trigger the development of ME/CFS.

These insults result in acute inflammatory responses, along with aberrant immune activation. A spiralling disruption of homeostasis promotes subsequent patho-mechanisms including gut dysbiosis and systemic inflammation, and eventually a pathological clotting system, chronic endothelialitis, vasoconstriction, and hypoxia.

Additionally, dysfunctional energy metabolism including oxidative stress is also present in the development of ME/CFS.

Since the exact pathophysiology of ME/CFS remains unclear, additional research is required to reveal further insight into this “neglected” disease.’

https://deliverypdf.ssrn.com/delivery.php?ID=664098073095003027076109031022097113048075014035075091072002118026039050105061104040013022076028063080011101107079006046007077127006040078011076095075109112109010068125076123086068068056029105032006010110019072040021080118122125114025122022026091120099082008024067008105093089015007119121067100&EXT=pdf

Anzmes is tomorrow, Saturday 18th November at 1pm. During the AGM, we will be farewelling long time committee member and past president, Heather Wilson. If you would like to share a few words about Heather's service to ANZMES and the MECFS community, please join us at the AGM and you'll be given the chance to share. If you can't make it, you are welcome to email your thoughts to [email protected] and they will be read out on the day. Thank you. We'd love to hear from you.

Anzmes AGM is coming up on Saturday, 18th November starting at 1pm.
Guest speaker is Dr Sarah Dalziel

Zoom link - https://us06web.zoom.us/j/83551071674?pwd=d2piQ1A4cFkvcklnbUJFU3MwL3Nwdz09

Meeting ID: 835 5107 1674
Passcode: 787146

During the AGM, we will be farewelling long time committee member and past president, Heather Wilson. If you would like to share a few words about Heather's service to ANZMES and the MECFS community, please join us at the AGM and you'll be given the chance to share. If you can't make it, you are welcome to email your thoughts to [email protected] and they will be read out on the day. Thank you. We'd love to hear from you.

A friendly reminder that the Anzmes AGM is this Saturday, 18th November starting at 1pm.

Anzmes AGM is coming up on Saturday, 18th November starting at 1pm.
Guest speaker is Dr Sarah Dalziel

Zoom link - https://us06web.zoom.us/j/83551071674?pwd=d2piQ1A4cFkvcklnbUJFU3MwL3Nwdz09

Meeting ID: 835 5107 1674
Passcode: 787146

During the AGM, we will be farewelling long time committee member and past president, Heather Wilson. If you would like to share a few words about Heather's service to ANZMES and the MECFS community, please join us at the AGM and you'll be given the chance to share. If you can't make it, you are welcome to email your thoughts to [email protected] and they will be read out on the day. Thank you. We'd love to hear from you.

ME Support - NZ are having their AGM & live talk (via Zoom) with Dr Karl Morten PhD on Saturday 11th November starting at 10.30am.

Use the following link prior to the event to register, and you will be sent a confirmation email with
the Zoom link: https://tinyurl.com/ME-Support-AGM-2023

October is ! The autonomic nervous system is how the brain sends nerve signals to all of the organs, telling the heart to beat, the blood vessels to constrict, the pupils to constrict, the glands to produce moisture, the GI tract to move food, the gallbladder and liver to produce gastric juices, and much more. Every organ in your body is regulated by the autonomic nervous system, so when you have a problem with your autonomic nervous system, it can impact any, and sometimes ALL of the organs in your body. This is why people with various autonomic nerve disorders can have a very long list of symptoms.

32 organizations call for future pandemic preparedness to address infection-associated chronic conditions.
Future pandemic preparedness will fail millions without explicit recognition of and research into infection associate chronic conditions.

https://worldmealliance.org/2023/10/31-organizations-call-for-future-pandemic-preparedness-to-address-infection-associated-chronic-conditions/

Dysautonomia, also known as autonomic dysfunction, is a group of disorders that affect the autonomic nervous system (ANS).

Common signs of dysautonomia include:

Tachycardia (fast heart rate)
Hypotension (low blood pressure)
Dizziness/lightheadedness
Gastrointestinal dysmotility (problems moving food through the digestive system)
Disturbed bladder function
Temperature and sweating dysregulation
Sleep problems

Dysautonomia is a term that is used to describe a number of different conditions that have an impact on the autonomic nervous symptom. It can come in many different forms, yet the key here is that the autonomic nervous system (ANS) is impacted. The ANS is imperative because it plays a number of key roles, including moderating the heart rate, keeping blood pressure steady, regulating breathing patterns, and maintaining a constant internal temperature. It is also involved in excretion, sexual arousal, and pupil dilation.

Fast Facts About Dysautonomia -

- There is no single treatment that can address all Dysautonomias.

- The most common sort of Dysautonomias is neurocardiogenic syncope, which results in fainting. Millions of people around the world are impacted by this.

- Primary Dysautonomia tends to be due to a degenerative disease or it is inherited.

- Secondary Dysautonomias typically happen because of another injury or condition.

- There are approximately 15 different types of Dysautonomia.

Returning to functional activities and exercise after COVID-19 – Flow Chart.

Physiotherapy New Zealand has provided ANZMES with a flow chart for the return to exercise advice in the Long COVID space.
Please find attached the flow chart designed for health care professionals to be supported in giving safe exercise advice.

Anzmes AGM is coming up on Saturday, 18th November starting at 1pm.
Guest speaker is Dr Sarah Dalziel

Zoom link - https://us06web.zoom.us/j/83551071674?pwd=d2piQ1A4cFkvcklnbUJFU3MwL3Nwdz09

Meeting ID: 835 5107 1674
Passcode: 787146

During the AGM, we will be farewelling long time committee member and past president, Heather Wilson. If you would like to share a few words about Heather's service to ANZMES and the MECFS community, please join us at the AGM and you'll be given the chance to share. If you can't make it, you are welcome to email your thoughts to [email protected] and they will be read out on the day. Thank you. We'd love to hear from you.

October is Dysautonomia Awareness Month. It aims to increase awareness about dysautonomia, educate people about the condition, and raise funds for dysautonomia research.

Dysautonomia is a disorder of the autonomic nervous system (ANS). According to Dysautonomia International, over 70 million people have various forms of dysautonomia globally.

Dysautonomia Awareness Month: Why it is important and more October is Dysautonomia Awareness Month. There are various ways people can get involved and help spread awareness of the condition. Learn more here.

Dysautonomia Awareness Month, celebrated each October, aims to empower people with the condition and their families. Increased awareness can contribute to improved outcomes and quality of life for people with dysautonomia.

As part of its 2023 campaign, event organizers from Dysautonomia International hope to light up public buildings and monuments in that shade of blue to bring attention to dysautonomia.

If you or someone you love has dysautonomia, read on to learn more about the condition, Dysautonomia Awareness Month, and how you can participate.

October is Dysautonomia Awareness Month Learn more about the types and symptoms of dysautonomia and how you can help raise awareness this October.

Amazing! Congrats to Megan Elder who ran the Dunedin marathon for . Here's a message from Megan:

❤️❤️❤️And it's done. It's taken a good 36 hours to process the whirlwind of emotions and the one that keeps coming out on top... gratitude. For my family and friends who have put up with my nonsense, for my lovely training buddy Jo who literally held me up at the end, for the local businesses and plogging enthusiasts who joined my cleanup efforts, for all of you who followed along and donated your hard earned money to this fundraiser, and finally, to ANZMES and Professor Tate for supporting those folks living with ME/CFS who need their help ❤️❤️❤️

We are so grateful to Megan and all the donors for raising a whopping $4020 which will go towards Emeritus Professor Warren Tate's vital research.

Marathon run to raise money for research A Dunedin woman is running the Emerson’s Dunedin Marathon this weekend to fundraise for research of a serious long-term illness that is on the rise...

Hi! My name is Luka Russell and I’m a third year journalism student at the University of Technology Sydney. For an assignment, I’m currently researching and writing about the experiences of people with ME/CFS that also menstruate. How are symptoms of ME/CFS impacted at different stages of the menstrual cycle?

I would love to hear from any Anzmes members about their work and research regarding this area, or ME/CFS in general.

Additionally, if anyone living with ME/CFS would be open to sharing their experiences with me, I would love to hear from you! Particularly those who experience/used to experience menstruation.
Our discussion can happen over email, text or video chat - whatever suits you!

My assignment is due October 1st, so I’d love to hear from you by September 29th.

If you are interested or have any questions, you can reach me via email at :

[email protected]
Thank you!

Please sign this petition

Sign the Petition Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

Exciting news - take a read. Congratulations to Dr Nicholas Bowden and Dr Lynette Hodges.

Press Release – ANZMES Awards Academics 25K Grants to Boost ME Research For immediate release – 18/09/2023 Two New Zealand researchers have been chosen to receive the Associated New Zealand MyalgicEncephalomyelitis Society (ANZMES) annual grant of $25,000 to unde…

Anzmes has now moved. You will find us at Dunedin Community House 43 Princes Street, Dunedin Central, Dunedin 9016.

Dunedin Community House has moved to 43 Princes Street, Dunedin Central.

Hop in the lift to Tahi - Floor 1 to find Reception - Taupaepae.

Everyone but OAR FM Dunedin - Community Access Media has moved with us this weekend, they join us in October.

Organsiations at Dunedin Community House include Otago Farmers Market, Otago Multiple Sclerosis Society, Dunedin Budget Advisory Service, Stroke Foundation of NZ, The Nest Collective Dunedin, MECFS MEISS, Anzmes, Shakti NZ, FIRST Union, WW AUNZ, SPELD New Zealand, Volunteer South, Dunedin Senior Chinese Association 但尼丁老年华人协会, Asthma Otago, Weave Together.

Unfortunately this scenario is seen all too often. We need more support for our MECFS community. Rebecca is a strong woman who is doing what any other mother would do - care for and fight for her daughters rights!

'Heartbreak': Mum quits job to care for daughter with debilitating condition 'I want to have a job, I want to be able to look after myself ... but I can’t.'

Open Medicine Foundation
📣We're so close to reaching 5,000 sign-ups for OMF’s StudyME project! We already have over 4,660 dedicated individuals on board. Will you help us achieve this milestone?

Sign up now 👉 https://www.omf.ngo/studyme/

▶️ StudyME is more than just a tool; it’s a global initiative connecting those interested in participating in research studies with the researchers conducting them.

▶️ Every sign-up brings us one step closer to understanding ME/CFS, Long Covid, and related diseases.

▶️ No personal medical information is required.

Join us today, and let's make a difference together! 💙

📣We're so close to reaching 5,000 sign-ups for OMF’s StudyME project! We already have over 4,660 dedicated individuals on board. Will you help us achieve this milestone?

Sign up now 👉 https://www.omf.ngo/studyme/

▶️ StudyME is more than just a tool; it’s a global initiative connecting those interested in participating in research studies with the researchers conducting them.

▶️ Every sign-up brings us one step closer to understanding ME/CFS, Long Covid, and related diseases.

▶️ No personal medical information is required.

Join us today, and let's make a difference together! 💙

from World ME Alliance
"Recovery [from ] is extremely rare during the first 2 years, posing a major challenge to healthcare systems."

New research published in today. Recovery from is similarly low.

"As long as SARS-CoV-2 transmission continues and few people are cured from the PCC, subjects with such disabling post-viral syndrome will continue to accumulate..."

Determinants of the onset and prognosis of the post-COVID-19 condition: a 2-year prospective observational cohort study Preexisting medical and socioeconomic factors, as well as acute COVID-19 symptoms, are associated with the development of and recovery from the PCC. Recovery is extremely rare during the first 2 years, posing a major challenge to healthcare systems.

https://youtu.be/1KkUdFBB5Ac

Live Q&A on COVID-19 latest variants with Dr Maria Van Kerkhove.
She highlighted:
The pandemic is not over - millions of people are still getting infected, thousands are dying, many are getting hospitalised and admitted to intensive care, many are suffering from long-COVID
Any COVID-19 variant that is around poses a risk for each and every of us, especially for the vulnerable
Measures we can take at the individual level to minimize our risk of infection, severe disease and death.

Live Q&A on COVID-19 with Dr Maria Van Kerkhove - 31 August 2023

https://www.google.co.nz/amp/s/news.sky.com/story/amp/one-in-five-doctors-forced-to-stop-working-or-cut-back-hours-due-to-long-covid-12914407

One in five doctors with long COVID forced to stop working or cut back hours A GP has told Sky News how she lost her job and thought she was going to lose her house after the condition caused her to take six months off work.

"People with ME/CFS are being harmed by inaccurate clinical advice resulting from a flawed Cochrane Review.
The committee and members of the international Science for ME forum have written to Cochrane requesting:
1. The immediate withdrawal or retraction of the 2019 Cochrane review 'Exercise therapy for chronic fatigue syndrome’ by Larun et al. and all earlier versions.
AND
2. An immediate restart of regular monthly updates on the new review process, with clearly stated timelines for completion of the review to publication within one year from now.
OR
Abandonment of the new review process."

PLEASE SIGN TO SUPPORT

Sign the Petition Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

Our thoughts are with the family and friends of Stephanie Aston

https://www.nzherald.co.nz/nz/beacon-for-many-the-brave-kiwi-woman-who-battled-health-system-for-years-dies/DUHRDCN2ABHITFKQHNQTSPNXCA/?fbclid=IwAR2pa--s-t6tTfYVBU_Ru442-vbrnHTRilSQ_hevSCbYNQ6F2YEOjzBRygk

Auckland woman accused of faking her illness has died Stephanie Aston, who battled the health system for years, has died.

Special thanks to Megan for for vital
https://www.odt.co.nz/news/dunedin/marathon-run-raise-money-research

You can donate here: https://givealittle.co.nz/fundraiser/running-for-me

Marathon run to raise money for research A Dunedin woman is running the Emerson’s Dunedin Marathon this weekend to fundraise for research of a serious long-term illness that is on the rise...

UK scientists find link between proteins related to blood clots and long Covid Biomarker discovery indicates that sufferers from brain fog and fatigue post-virus could be treated with anticoagulants