New Zealand: ANZMES

RoseE said:
ANZMES* are involved in some GP education this weekend... :)


*ANZMES (Associated NZ ME Society), is our national support and advisory charity for ME.

Edited to add: As shared on their facebook page.
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Death* by a thousand facts.

* to disinformation
 
If anyone is thinking of standing for the ANZMES committee, it would be a good idea to get your nomination form and a paragraph about yourself in to them tomorrow.

While nominations are accepted up until the AGM in November, it sounds as though information about nominated candidates will be sent out to members very shortly.
 
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New Zealand's national ME/CFS organisation, ANZMES, has its AGM in November. It's important that we get good people on the committee.

This thread is for any members of S4ME to let others know if they are standing. Hopefully this will help those of us who are ANZMES members be better informed when we vote.

More discussion here: NZ ANZMES AGM 2019. Members Only
 
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The postal voting papers for the ANZMES elections have just arrived - and I'm confused.

There is only one nomination each for President, Vice President and Treasurer. You have the option of voting for them or abstaining. Quite what's the point of a vote here, surely they are automatically elected?

For the Executive Committee there are 12 nominations and you can vote for as many as you like. You can also vote against or abstain. It doesn't say, unless I missed it somehow, how many people out of the 12 will be elected to the committee, nor if there is a minimum number of votes they need to get, nor how negative votes are counted - does each no negate one yes?

Also a bit weird that you have to put your name on top of the voting paper so the person counting the votes can see who voted for or against whom.

Anyway, if anyone knows the track record, good or bad, of any of the nominees, I'd love to know. Maybe by PM, for discretion.

Not much time to vote, deadline is 19 October.

@Hutan, you might know how the voting system works?
 
I don't think these have been posted yet?
Recorded at AGM in November 19, posted on Youtube March 20.
Some issues with sound quality, especially with the Q&A video.

Dr Vallings (eclectic overview of international research, nothing new in there):



Prof Tate (presentation of his team's work, mostly published, but some may be unpublished?):



Q&A (both, but mostly Prof Tate):

 
I knew Prof Tate had a daughter with ME but I didn't realise he had two family members with ME :(.

He describes how funding is very difficult, often wondering how he is going to continue to pay wages. One nice story was that he had a South Island farmer phone him up and they got in a bit of a heated debate about ME. Following that the farmer donated 100,000 to his research and followed up right before this talk with another significant donation.

Here is the last slide showing what was planned for 2020
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He would also like to try and replicate the Stanford IDO2 gene testing to see if his cohort of patients also have those mutations.

He has samples stored from people taken monthly and would like to compare "good" samples with "relapsed" ones to see if he can find something that is significantly changed.
 
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An email from ANZMES (one of NZ's ME/CFS charities). Covid-19 is just now starting to spread around the country. Professor Tate is highly respected in ME/CFS circles here and his views will surely solidify vaccination hesitancy in some people with ME/CFS.

ANZMES asks experts for their recommendations on whether people with ME/CFS (pwME/CFS) should get the COVID-19 vaccine or not.

Dr. Ros Vallings, Howick Health & Medical Centre

COVID-19 can be a severe and debilitating disease which can lead to multi-organ damage and death in some people. If someone with ME/CFS catches COVID-19 it is likely to cause a significant exacerbation or relapse of their ME/CFS symptoms, as has been shown in the UK. Yet those experiencing a heightened immune system may be protected against catching viruses – although there is no guarantee. The Pfizer vaccine that is being administered in New Zealand is well studied and exceptionally safe and provides a high degree of protection. However, as with any vaccine some people with ME/CFS have an exacerbation of symptoms which overlap with the commonly reported side effects of the COVID-19 vaccines. A small percentage of people may have a more severe exacerbation of symptoms. I have many of my ME/CFS patients immunised now and not one has had a bad reaction to date. This may be because they used Dr. Nancy Klimas’ antihistamine suggestions which I recommend. I also provide a prescription for prednisone for patients to use if they get sicker, but it is not to be used long-term, and so far only one patient has needed it. For more information please read the recommendations on Dr. Vallings’ website: http://www.drvallings.co.nz/news-items/covid-19-vaccines

Emeritus Professor Warren Tate

I’m a strong advocate for vaccination of any family household member who is not health compromised as this provides protection for the unvaccinated, however I propose a cautious approach for all people with ME/CFS. This is because although the predictive analyses of immunologists might suggest the risk of ongoing relapse (of ME/CFS symptomatology) is small, the patient self-reporting suggests the risk is significant. For example if the person with ME/CFS experiences severe food allergies, chemical hypersensitivities, is prone to frequent debilitating relapses and has a significant compromised level of activity, then I would suspect a much higher risk in comparison to pwME/CFS who do not have these extra dimensions of the illness. In two international studies that came across my desk in regards to the Pfizer vaccine (administered here in NZ) after one dose, 10% reported severe effects on ME/CFS, 40% had mild-moderate effects and 50% had no effects. After the second dose, again 50% had no significant effects, yet nearly 30% had severe effects for at least one month, and 20% had moderate effects. Another study has reported 30% severe effects after the first dose. Anecdotally, of the three women in my university group who had the vaccine, one required hospitalisation for IV fluids after 2 weeks of being severely affected, another had two weeks of a moderate relapse and the third woman had no significant side effects. This seems to mirror the international patient reporting of the much larger groups, and made their results seem genuine to me. I believe therefore that I cannot provide a blanket recommendation for or against the vaccine, but rather believe that each individual should weigh up the decision based on their personal ME/CFS history. If pwME/CFS decide to vaccinate then I would suggest following Dr. Klimas’ antihistamine protocol.

Dr. Nancy Klimas, Nova Southeastern University

COVID kills people. It kills people with over-activated and damaged immune systems preferentially - and that is what ME/CFS is all about. So while there certainly is a risk for an ME relapse with these hyper reactive vaccines, you have to weigh the possibility of an ME relapse against the risk of death from COVID-19. For more information and for advice for people with mast cell activation syndrome visit: https://www.nova.edu/nim/To-Vaccinate-or-Not-with-MECFS.html

In conclusion from our experts

There is not a definitive answer about whether pwME/CFS should or should not get the COVID-19 vaccine. As the condition is highly individualised, so too, is the response to the vaccine. Some have no effects, some only the expected immune response, some experience improvement of symptoms, and some a worsening of symptoms or a relapse. So what is appropriate for the individual is best considered in conjunction with your GP or specialist who has access to your personal medical history.

Should you choose to vaccinate

Center for Disease Control (CDC) states that people with ME/CFS or fibromyalgia should rest for several days before and after the vaccine, as anecdotal information shows that symptoms can resurface while the immune system is activated. The CDC provide information on what to expect before and after your vaccine: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/expect/after.html

Dr. Lucinda Bateman, Bateman Horne Center states that pwME/CFS should be rested and stable prior to the vaccine, and plan on resting/relaxing for at least 72 hours afterward. Supportive care will include anything you usually do for flu symptoms, PEM, allergy flares, worsened orthostatic intolerance, etc. If anything, including a vaccine, makes you sick enough that you are unable to maintain adequate fluids and nutrition, or results in fluid and electrolyte losses (sweating, diarrhea, etc), it is always appropriate to seek IV fluids as a primary intervention.

Antihistamine Usage

Dr. Klimas suggests that before the vaccine, make sure you are taking enough antioxidants, particularly NAC or glutathione and CoQ10. Take an antihistamine before and for several days after the vaccine – the strongest one you can tolerate. Please note: that if you take the vaccine you should take the whole recommended dose, and the current vaccine Pfizer should be administered twice.

As always when dealing with medications and supplements please only do so under the direction of your General Practitioner or Medical Professional to ensure correct dosage administration and to avoid contraindications with your existing medications and personal medical history.
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Further discussion of this issue here:
New Zealand: Covid-19 vaccinations for people with ME/CFS
 
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From the ANZMES website, about the research.
The experience Dr. Brooks refers to is that of Prof. Tate, winner of the Rutherford medal in 2010, who has been investigating ME/CFS since 2012, and has identified molecular signatures of ME/CFS. As co-investigators for this new study, Dr. Brooks and her team are conducting immunological studies and Prof. Tate and his team are performing molecular studies of Long COVID and its relationship to ME/CFS. Prof. Tate aims to perform molecular analyses on a subgroup of this study in addition to providing samples from his ME/CFS patient group for analysis of immunological status before and after vaccination. In addition to being an experienced cellular immunologist, Dr. Brooks is also Director of Auckland Cytometry, the core facility which houses the leading-edge technologies necessary to perform these critical analyses.
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How will this research benefit the ME/CFS community? Since a certain percentage of people with Long COVID symptoms also fit the diagnostic criteria for ME/CFS and many go on to receive this diagnosis as well, the samples analysed as part of this study will be beneficial in tracking early onset ME/CFS in comparison to Long COVID. It is hoped that the researchers will be able to identify key markers of immune dysfunction, especially as a percentage of samples will be obtained at very early stages of disease. This investigation into the unique immune signature of ME/CFS and Long COVID has the potential to unveil a biomarker specific to these conditions. As Dr. Brooks’ core expertise is with advanced flow cytometry, this research will screen for over 100 immune cell biomarkers which to date supersedes any previously screened for in ME/CFS research. “This will be a world first.” states Dr. Brooks.
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As a side note, I found the explanation of the ANZMES logo on the website, beside the detail about the research, rather sad:
The ANZMES logo, is the New Zealand Albatross. This is symbolic as these birds need a good strong wind to lift them up so that they can fly; rather like the help sufferers need from others in order to begin their lives again.
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Of course, there's some truth in that, but it makes it sound as if we are sitting around, without lives, until someone comes along to lift us up, and, when they do, we recover. It patronisingly makes us sound like damsels in distress. It suggests nothing about how it is often possible to live a worthwhile life while waiting for the breakthrough in medical knowledge, nor does it recognise the huge part people with ME/CFS have played in progressing the understanding of the illness and fighting misinformation.
 
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Hutan said:
From the ANZMES website, about the research.


As a side note, I found the explanation of the ANZMES logo on the website, beside the detail about the research, rather sad:

Of course, there's some truth in that, but it makes it sound as if we are sitting around, without lives, until someone comes along to lift us up, and, when they do, we recover. It patronisingly makes us sound like damsels in distress. It suggests nothing about how it is often possible to live a worthwhile life while waiting for the breakthrough in medical knowledge, nor does it recognise the huge part people with ME/CFS have played in progressing the understanding of the illness and fighting misinformation.
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I agree about your concerns about the explanation of the albatross. I do not think it is “pwME” centred within Aoteroa/NZ culture and reflects a position that we rely on science, medicine or the wellness industry to “fix us”. I also find the positive spin of hope, lifting up, assumes we are broken as people and cannot draw upon our own strengths, supports and cultures. They are based in Dunedin and are rightfully proud of their albatross colony and research. For me, nothing much has been going on in science to help “treat” my illness so I took my own health journey to find out what might help me, most of this has been gleaned from training in the bio-psycho-socio-cultural-spiritual model of health. I also find it difficult to be in patient support groups and have avoided them because of my profession and there is also an assumption you should be using alternative medicine, special diets and expensive supplementation, well-being courses etc No one has the answer, just what worked for them and often many of these approaches require money and resources that pwME often don’t have as we maybe on benefits, live away from big cities or have to keep to a strict budget to maintain the essentials for our whanau’s health. Health beliefs and practices have developed within the pwME community and to a degree that has become pwME culture with a language to match. I feel alienated from this Eurocentric culture at times, although I am a Pakeha, I was born in Dunedin, raised in Rotorua and lived in the Pacific Islands (and Europe) and my close whanau are Maori and my children are part Samoan. When I see the albatross, I see a powerful, solitary bird that braves the wind and stormy seas of the South Pacific and sub Antarctic Islands and I can derive much meaning as a pwME into the resilience of living and experiencing inhospitable environments (both internally and externally) but always returning to the sanctuary of the whenua and supportive networks.
 
Hutan said:
the ANZMES logo
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When I first realised the bird in the ANZMES logo was an albatross I immediately associated this with the saying 'having an albatross around one's neck' - which ME could certainly qualify as - but it still struck me as a weird symbol to choose, especially as it leaves open the unfortunate interpretation of the pwME being an albatross around somebody else's neck. No thanks!!!

FWIW, having spent a few years in Dunedin myself I love the Royal Albatross, a truly stunning bird to watch. And of course albatross have other symbolic meanings attached to them, like bringing good luck to mariners (just as long as you don't harm the birds, that's very bad luck). But the ANZMES interpretation of its symbolism reads awfully dated. "like the help sufferers need from others in order to begin their lives again" - sure, I need help with this and that, as does everyone at some point in their life, but I'm not sitting here passively waiting for life to begin.
 
The ANZMES AGM was held on Saturday 6th November 2021.

Fiona Charlton was elected president, and there are some other new faces from last year's AGM too. A new era for our national ME organisation ahead.

Fiona recently send this introduction out to the regional groups...
Tēnā koutou katoa

I am writing to you as the newly elected president of ANZMES, to let you know I have created this new email address (president@anzmes.org.nz) and to say hello! :)

Firstly, thank you to those who participated in voting in the new committee and office bearers. I am honoured to have been asked to step into the role and am grateful for the confidence vote. I look forward to serving the community to address the needs of people with ME/CFS, their families, carers, medical professionals and of course all the regional support organisations and groups - all of you. I see us all working together to further the cause to make positive impactful changes in the lives of all those affected by this debilitating condition.

I have a background in marketing and management as well as non-profit fundraising both here in NZ and in the UK. I have post graduate qualifications in health science alongside undergrad degrees in education and psychology. I endeavour to utilise these skills/knowledge in the role of president and I will update you in due course with plans for the future. I have ME/CFS & FM as well as several auto-immune disorders so I fully understand the needs of our community.

Heather Wilson has stepped into the vice president role to help with a smooth transition through this change of leadership. Re-elected members are Steve Murray, Claire Verryt, Dr. Anna Brooks, Wendy Matthews, Dr. Rosamund Vallings, Lisa Thomas, Suzanne Duffy, and Dr. Ken Jolly, with Dr. Sarah Dalziel as ex-officio.

Moving forward we'd love to have more representatives from each regional group/organisation on committee, but if this isn't possible, I am here to provide an open channel for your ideas, to address your needs, and to ensure that we are all working in the best possible way for the whole community. So please feel free to email me any time.
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In other news from the AGM:
  • Anna Brooks (Immunologist, Auckland University), Prof Tate (Biochemist, University of Otago) and others talked about ideas for research during the Q&A post the AGM presentations.
  • Anna talked briefly about her connections with the MoH and IMAC and the possibility of research into fractionated dosing of the covid vaccination for pwME, etc.
  • ANZMES was bequeathed significant funds some time ago, and the funds have recently been deposited into their bank. I understand that the amount was close to $1 million. Hopefully that enables some great strategic planning and actions.
 
The ANZMES website seems to be down.

I get a message saying 'Bad gateway'.

Edit - it's back up.
 
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ANZMES are calling for people to join them in advocating for the ME/CFS community
Do you know anyone that has skills, time and energy?

Anzmes is seeking people who would like to join the committee or perhaps a sub committee.
"We are seeking people who will dedicate their time to writing, creating, producing, designing, and delivering materials and projects to fulfil our constitutional goals and ensure we continue to deliver our mission and vision, as the national advisory organisation for ME/CFS."
The close off date for applying is 31st March 2022.

More info in the PDF provided by ANZMES.
 

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I think it is always a good idea to keep us all informed of what supposed charities for ME are up to wherever they may be.

Charities, especially if not large often can work in a blind spot were they can do whatever and the few people who notice and speak up get dismissed.

But if people affected by the illness from farther afield also notice and they are getting more scrutiny they may start to feel obliged to check their personal beliefs against some facts.

This isn't about shame and blame but about accountability. It's literally their job to provide accurate information.

So here they are -- the executive committee for ANZME:

https://anzmes.org.nz/tips-advice/

Perhaps they might like to be outward looking and become familiar with the community of ME sufferers beyond their enclave and join us here to discuss their advocacy goals etc.

They don't seem to have a mission statement but it does seem that they have a donation option for bio research being done by Warren Tate. So some mixed messages there.
 
Looking at this from the outside, my impression is that the new president is genuinely trying to address some of ANZMES' weaknesses most of which appear to be the result of an echo chamber effect crossed with small-group dynamics.

In such a situation the biases of one or two dominant individuals can become magnified and overly influential and group loyalty demands they not be critically evaluated and habits develop that are not easily changed even when they no longer serve their original purpose. This is not at all unique to ANZMES, it happens in many small organisations with only a small pool of volunteers.

It then becomes very difficult for any single person or two to try and open up thinking as this is often perceived as a threat to the group and they're ignored, obstructed or frozen out. As per @Hutan's report.

If my observation is correct and the new president really is trying to implement better processes she needs to be supported. In fact, now may be a short window of opportunity - new president plus a significantly improved financial position due to a generous bequest - to make ANZMES into a more effective organisation.

The million dollar question, how to get the right people into the right position within ANZMES to make the most of the opportunity?
 
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Special Episode Part One: ME/CFS, disability and health equity - Know M.E. Series

Know M.E. the podcast where guest speakers talk about pressing issues surrounding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Post COVID Conditions. Join researchers, clinicians, and patient advocates as we take a deep dive into the most recent, evidence-based information, so that you too can know M.E. In today's bonus episode:
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ANZMES president Fiona Charlton speaks with Dr. Neera Jain and Kate Waterworth about ME/CFS, disability, health equity, and the ANZMES petition to reclassify ME/CFS as a disability.

A full transcript of today's episode can be found here: ⁠https://docs.google.com/document/d/1n...
00:00 Series Introduction
00:24 Episode Introduction
00:42 Speaker Introduction
02:14 ANZMES petition
04:48 How is disability understood socially and historically?
07:14 What is the current Aotearoa context?
10:49 What are the significant inequities to access of healthcare for people with long term conditions and disability?
17:33 Is it important for funding, services, and policies to cater for people with ME and long COVID?
20:56 Whaikaha formation
21:33 What are the biggest barriers for health equity?
23:07 Ableism 25:49 UN Report
26:58 Historical context of ME/CFS 27:24 Legitimising ME/CFS
27:44 Societal stigma around work productivity
29:28 Vocational rehabilitation
31:28 Next steps
34:04 Conclusion
34:45 Outro
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