News

All the latest news from ANZMES.

Help “Advances in ME/CFS Research and Clinical Care” win the Frontiers Spotlight Award!

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Advances in ME/CFS Research and Clinical Care, a series of 24 papers on ME/CFS published in 2018-2019 in the online (open access, peer-reviewed) journals Frontiers in Neurology and Frontiers in Pediatrics, is in the running to win a $100,000 prize! The prize money must be used to fund a scientific conference on the topic. If it wins, Ken Friedman, the topic editor, has indicated he will donate the money to the IACFS/ME to help fund their 2020 International conference!

The editors of Frontiers determine the winner of the prize; there is no nomination process. The most active, collaborative and impactful Research Topics from the last year are shortlisted and then the Jury, drawn from members of the Frontiers Editorial Board, is tasked with choosing the final winner. Finalists are selected and judged on scientific and editorial excellence, international reach, subject novelty, and interdisciplinarity of their Research Topic. 

An important factor is the interest the topic generates around the world, based on article views and downloads, citations, and international reach. We can help by viewing/downloading articles, and encouraging others to do so, especially viewers outside the U.S.

It also helps to post article links on Facebook or Twitter, retweet, and discuss in blogs and on Reddit and Google+. All these metrics are tracked and count toward the impact score.

For a complete list of papers with links, visit https://www.frontiersin.org/research-topics/7718/advances-in-mecfs-research-and-clinical-care#articles. This special issue was edited by Drs. Kenneth Friedman, Cindy Bateman, Alison Bested and Zaher Nahle.

The papers will be collected and published as a monograph, and cover a wide variety of topics in ME/CFS research. Find several that you are interested in and click away!

  • A brief history of the struggle for recognition of ME/CFS as a disease, and the struggles to establish ME/CFS research and clinical care
  • Identifying the cause or trigger(s) of ME/CFS
  • Case definition: What symptoms best characterize the disease?  What symptoms are mandatory to diagnose ME/CFS?  How can we make diagnosis as easy as possible for the clinician? 
  • Methodologies for validating a ME/CFS diagnosis
  • A new method to determine the number of individuals within a given population who suffer from the disease
  • A sampling of current, ongoing ME/CFS laboratory research: microbiome, the role of neuroinflammation and cytokines, using a bio-bank to study tissue abnormalities
  • Clinical research
  • Challenges of providing healthcare to the ME/CFS population
  • Special needs of pediatric and adolescent patients

Last year’s winner received more than 80 citations, 70,000 views and 9,000 downloads, and one of the papers was featured in The Washington Post. The 2017 winner brought together 630 authors, publishing 149 papers and receiving more than 1.2 million views and downloads. So far, the ME/CFS topic has nearly 140,000 views.

We know that Dr. Anthony Komaroff’s recent paper on ME/CFS in the Journal of the American Medical Association was one of the top five in JAMA in July, so there is great interest right now in ME/CFS. Let’s help publicize these papers and generate even more interest!

Here is a shorter version for Facebook or Twitter, if you could post this also.

This series of 24 of open-access, peer-reviewed articles on ME/CFS that appeared in the journal Frontiers in Pediatrics in 2018-19, is in the running to win a $100,000 prize based upon the decision of the editorial board, BUT INFLUENCED BY READER INTEREST (clicks, downloads, shares)…so please click, share or download: https://www.frontiersin.org/research-topics/7718/advances-in-mecfs-research-and-clinical-care#articles

Thank you!

Charmian Proskauer
Massachusetts ME/CFS & FM Association
U.S. Action Working Group

Dry July – Energy Drink Free to raise awareness for ME/CFS

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Hi there. My name is Jeremy and I’m an addict.
No my addiction isn’t alcohol – it’s something much worse…..Energy Drinks.
The first thing I do in the morning is crack open a can of ‘V’ and call that my breakfast.
Throughout the day I drink numerous cans and the end result becomes approximately a litre or more every day.
This may seem hilarious to some but it’s a major addiction and a serious problem.
The amount of caffeine and sugar inside energy drinks is ridiculous and I’ve become completely dependent on it to function in my day to day life.
You can view Jeremy’s Givealittle page here

Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome – Jama network

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When does an illness become a disease? When the underlying biological abnormalities that cause the symptoms and signs of the illness are clarified.

Over the past 35 years, thousands of studies from laboratories in many countries have documented underlying biological abnormalities involving many organ systems in patients with ME/CFS, compared with healthy controls: in short, there is something wrong. Moreover, most of the abnormalities are not detected by standard laboratory tests. In 2015, the Institute of Medicine of the National Academy of Sciences concluded that ME/CFS “is a serious, chronic, complex systemic disease that often can profoundly affect the lives of patients,” affects up to an estimated 2.5 million people in the United States, and generates direct and indirect expenses of approximately $17 billion to $24 billion annually.

To read the full article see this link https://jamanetwork.com/journals/

Harvard Collaboration Research Presentations Now Available

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Great News!

Recordings of individual presentations from the OMF-funded Inaugural Harvard ME/CFS Collaboration Symposium “Finding Clarity” Community Day are now available. Symposium presentations included a clinician panel featuring Dr. Amel Karaa, Dr. Anthony Komaroff, and Dr. Donna Felsenstein and individual presentations by Dr. Michael VanElzakker, Dr. Ron Davis, Dr. Maureen Hanson, and Dr. Wenzhong Xiao. Introductory, overview and summary remarks were made by OMF Founder & CEO/President, Linda Tannenbaum and Dr. Ron Tompkins. View all recordings here.

Public Donations Towards Professor Warren Tate’s Research into ME/CFS Welcomed!

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Professor Warren Tate’s biochemist research work is very well respected and has been presented on the international stage in recent times; he spoke at the 12th International ME Conference in London in November of 2017 (see his profile on this page) http://www.investinme.org/IIMEC12.shtml and a presentation was delivered by one his colleagues at the recent Griffith University CFS/ME conference in November last year.

Prof Tate’s research group continues to work towards a bio marker test
for ME/CFS.

More details about his research will be uploaded soon.

If you would like to donate towards his research please make donations through this link. https://alumni.otago.ac.nz/donate/myalgic-encephalitis. 

Report of Dr Vallings’ Meetings Held in Nelson; & Long Time Member of Nelson Group Honoured.

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Dr Vallings and Clare Moody at the Recent Meeting in Nelson.

Dr Vallings’ Public Presentation on ME/CFS & FM Diagnosis and Management – based on the latest research held in Nelson on Monday 11th of February.  

There was a good turnout with around 90 people attending the meeting.

Dr Ros Vallings talk was very informative, helpful and well received; there were some great questions afterwards.  Dr Vallings was able to explain such a lot, so clearly in a relatively short period of time and yet give everyone something helpful to take away with them

A lot of positive feedback was received on the day of the meeting and afterwards via email.

Some of those in attendance expressed how Dr Vallings had helped to validate their experience of the illness which brought comfort to them.

A highlight of the meeting was that Doris Gilbertson, who has been an active member in the Nelson region for 40 years, (and who was known by Dr Vallings) celebrated her 93rd Birthday on the day of the meeting, so the Nelson group took the opportunity to honour her work and commemorate her birthday at the same time (see photograph below)

Two display tables were put out with both Local and National Resources.  Many of these resources were picked up. There were 14 people who signed up to join the Nelson group and email list on the day

A meeting for GP’s was also held and despite the fires at the time a good number turned out for the meeting. All in all it was a very beneficial visit by Dr Vallings.

Clare Moody (Report Abridged )

Doris Gilbertson and Clare Moody

Karly Ryder’s Account of her Wellington Round the Bays Run to Raise Funds for ANZMES

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Karly Ryder

Read Karly’s amazing story, which was not without incident – and then see the final total she raised – ANZMES is very grateful for all you have done for us! 

I was nervous arriving at the start line. The day before the race I split my big toenail, had terrible cramps, and caught a cold and throat thing from my son. I wasn’t feeling particularly positive going into the run. After a quick warmup and stretch I decided to read through all the donor comments from my givealittle page to pump myself up. It was just what I needed and then it was go time. I really enjoyed the run. It was hard, but I didn’t feel like I was overdoing it and I didn’t notice my sore toe, or sickness. I honestly just kept thinking about when I could barely get off the couch a couple of years earlier and how far I have come. It probably wasn’t the best subject matter because I could feel the emotions building and then, as I saw my husband, son and family, and crossed the finish line, I could barely breathe from all of the emotions. I caught my breathe, then cried, then hugged my supporters and cried some more. Turns out I ran a post sickness personal best time. I feel so proud to have done something helpful, but also to show that it does get better. I hope that my story at the very least resonates with CFS/ME sufferers and supporters, and provides a bit of hope that in time things will get better. And after you get better and run a race because now you can, you too can feel good and then go home and eat your weight in chocolate.

Karly’s effort for ANZMES clocked up an amazing $1,720.00 – WOW. See the full story about Karly’s struggle with ME/CFS and total raised on her givealittle page – And more photos below of her run.
https://givealittle.co.nz/fundraiser/slow-and-steady-wins-the-race

All Ready to Go
Karly sharing a proud moment with her son when it was all over.

Dr Rosamund Vallings One of 3 Finalists for the ‘Senior New Zealander of the Year Awards’

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Dr Rosamund Vallings (Auckland) pictured with her certificate, was one of three finalists for ‘The Senior New Zealander of the Year’.
The overall winner was Dr Bill Glass a well deserved winner who was described as “The father of occupational medicine”.
Visit the link below to find our more information about the recipients of the awards
https://nzawards.org.nz/news/semi-finalists-confirmed-2019-kiwibank-awards/
or visit
https://www.nzonair.govt.nz/ 

Slow and Steady Wins the Race

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Running to raise money for CFS sufferers following my own experience with the disorder.

https://givealittle.co.nz/fundraiser/slow-and-steady-wins-the-race

In October 2015 I got a virus. I had been working a total of 2 months at a new job, while also doing some freelance graphic design. I was sick for a week and then I seemed OK, just tired. Three weeks went by and I remember thinking It was crazy that I was still tired. Then the migraines started. I have suffered from migraines since I was a teenager, and although I often went to A&E because of them, up until this point they were reasonably infrequent. However now the migraines were occurring regularly. It was horrible. My energetic spark was draining out of me.

I was so tired I couldn’t bring myself to do anything. The word post viral chronic fatigue syndrome (CFS) was spoken during a doctors visit and that was it. No quick cure. Wait it out. Try doing small amounts of activity because it helps, but not too much because then you will spiral down again. Finding the balance was impossible. The game of energy see-saw began.

For me, my eyes, energy and the ability to cope with incoming stimuli were affected the most. My eyes seemed to become overworked with a fraction of what they used to do, which resulted in what felt like continuous migraines. I quit my new job, and my design business was put on hold indefinitely.

Getting out of bed was a struggle. However, I was lucky that I could because many with this affliction cannot. I had many months on the couch not able to do anything except listen to books or podcasts with the curtains drawn. I couldn’t watch TV, use any screens, read, or focus on anything for too long without the exhaustion overwhelming me. Having a shower was a major milestone for the day. The incoming stimuli was constantly overwhelming and if I tried to get out of the house it was too loud, too fast, too bright and always overwhelmingly debilitating.

At this point, as you can imagine, I started slipping into the darkness. Depressed that this was happening to me, bored, lonely, and anxious that I didn’t seem to be getting any better and It was always going to be like this. It wasn’t fair. The most common phrase sobbed into my husband’s chest was “I just want to be better again” .

Then I got pregnant… CFS and pregnancy don’t mix well. CFS and labour don’t mix well, and of course, having a small human to take care of while trying to survive chronic fatigue syndrome definitely doesn’t mix well. Thank goodness for my husband, family, and the fact that I have such amazing support.

It’s 2019 now. The journey was brutal, but my son is now 2 years old, and my game of energy see-saw has settled significantly. I still struggle with my eyes being tired, and have had to think about alternate career options that don’t involve a screen, but I can run. I run very slowly, but everytime I do it, It feels like magic that I can do it at all.

In February, three years and 4 months after I got sick, I will be slowly running Wellington Round the Bays 6.5km, and raising money for ANZMES, the Associated New Zealand ME/CFS society. I hope to raise funds to help other people who may be struggling with this “but you look fine” disorder.

I am running for those who can’t and to raise awareness, but ultimately I am running for myself and the magical feeling of getting my spark back.

Karly Thornton


    Dr Vallings awarded NORTHLAND 2019 KIWIBANK LOCAL HERO MEDAL

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    https://nzawards.org.nz/news/northland-2019-kiwibank-local-hero-medalists/

    As part of the 2019 Kiwibank New Zealander of the Year Awards, the winners in the Local Heroes category were presented with their awards tonight at a special medal presentation ceremony held at the Northland Events Centre in Whangarei

    Back row L to R: Paul Reyburn (Collected on behalf of Kerry Reyburn), Malcolm McKerrow, Patrick Newman, Brent Martin, Brian McLachlan

    Middle row L to R: Pam Stevens, Tanya Filia, Elyse Lewis, Fay Colthurst, Ellen Norman, Ciaran Torrington, Major Christopher Williams

    Front row L to R: Warren Daniel, Nigel Ross, Liane Blair, Virginia Eiger, Robyn Warin, Ada Fleet, Dr Rosamund Vallings (Auckland recipient), Greta Harman, Craig Harman

    Absent:  Heather Stanley

     

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