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

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

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/

Congratulations to the Winners of ANZMES Writing Competition

We had some great entries and would like to thank everyone who entered. These are the winning entries; with 1st prize winning a free membership subscription for a year, 2nd prize a $20 Gift Voucher and 3rd prize a $10 gift voucher.

Research into ME/CFS means

Progress
It
Reveals hope
Reflects care
Fosters understanding
It
Inspires compassion
Legitimises suffering
Encourages solidarity
It
Voices frustration
Confronts ignorance
Silences detractors
It
Sparks interest
Promotes awareness
Educates others
It
Builds knowledge
Supports initiative
Justifies funding
It
Demands attention
Requires recognition
Urges action

Bethne Dodd. ©

Hope

There are times when hope
for a cure or treatment for ME/CFS
can seem elusive
time moves slowly
the view from my sofa
an unrelenting grey

At such times it helps to remember
in laboratories, offices, hospitals and
universities around the world
there are teams dedicated
to finding the answers
to our particular puzzle

Theories as to cause and cure
put forward and tested
and all, regardless of success
are steps towards the goal
the process of discovering the answer
includes discovering what the answer
is not

I believe the day will arrive
when we will have our answer
I feel immense gratitude
to all those working to that end
testing theories, developing tests
and medicines
and all those participating in trials
people I will probably never know
but to whom I owe so much
not least the return of hope

Wendy Allen ©

The War Within
I used to be a soldier and so proud I was to serve. 
Active strong and healthy, with an impressively steady nerve. 
I always aspired to take a step and go further than the rest 
Beyond fatigue, aches and pain, to be the very best.   

And as a younger man, I dreamed big and was proactive when I played 
Hoping that in my older years, my dedication paid. 
Then one somber month alone, I began to feel unwell 
But the warrior inside of me, would never ever tell. 
So I fought and fought the hardest battle, I had ever had to fight 
But this battle was different and would not be beat by might. 
The more I fought, the more I tired, and down and down I went 
Even then I fought some more, until all I had was spent. 
That month grew to two, then three and four to five 
Too tired to fight anymore, I barely felt alive. 
It doesn’t matter how tough you are, M.E. don’t give a damn. 
The harder you try to fight it, the more it’ll drag you down.   

Life has changed a lot these days, my dreams no longer bold 
No more dreams of scaling mountain passes in search of Aztec gold. 
Holding down a part time job it seems, is challenging enough 
‘cause M.E is my full time now and the pay is rather rough. 
Struggling financially, with a massive loss of pride 
If only there was ever a way, off this retched hellbent ride.   

Some confidence, pride and security, to walk the local hills 
To eat a spicy curry, to enjoy some simple thrills! 
To earn a buck, to make my mark and have some dignity 
That is what ME/CFS research has come to mean to me. 

Conway Judge ©

Harvard Collaboration Research Presentations Now Available

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.

ANZMES ME Awareness Day Activities for Members

ANZMES Writing and Poetry Competition

We are holding our Writing and Poetry Competition for members again this year. The subject is “Research and ME/CFS”.  Members are invited to write poems and essays on “What ME/CFS Research means to me?” As always we are looking forward to seeing your entries as the standard has been very high over the years. The Prize Winners entries will be included in our next Meeting Place Magazine.

First Prize – Free Subscription
2nd Prize $30 Voucher
3rd Prize $20 Voucher

Please email your entries in to

info@anzmes.org.nz

Or you can surface mail to:
P O Box 36-307
Northcote
Auckland

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

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.

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

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’

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/