All the latest news from ANZMES.
Today, 12th of May 2020 is ME Day!
As part of ANZMES awareness raising we are sending out these posters.
Could you please share them far and wide so many people get the message
that ME is an invisible Illness.
You can see a broken leg or arm as you have a cast on but many of the symptoms of ME are invisible and can not be seen.
Sharing these posters helps raise awareness and understanding.
Take Care and be kind to yourselves.
Please note: this is an American guide so some of the drugs that are suggested for use are not available here in New Zealand.
The U.S. ME/CFS Clinician Coalition,
A group of U.S. ME/CFS experts, has authored a handout on the basics of diagnosis and management of ME/CFS. This handout is being made available for the medical community to help them better understand how to recognize ME/CFS and how to appropriately care for patients. Patients may also find it useful to provide this handout to their own providers. ME/CFS experts in the U.S. formed the ME/CFS Clinician Coalition in March 2018 with the goals of advancing the clinical care of people with ME/CFS and providing clinical insights to researchers in the field. More information on the 2019 summit is available here. Linda Tannenbaum actively participated in these coalition meetings. The handout on diagnosis and management provides a link for medical providers who are interested in getting more information on the coalition.
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!
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
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
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/
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.
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.
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 )
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
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/