ANZMES Survey 2020

To be completed and sent in by 15th December 2020

The Survey Link is:

https://www.surveygizmo.com/s3/5728298/ANZMES-Survey-2020

1. It is totally voluntary to complete the survey. 

2.  Completion of the survey is anonymous and so we will not know who has completed the survey or be able to link a person with their responses.

3. All the responses will be joined together so only group information will be used.

4. The final statistics from the survey will be shared with others.  For example it may be shared with the media via a press release. This information will also be used for lobbying. 

We are aware that ME/CFS has a large impact in a variety of areas so we could have included many areas in this survey however, we are also aware that completing a long survey would not be possible for many people with ME/CFS so we have not been able to include all the areas.

We would encourage you to complete the survey, as the more people who complete the survey the more notice others will take of the results. If you know others with ME/CFS please encourage them to complete the survey as well. 

The results will be summarised in the Meeting Place and on the ANZMES website.

ME Day – 12th May 2020

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.

NEW GUIDELINES FOR DIAGNOSING AND TREATING ME/CFS A resource for clinicians and patients

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.

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

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

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/

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 “ME/CFS – The Invisible Illness”.  Members are invited to write poems and essays on The Invisible Illness. 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

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