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ME Auckland AGM
All are welcome to ME Auckland’s AGM, featuring guest speaker Dr Lynette Hodges.The talk will be held via Zoom. Simply click the link below to join (if joining from mobile, it may ask you to download the Zoom app). Details below 
https://us02web.zoom.us/j/87641407370
Meeting ID: 876 4140 7370
Gavin McGregor’s photography project
ANZMES is supporting Gavin in his project and will be using his work
for awareness raising and to advocate for those with ME/CFS. We thank
Gavin for this opportunity.
I am a photographer working on a portrait series on living with ME/CFS.
For this series, I am looking for people who are willing to sit for a
portrait and talk about how ME/CFS has impacted them.
The purpose of the project is to increase awareness and understanding
of how living with the condition impacts people’s lives in a very real
way.
This series will consist of a portrait series and personal stories of
those living with ME/CFS and will culminate in an online exhibition.
As well as ANZMES having the images and stories for their use as a
resource to further their advocacy work.
My partner lives with ME/CFS so I have an understanding of the
condition and a motivation to increase awareness of it.
If you are interested in being involved and telling your story. Please
don’t hesitate to get in touch
Gavin McGregor
0212774788
gavmc23@mac.com
https://www.gavinmcgregor.com
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.
Dr Vallings to speak in Hamilton
Dr Vallings is speaking in Hamilton at the Methodist Church, corner of Normandy Ave and Bader St, Melville, Hamilton 10.30 to 11.30 on Thursday 13th August 2020.
Please Register by phoning Tracey on 07 8344745 or email tracey@mswaikato.org.nz.
Please arrive at 10.15 for a prompt start. Morning tea provided. A gold coin koha/donation will be greatly appreciated.
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
