2019 International ME Awareness Day - Research

Approximately 20,000 individuals in New Zealand are currently diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a complex and debilitating neuroinflammatory illness.

The 12th of May is International ME Awareness Day. This year ANZMES (Associated NZ Myalgic Encephalomyelitis Society) is highlighting the remarkable progress made with research during this past year. Clinicians who treat this devastating illness, as well as researchers, feel that we may be very near an “eureka moment.” New researchers are increasingly being drawn into the field, having found that this complex illness has sparked their scientific curiosity.

One of the factors that has propelled this progress in research is the availability of new technologies and more sensitive instrument measures. Imaging studies have provided further evidence of widespread brain inflammation, and new technologies are also assisting ME researchers who specialise in the fields of immunology, genetics, epigenetics, metabolics, cardiopulmonology, and biochemistry. The advancements in the multidisciplinary field of ME research is contributing to the development of a more comprehensive understanding of this condition.

We are also drawing close to the identification of a blood biomarker that would enable clinicians to provide an earlier diagnosis for their patients. Teams at both Griffith University in Australia and Stanford University in the US are forging ahead with very promising possibilities in this regard and both have recently published papers on their findings over the past month.

https://www.pnas.org/content/early/2019/04/24/1901274116

https://www.ncbi.nlm.nih.gov/pubmed/31014226?

With the support of ANZMES and other organisations, New Zealand is making a significant contribution to these international research efforts. Professor Warren Tate, an academic in the Department of Biochemistry at the University of Otago, is one New Zealand researcher providing strong research on this condition, working in collaboration with researchers overseas.

https://www.otago.ac.nz/otagobulletin/news/otago699494.html

https://www.odt.co.nz/business/set-quest-treat-me

https://www.thestar.co.nz/digital-edition See Page 22 and 23

In addition, international research groups are also looking into using drugs for ME/CFS that are currently available for other illnesses and disorders. Several of these drug trials are underway at the present time.

While we are seeing great progress, we want to emphasise that much more research is needed. In order to achieve our goals, we need increased funding into the study of ME/CFS. This field has been traditionally under-funded in relation to the number of patients affected world-wide, both diagnosed and un-diagnosed. The economic and social impact of disability caused by ME/CFS in New Zealand is very significant, as is true in countries around the world. Our aim is to see that this catastrophic illness is one day relegated to the history books, as has been proving true with other illnesses, such as poliomyelitis.

ANZMES is the national ME/CFS organisation. We provide information, support and government lobbying for patients with ME/CFS, education for support groups, medical professionals and the general public, and investment into ME/CFS research.

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