Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

General Practitioner Recruitment

Myalgic Encephalomyeltis / Chronic Fatigue Syndrome (ME/CFS) is a multisystem, chronic and complex disease (msCCD) that, pre-COVID, affected around 230,000 Australians[1]. In 2020, the direct medical cost was estimated at $5.295b, or $23,022 per case per year, and the aggregate community cost at $14.5b per year[2]. Recent studies indicate that a further 77,000 Australians are estimated to experience ME/CFS-like symptoms after two years of Long COVID[3].

OMF also supports the Bateman Horne Medical Education Resource Center, which is dedicated to educating healthcare professionals to expand their awareness, knowledge, diagnostic, and treatment ability for the benefit of those with multi-system Chronic Complex Diseases (msCCD) such as ME/CFS, Long COVID, FM, post-viral syndromes, and related comorbidities. You can find medical resources and ECHO training programs here.

Research Context

The Melbourne ME/CFS Collaboration, established at the University of Melbourne’s Bio21 Institute, is directed by Dr. Christopher Armstrong. This  research collaboration seeks to characterise the unifying biological pathways of ME/CFS that relate to the shared disease experience between patients while also understanding each patient’s unique biology that creates variation in disease experience and severity.

In the next few years, Dr. Armstrong’s team aims to:

·       Develop a tracking app to objectively measure symptom severity on any single day to be used as an objective measure of disease in ME/CFS and Long COVID

·       Begin small-scale clinical trials (repurposing drugs or medical foods) using our personalised precision approach in conjunction with the guidance of clinicians.

This research is supported by Open Medicine Foundation, the world’s largest privately funded organisation. OMF’s mission is to fund and facilitate open, collaborative research into chronic, complex diseases so that patients will be able to live their lives more fully. With more than 200 researchers around the globe investigating aspects of the disease at a molecular, cellular and system level, and with a research agenda set by a highly credentialed and renowned 19-member Scientific Advisory Board, OMF’s aspiration is that these discoveries will establish biomarkers and orient the development of diagnostic tools for testing and treatment, on the pathway to a cure.

How You Can Help

While we fully intend to collaboratively co-design the research program with GPs, our precision medicine approach relies on accurate data from as many patients as possible. As such, we propose that:

  • GPs will be asked to identify patients with ME/CFS or Long COVID who would be open to participating in these studies.
  • Research team will provide a home sampling kit that the patient will be able to use to self-sample, while taking the treatments that the GP has recommended. The samples collected will be analysed for over 1,000 markers using advanced analytical platforms to produce a large amount of biological data that will correlated with the patient’s symptoms/outcomes. This data will be curated, and the GP will be invited to participate in the data interpretation and research (if desired by the GP).
  • Participating patients will be asked to complete symptom surveys via mobile application, wear a heart rate sensor, and collect their own samples of urine and blood. These samples will be taken weekly, fortnightly, or monthly depending on what we are tracking in each participant (their response to treatment, the changes in disease over time, etc).

Some patients may be invited to undertake whole blood samples for genome testing and cell-based assays, which would need to be collected by a phlebotomist. 

We are open to discussing short- and long-term collaborations. For more information, please contact Chris Armstrong at christopher.armstrong@unimelb.edu.au.

You can find out more about the Melbourne ME/CFS Collaboration and current projects here.

[1] Lim, E. J., Ahn, Y. C., Jang, E. S., Lee, S. W., Lee, S. H., & Son, C. G. (2020). Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Journal of Translational Medicine, 18(1), p. 1.

[2] Close et al., 2020, p. 5 report aggregate and individual case costs per year; extrapolated by prevalence.

[3] CDC, 2022, report that 19% of people who contract COVID progress to long COVID and, of those, according to a 7 month prospective study of 3762 COVID patients, 86.7% experienced PEM and other ME/CFS symptomology (Davis et al., 2021, p. 1). After 2 years, symptoms remain in between 2-4% of patients (Hickie et al, 2006, p. 3). As at 12 September, 2022, there were 10,112,229 cases of COVID-19 in Australia.

OMF Australia accepts donations of Cryptocurrencies

Make the most of your donation by donating your Bitcoin, Ethereum, and other cryptocurrencies directly to OMF Australia rather than selling and donating the after-tax proceeds.

  • Your tax deduction will be equal to the fair market value of the donated cryptocurrency (as determined by a qualified appraisal).
  • Donors should consult with a tax advisor for properly recording this donation on a personal tax return.

OMF Australia can accept cryptocurrency donations of any amount. 

Donating cryptocurrency is a non-taxable event, meaning you do not owe capital gains tax on the appreciated amount and can deduct it on your taxes. This makes Bitcoin and other cryptocurrency donations one of the most tax-efficient ways to support your favorite cause. If you want to learn more about how donating crypto can lower your taxes, check out thegivingblock.com/faq.

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