We are thrilled to share some exciting news with you! Thanks to the incredible generosity of the McCusker Charitable Foundation, and their commitment to advancing medical research, we are embarking on an unprecedented journey that promises to revolutionize the care of people with ME/CFS and Long COVID by Australian General Practitioners. We take immense pride in announcing the gracious gift of $500,000 to Open Medicine Foundation Australia Limited (OMFAL) to fund the initial phase of Dr. Chris Armstrong’s ground-breaking personalized treatment program. As an international extension of the Open Medicine Foundation, OMFAL plays a vital role in our global, non-profit effort to understand, manage, and ultimately cure ME/CFS, Long COVID, and related diseases. We are proud to acknowledge the remarkable work of the Melbourne ME/CFS Research Collaboration, directed by esteemed Christopher W. Armstrong, PhD. The primary focus of Dr. Armstrong’s personalized treatment program is to provide a tool that clinicians can use to speed up the process of matching successful treatments to individuals with ME/CFS and Long COVID. By reducing the guesswork that often prolongs treatment decisions, we envision a future where patients can experience relief and healing faster than ever before. Key Aspects of the Research Program: 1. Partnering with GPs to Target Treatments: We understand that the uncertainty surrounding treatment options can be distressing for patients and their families. By studying how clinical and biological factors can predict successful treatment outcomes, we will work with medical practitioners to develop a tool that they can use to help patients. 2. Improving Quality of Life: By providing a tool that enables clinicians to provide patients with targeted treatments, we expect to increase the potential for significant improvements to quality of life. These changes will benefit individuals and their families, and also alleviate the stress on our healthcare system. 3. Clinician Education and Implementation: An essential feature of this program is to educate clinicians about accessing and effectively implementing this tool within their practices. We believe that sharing knowledge and empowering medical professionals will lead to widespread benefits across the medical and patient communities, both within Australia and globally. We’d like to emphasize that the pioneering work being done in Australia is not confined by geographic boundaries. The innovative treatment programs we’re developing here have the potential to be replicated and adapted worldwide. This means that the fruits of our research could soon provide hope for ME/CFS and Long COVID patients globally, promising a brighter, healthier future for all. We are incredibly grateful to the McCusker Charitable Foundation, who have the vision to recognize the potential of this transformative research. Their remarkable commitment doesn’t end here; they have pledged an additional $500,000 for the following two consecutive years if the research progresses well. As we embark on this journey, we promise to keep you informed every step of the way. Your contributions, whether big or small, make a profound difference in achieving our collective goals. https://www.omf.ngo/McCusker-gift/
Sounds interesting, but what treatment might he be referring to I wonder. I hope they will reveal a lot more information. Whoever wrote the announcement swallowed the superlatives thesaurus. Just in the first couple of paragraphs we have: thrilled, exciting, incredible, unprecedented, revolutionize, immense, groundbreaking... That's a lot to live up to.
It says treatment plan, which is probably a mix of all sorts of medications/supplements/health + diet advice, similar to what they've always done at the Stanford Clinic.
And.. the last 3 paragraphs superlatives include: innovative, pioneering, transformative, remarkable, profound…. this sentence especially seems to stick in my craw, “This means that the fruits of our research could soon provide hope for ME/CFS and Long COVID patients globally, promising a brighter, healthier future for all." That is going to be a very impressive "tool".
Personalized treatment trials We will partner with a small team of clinicians in Melbourne to recruit 200 patients for this trial.* The plan? Collaborate with clinicians to monitor the biological effects of prescribed treatments. The understanding of successful and unsuccessful treatments will be honed by analyzing biological changes in response to these treatments. Patient reports, objective clinical measures and thousands of biomarkers will be assessed for each treatment that is tried. By analyzing and categorizing biological changes that occur in response to treatments, we can better understand why these treatments might be effective or ineffective. We can then determine the type of people for which certain treatments might be effective. The more people we study and data we gather, the better we can predict which treatments will work best in the future. We expect this project to take approximately 3 years from the initial recruitment. On average, each patient will undergo testing for 3+ months and will go through 2+ treatment trials, including 3 clinic visits (which will include MRI/PET scans) and the analysis of hundreds of collected biofluid samples.
It seems to be increasingly common, including in how politicians speak. It's common in documentaries too now, which I get so fed up with that I switch off.
It's a pity it's being wrapped up in all these superlatives, when actually it sounds like a very interesting and potentially productive way to go about researching the physiological effects of different treatments on pwME.
Reading that, it sounds less like treatments and more like a decision tool. Could it just be a database with details of patients who are trying various treatments and records of their various outcomes, with an interface where GPs can say 'I have a 45 year old female with Covid-19 onset ME/CFS and muscle pain', what treatments have helped people like her? That quote suggests that there are treatments that provide relief and healing, it's just hard to know which patients need which treatment. Unless I missed something, we are nowhere near that relatively happy state of affairs. Also, as much as I like Chris Armstrong, I don't think we've seen much evidence of engagement with people with ME/CFS in terms of planning and implementing research from his team. It's perhaps even more of a problem that, when I last looked, which admittedly was a while ago, OMFAL did not have a single person with self-declared ME/CFS on their board. That contributes to the idea that people with ME/CFS are not rational and are not capable of contributing to decisions made about investigations into their disease, and so we should just wait while others do the decision-making for us. I think OMFAL should be doing much much better on the 'nothing about us without us' idea.