In parliament house in Canberra yesterday, members of federal parliament took the time to listen to world renowned scientists and their ground-breaking findings that explain the debilitating disease myalgic encephalomyelitis, a type of chronic fatigue syndrome. The event focused on a presentation by Griffith University Professors Don Staines and Sonya Marshall-Gradisnik.
The turnout was particularly impressive given the leadership turmoils occupying the headlines and the minds of so many people working in the building. Jokes were made at the beginning and end of the event, confirming that Malcom Turnbull was still the Prime Minister.
The event was hosted by the new Parliamentary Friends of ME/CFS, founded by Greens Senator for Western Australia, Jordon Steele-John and co-chaired by Labor Senator for Queensland, Claire Moore and Liberal Senator for Tasmania Jonathon Duniam.
A range of parliamentarians from across the political spectrum, in both the House of Representatives and the Senate attended, as did policy advisors, members of the academic community, patients and advocates.
Senators Andrew Bartlett, Greens for Queensland; Slade Brockman, Liberal for Western Australia; Jonathon Duniam, Liberal for Tasmania; Jordon Steele-John, Greens for Western Australia; and Claire Moore, Labor for Queensland all attended.
From the House of Representatives, Liberal Member for Dunkley, Chris Crewther; and Labor Member for Canberra, Gai Brodtmann attended. Up to a dozen policy advisors attended from a range of parliamentary officers.
Jordon Steele-John welcomed everyone to the event. Jonathon Duniam introduced the speakers. Don Staines began Griffith’s presentation with some poignant insights into why their research mattered. “It is an honour to present to the representatives of the people, our novel scientific findings” he said. ME/CFS is “a very silent illness, because people are often unable to represent their needs”.
In unpacking the approach of the National Centre for Neuroimmunology and Emerging Diseases, he explained that “the existing science is not yet up to it.” “Patients have experienced extreme stigma and discrimination associated with the lack of known biology”. The aim of the centre’s work was to reduce this stigma by demonstrating the biology of the disease, developing a diagnostic test and identifying therapeutic drugs to manage the disease. He spoke plainly and eloquently for all to understand the gravity of what he was saying.
Sonya Marshall-Gradisnik went through a summary of all the research they have done in three years, explaining what and how they have come to understand the pathology of the disease.
First, they identified a family of genes significantly associated with the disease. Then, they tested these genes, the family of TRPM3 markers, for changes in expression between healthy controls and patients with ME. This gene is found in cells in the central nervous, cardiovascular, digestive, endocrine, immune and excretory and other systems in the body. In this way, they came to understand how so many systems in the body are affected by the disease.
What they found was that the cells containing TRPM3 showed a reduced capacity for the transfer of calcium ions between and within the cells. Calcium ions are vital to cellular energy transfer and proper cell function.
By using gold standard technological processes, they measured the amount of calcium that is stored by and circulated in particular cells. Again, in ME patients, these rates were significantly lower than in healthy controls. This science would explain why many patients describe their experiences as like running on a faulty cellphone battery that doesn’t charge properly and never fully recharges.
TRPM3 are threat receptors. They are triggered by infections (bacterial or viral), perfumes or other chemicals, cell stretching or stress, temperature variation and a range of other factors. This not only explains some of the onset factors for ME, but also some of the triggers patients experience after contracting the disease.
Don Staines explained that, given these findings, we could see that “recommendations to exercise patients are wrong” because it only places greater demand for calcium ions in the cells. This also explains why patients who meet the diagnostic criteria defined in the Canadian Consensus Criteria or the International Consensus Primer would in fact be worsened by a regime of Graduated Exercise Therapy. While patients who experienced the symptom of chronic fatigue without meeting these criteria may experience some improvement.
As for recommendations to treat patients with Cognitive Behaviour Therapy, Sonya Marshall-Gradisnik said she was “not aware of any psychological treatment that can effect calcium ion transmitters”.
Attendees were keen to know what policy makers could do to help researchers and patients. The sample sizes of the studies undertaking so far were about 200 people. To allow all Australian patients to contribute to the study (and vastly increase the value of the science by increasing the sample size), the centre will need $13 million. So far, they have raised half of this money through philanthropic donations. They asked the parliamentarians to support federal government funding for the remaining $6.5 million.
Recommendations also came to ensure government policies and guidelines are updated to account for this research, helping reduce the personal, financial and social burden of the disease on patients. While no specific mention was made of the National Disability Insurance Scheme or Disability Support Pension, ongoing discussions will address some of these issues. There was, however, an explicit call to remove GET and CBT recommendations from policies including guidelines of the Royal Australian College of General Practitioners.
While Don and Sonya were loathe to provide timelines on their advances for diagnostic testing and therapeutic drugs, they explained they were working with a leading Australian pathology service provider with a timeline of three years for both projects.
At the end of proceedings Claire Moore closed the event with a call to action for policy makers while paying tribute to the good work that Scott Ludlum had done in this space. Significant networking between parliamentarians, policy advisors, other researchers and patients occurred before everyone dispersed. Overall, it was an incredibly worthwhile event and impressively successful, especially given the amount of attention being diverted for leadership contentions within the government.
12 thoughts on “Parliamentarians learn about ground-breaking science on debilitating neurological disease”
Thank you Susan for providing the detailed report of the meeting. It is useful to know which MPs and Senators attended so that they can be thanked.The networking following the presentation sounds promising. Policy makers are increasingly taking our disease seriously. We need to keep in mind that both Claire Moore and Andrew Bartlett are retiring at the next election.
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A great detailed summary of NCNED’s progress and why we need new guidelines for ME/CFS. Thank you Susan.
Thank you for this very comprehensive debrief of the meeting. No wonder you’ve crashed Susan, sending you best. I did send a request to the then Health Minister & hope that one of his policy advisers was in attendance. Although I don’t know him personally we have an important mutual connection.
That was so exciting. Thank you Susan for attending and explaining how things went. I would not have known about this without your post and it’s very encouraging to know politicians are hearing about our battle
Thank you Susan for attending this presentation by Griffith University Professors Don Staines and Sonya Marshall-Gradisnik, in parliament house Canberra, and for sharing the report.
I have me/cfs…genetic testing “saved” me (holisticheal.com). Since M.E. is brain inflammation, consider the work by Dr.Dale,Breseden,MD (bk; The End of Alzheimers) and his ReCODE protocol. My mother had dementia, and now me. THESE THINGS CROSS OVER.
This seems to confirm the work of Prof Martin Pall done almost 15 yrs ago now but from a different angle. [For Prof Pall’s work see – https://web.archive.org/web/20150315143107/http://www.thetenthparadigm.org:80/index.html%5D
Thank you for this report, Susan.
For the International Edition of SNOMED CT, Chronic fatigue syndrome and its Synonyms terms are now located under the parent: Disorder of nervous system. This change was implemented for the July 31 release. The Australian National Edition of SNOMED CT will incorporate this change on December 30.
Excellent news and blog.
Low sample sizes has always been the main issue with the NCNED team’s work, and increasing the sample sizes is the most important step they need to take, and that means increased funding. So it is very good to read this bit:
“Attendees were keen to know what policy makers could do to help researchers and patients. The sample sizes of the studies undertaking so far were about 200 people. To allow all Australian patients to contribute to the study (and vastly increase the value of the science by increasing the sample size), the centre will need $13 million. So far, they have raised half of this money through philanthropic donations. They asked the parliamentarians to support federal government funding for the remaining $6.5 million.”
Thank you to all who organised this, and attended. The cross-party political involvement and support is particularly encouraging. 🙂