A New Decade in Arthritis Research - What I Learned as a Patient Attending Canada's 2020 Scientific Meeting

March 3, 2020

 

 

I was recently lucky to attend on sponsorship from Arthritis Research Canada the annual scientific meeting for the whos who in arthritis health care and research, in beautiful Victoria British Columbia. This conference is actually a 3 in one conference, hosted by The Canadian Rheumatology Association (CRA) and Arthritis Health Professionals Association (AHPA). 

 

New this year was the Canadian Arthritis Research Conference presented by The Arthritis Society in partnership with the Canadian Rheumatology Association (CRA) and CIHR-IMHA. The conference aimed to bring together allies in the arthritis ecosystem - trainees, people living with arthritis, national and international scientists and clinicians, and others - to explore perspectives, advance knowledge and enhance Canadian leadership in the world of arthritis and rheumatic diseases. Through collaborative presentations andgroup conversations, the programs collectively highlighted current research and approachesto pain, inflammation and tissue repair, and the integration of open source data (the kindof data which is open for anyone and everyone for access), in clinical applications. Some ofthe presenters included the Arthritis Research Canada crew that I have worked closely within their studies, including my physiotherapist, so it was nice to attend and support theirwork.

 

There is some seriously incredible work being done in Canada when it comes to arthritis
research; how it also highlighted the need to continue with life changing studies, the
challenges and how it's growing along with technology along with the needs of patients - the
patient voice is being heard, although I would like to see more patient presence at this
conference, in comparison. There was more at ACR19 - What really amazed me was
how many people I met who lived with a form of arthritis and work in research or health
care.

 

I have been involved with arthritis research now for 2 years, I started by joining the Arthritis Patient Advisory Board for Arthritis Research Canada (APAB). I was recruited by one of their members when I attended a focus group at the Vancouver CRA & AHPA meeting in 2018. Since then I have become a dedicated participant in as many studies as I can for my diseases and duties as a board member - which is currently full but always looking for participants in research studies. It has been an amazing experience to learn about my illness and give back to my community, it has been a great way for me to grow as a patient. One of the best ways to fight a serious illness is through education - you can find a lot of that through these organizations and calls for participating in research in Canada:

 

CATCH

Arthritis Research Canada

The Arthritis Society

Canadian Rheumatology Assocation

Arthritis Health Professionals

Arthritis Alliance

Cassie and Friends

Pain BC

Canadian Arthritis Patient Alliance 

JointHealth/Arthritis Consumer Experts

Arthritis Broadcast Network

ArthritisBC+Me

Bone and Joint Canada

Canadian Institute of Health Research

UBC Rheumatology

 

Click on the links above to go to their websites,be sure to follow their social media channels and subscribe to their newsletters. 

 

The conference was a total of 5 days long and there is no way I can recap all of it, nor do I come from a scientific background but as a patient there were certain things that really stood out to me from the lived experience and listening to the needs of my community of arthritis patients - what I can start to implement on my daily life in fighting rheumatoid arthritis and what I can tell my community. 

 

I attended three workshops on topics Microbiome, Medical Cannabis and how to deal with the wait times in an arthritis clinic, which is a huge issue as there aren't enough doctors to treat the growing amount of Canadians living with arthritis, especially in remote areas. Wait times in Canada are an issue but it looks like there is hope with them developing online programs and clinics utilizing a rheumatology nurse to take the load off the doctors and doctors traveling to remote areas. This is important because research is showing better outcomes when patients receive treatment faster and stick with it. Fascinating to watch healthcare grow with technology. 

 

What role does the microbiome play in a healthy diet? 

 

Tim Spector - Spector is professor of genetic epidemiology and director of the TwinsUK registry at King's College, London. According to Thomson-Reuters, he is in the top 1% most cited scientists. He is a specialist in twin studies, genetics, epigenetics, and microbiome and diet. It was an incredibly informative workshop to sit in on. If you are curious about what he has to say click here for a talk he recently gave on what role the microbiome has to do with the gut. 

 

 

My take away as a patient and advice to others is to eat 30 plants a week, about 5-6 a day is my goal, nuts and seeds count as plants too and are high in polyphenols which microbes use as fuel to grow. Eat more kefir, kimchi and drink some kombucha if you are looking to improve your microbiome. Double your fibre and the Mediterranean style diet is great to follow but no one diet is perfect, everyone is different so what works for one may not work for another - and will not cure you. The best alcohol to drink is red wine, olive oil is the best oil to use and McDondalds is still incredibly bad for you, you need to avoid processed food, butter and red meat. To find out what really works for you, see a registered dietician, linked is one living with rheumatoid arthritis. 

 

My diagnosis of rheumatoid arthritis has taught me to view food as a medicine and there are so many delicious healthy options out there. 

 

 

 

Fatigue

 

Living with arthritis I know that fatigue is a massive issue for me and many others. Often people think pain is the worst symptom for my RA but some days I find myself cursing at the fatigue more. I saw a few presentations focused on fatigue and what is crucial to treat it is losing weight and stop smoking. Your medications work better, you lower inflammation, it fights depression and attends to so many other aspects of living with rheumatoid arthritis. Rheumatologists however have a hard time prescribing what is right for patients to lose weight. I found valuable resources through education sessions taught by The Arthritis Society at the Mary Pack Arthritis Center when I was looking to learn to exercise and lose weight with rheumatoid arthritis. I furthered that information by participating in Arthritis Research Canada's studies and reading from reliable sources like Creaky Joints or Healthline

 

 

I would like to personally back up this research having lost 60 lbs which improved my rheumatoid arthritis tremendously. It didn't cure me but it sure helped significantly in how I live a better life today with rheumatoid arthritis. 

 

For further information about this please watch Cheryl Koehn from Arthritis Consumer Experts interview with Dr. Susan Bartlett from the University of McGill on her work with fatigue and inflammatory arthritis here. 

 

Medical Cannabis

 

I had the opportunity to interview for Arthritis Broadcast Network and attend a workshop by a rheumatologist/pain specialist from McGil Universityl about arthritis and medical cannabis. This is a topic I get asked a lot about and see frequently asked in arthritis communities - mostly does it work, what strains are best, does it reduce inflammation, what dosage to use, what is the fastest way to absorb it. 

 

Unfortunately, a lot of the questions patients have aren't being answered because there is
still a definite need for for more research in this field.
 
They are definitely trying to stress patients to purchase from a licensed professional due to
contamination of the product with heavy metals like lead. The fastest way to absorb is
through smoking but not recommended by rheumatologists because it is still smoking, so
it's not good for you. Some food for thought.

 

For more information I invite you to watch my interview with Dr. Mary-Ann Fitzcharles here.

 

For further information on medical cannabis in Canada click here.

 

My Message To My Readers

Become involved in research, recruitment is an issue but absolutely needed to get accurate results. Answers lie in research and change can only happen with your participation and fundraising.  There is hope. 

 

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