In this session we learn about the joint research project by Dragon Claw (now MyFlareUp) and Community and Patient Preference Research (CaPPRe).
Dragon Claw’s Dr Charmaine Jones explains that she noticed many people with inflammatory autoimmune conditions in our autoimmune community seemed to not have their disease optimally controlled. The goal of the research was to understand patient’s treatment experiences and preferences in order to see what things encourage or discourage patients from starting new treatments.
Dr Daniel Lewis, rheumatologist and long-time supporter of Dragon Claw/MyFlareUp, discusses how people living with inflammatory rheumatic conditions can better manage their health when treatment options are limited or when newer biologic medicines are not accessible.
Drawing on decades of experience in rheumatology, Dr Lewis explains how treatment for conditions such as rheumatoid arthritis has evolved, while recognising that medication does not always completely control disease activity. He highlights the important role that people can play alongside their medical care by developing practical strategies to support their physical and emotional wellbeing.
The discussion explores managing expectations, reducing stress and negative thinking patterns, and using approaches such as meditation, gentle regular exercise, good sleep, supportive nutrition and talking openly about your condition. Dr Lewis emphasises that while living with ongoing inflammation can be challenging, there are still meaningful steps people can take to support themselves and improve how they manage day-to-day life.
Massage is often associated with firm pressure, working deeply into muscles as the therapist tries to correct a particular problem. However, for people living with cancer, autoimmune disease or other complex health conditions, this approach may not always be appropriate.
Founder of Oncology Massage Global, Eleanor Oyston (MMA, BTFA, ATMS. Retired), a passionate advocate for the benefits of oncology massage, says
“In the past 26-years, I’ve massaged numerous clients with complex medical issues – none as confronting as those with chronic pain and autoimmune disease with hypersensitivities, including neurodegenerative disorders. When a person’s nervous system is disrupted for any reason and natural healing ceases – complex neuronal pathways break down, and our bodies need help.”
Eleanor explains that massage does not cure the incurable, but can relieve symptoms by reducing stress and anxiety in the body.
“Since 2004, a growing body of research continues to confirm the benefits of massage in many forms for people with chronic pain. Massage is an ancient art, and in recent times remedial massage professionals have adapted massage techniques to provide comfort massage to people with cancer.”
Eleanor explains that cancer survival statistics were poor twenty years ago and that side-effects of treatment was debilitating. Chemotherapy was in its infancy, and radiation machines were crude, leaving lifelong negative consequences for the patient. Autoimmune diseases were rare and almost impossible to diagnose, and chemicals like ‘round-up’ were considered safe, and Motor Neuron Disease (MND) was almost unheard of.”
Eleanor laments how the world has changed and that today, under the label of Oncology Massage – a safe and gentle massage using slow strokes with established pressure levels – is being offered to patients in cancer centres around the world.
A gentler, more responsive approach to massage
With specialised training, a massage therapist can be taught to safely massage clients with complex health issues, with medical devices, and with surgical challenges, like scars.
A major part of this approach is remaining attentive to the person throughout the treatment. Health and comfort levels can change quickly, so therapists are trained to notice the body’s responses and adjust the pressure, positioning, and techniques as needed.
Kate Butler, a Remedial & Oncology Therapist and Facilitator at Oncology Massage Global, describes oncology massage as an approach that takes the person’s complete health situation into account, rather than trying to ‘fix’ the body or challenge it through intensive treatment, the therapist will respond to what the person needs in a particular moment.
Kate explains “A major part of this approach is remaining attentive to the person throughout the treatment as health and comfort levels can change quickly, so therapists are trained to notice the body’s responses and to adjust pressure, positioning, and techniques as needed.”
Kate talks about the importance of whole-handed touch and says “Although a therapist may work more specifically on a particular area, time is spent at the beginning and end of the treatment using calming, supportive touch to help settle the body. The purpose is not to create inflammation, or place further demands on a body that may already be working hard – it is to provide comfort, to calm the nervous system, and to support the body’s own healing processes.”
Training by recognised massage associations
In Australia there are three recognised training organisations that offer courses based on medical research, and that are recognised by major massage associations like Massage Myotherapy Australia (MMA) and Bowen Therapy Federation of Australia (BTFA), and work closely with centres of excellence like Chris O’Brien Life House in Sydney, Peter Mac Cancer Centre in Melbourne and Memorial Sloan Kettering CC in New York.
Courses are on-line with face-to-face elements and all Oncology Massage teachers offer ongoing support and are reference points for organisations like Breast Cancer Network of Australia and Cancer Council Australia.
To learn more how safe touch supports your body visit Oncology Massage Global.
To explore training options visit the Institute of Oncology Massage website.
In Robin Mallery, Registered Nurse, has been teaching food as medicine for decades and speaks passionately about the effect food can have on our wellbeing. A vegetarian for 48 years, Robin began her journey by learning everything she could about plant foods, which she describes as some of the most powerful foods for health and wellbeing.
In this talk, Robin discusses the benefits of plant foods and the micronutrients they provide. While vitamins and supplements may be of interest, Robin explains that they do not come close to the benefits of regularly incorporating plant foods into your diet. She stresses that she is not promoting a plant-only diet, but encourages people to understand the benefits of plant foods and include more of them in everyday meals.
Robin also shares how spending around 90 minutes a week preparing foundational food bases can make meals easier to manage throughout the week. Her talk focuses on making food preparation calmer, easier and more sustainable, especially for people managing fatigue, pain or limited energy.
Dr Judith R. Davidson, a psychologist with clinical work and research focused on sleep disorders, talks to us about sleeping and pain with inflammatory autoimmune conditions. She discusses sleeping in the midst of flare-ups and symptoms that can make it hard to sleep properly, and gives us some tips and resources that can help.
Dr Helen Driver, a prominent Somnologist, registered Polysomnographic Technologist, and past-President of the Canadian Sleep Society, talks to us about sleep testing and therapy. While busy with her studies many years ago, she shares with us a personal story that compelled her to further her studies on the subject. Dr Driver discusses sleep testing and what happens during a sleep study, and talks to us about sleep aids and the different type of therapies for sleep.
