Panel of person with Severe Myalgic Encephalomyelitis (
#pwSME), mother of
#pwSME, and a
#pwME who help out her friend with severe ME share their lived experience, thoughts and wishes. === Parliament House Lived-Experience Videos
https://mecfssa.org.au/resources/parl... Kindly contributed by ME/CFS South Australia
https://mecfssa.org.au/ ===
Chair: Nicole Roudenko Nicole is an Immunology specialist, worked as a senior scientist in diagnostic pathology and research at several hospitals, focusing on immunophenotyping hematopoietic malignancies, HIV, and immunodeficiencies. After 20 years in science, she retrained in occupational therapy, graduating with first-class honours in 2023, and now works at OccAssess Pty Ltd. Her honours research on severe ME inspired her to enhance healthcare services for individuals with ME. Nicole is dedicated to destigmatizing ME through education for patients, families, healthcare professionals, and the community, advocating for timely diagnoses and meaningful support for those affected.
Panel: Ketra Wooding Ketra Wooding is a former professional yachtie who in 2011, was diagnosed with severe Myalgic Encephalomyelitis (ME). She spent 10 years living in aged care - which she credits with saving her life. Now as an ACA-registered counsellor, Ketra founded her own counselling business to support those dealing with chronic illness. She also volunteers with Lifeline, finding purpose and connection in giving back when she can. Ketra still needs to spend most of her time resting to avoid relapsing and she needs a lot of daily support, but things are looking brighter with the help of her toy poodle Bindi and careful heart-rate pacing.
Helen Donovan & Alem Matthees Helen is Alem’s fulltime carer since 2016. She has watched his weight plummet and due to his sensory sensitivities, she is unable to give her son a cuddle. She can only communicate with Alem with short conversations, and together they have developed their own sign language. As a mother of a child with severe ME she experiences daily agony witnessing Alem suffer beyond comprehension. She is frustrated at the lack of support Alem has received from some medical professionals. Alem is 44 years of age, and he is now bedridden. After catching chickenpox at 15, he never fully recovered and developed chronic fatigue syndrome (CFS). Despite years of tests and treatments, no effective treatment was found. In 2011 he started on the PACE trial. Along with other ME patients he worked under the FOI to get the Queens University to access the true findings of the PACE trial for which they were successful. During that time some people with ME had committed suicide and others had passed away from the condition. By February 2016, Alem became extremely sensitive to light, sound, and touch and could only consume smoothies. He had to move back home with his parents who provided fulltime care. For a few years Alem wanted to know any news either about ME or news in general. Today he lives in a dark room, unable to talk or engage with the world.
Sandra & Chantal Sandra developed Moderate ME in 2012 & could not return to work. Focus is on managing ME symptoms by pacing, dietary choices, GP guided use of supplements, LDN, gentle yoga, regular acupuncture & Bowen Therapy treatments. The online ME community brought awareness of millions of other sufferers which fuels her to share “the information she wished she’d known earlier”. A good day may allow up to four carefully used hours for all tasks of daily living. Chantal is a friend from healthier days. She had Mild ME when a series of housing stressors caused her to decline into Severe ME & is now mostly bed bound.
