Thank you for helping us to not feel so alone. There are millions of people with ME/CFS and yet medical professionals make us feel like we are an oddity.
Haven’t listened yet, but just started reading How to Live Life with a Chronic Illness by Pippa Stacy in which she mentions being involved with the Chronic Illness Inclusion Project. I am so sorry that funding fell through for it. 😢
Bless all these activists fighting for people too sick to fight a medical system that has wronged us. I feel especially empathic for young people suffering. I was 38 , and have had it 30 years. It's so brutal and debilitating, very hard to imagine unless you have it. I'm flat in bed trying to muster the strength to shower. It may not happen today. We take our health for granted until we lose it.
00:05 Introduction to Catherine Hale and the Chronic Illness Inclusion Project 02:27 Catherine Hale's chronic illness journey from dancer to severe ME patient 07:02 Transition from a life on the sidelines to a fulfilled life despite chronic illness. 09:23 Daily struggle with managing energy levels and symptoms 13:41 Creating opportunities for people with chronic illness 15:52 Shift from focusing on personal recovery to improving life within limitations by changing the world around. 20:03 Absence of representation for people with chronic illness in big charities 22:00 Establishing a voice for the chronically ill community 26:13 Funders lacked understanding of disability and long covid. 28:15 The term 'energy limiting condition' has become an important umbrella term for various conditions. 32:20 Defining energy limiting conditions for better disability recognition 34:17 Fatigue as a disabling factor in chronic illnesses 38:20 Similar day-to-day experiences of energy impairment among different chronic conditions 40:16 Post-exertional malaise is unique and should not be equated with everyday fatigue. 44:20 Advocating for redefining social care assessments 46:25 Flawed understandings of disability in social care and Social Security assessments. 50:08 Discussing the challenges in understanding the experience of chronic illness and disability. Crafted by Merlin AI.
Thank you for helping us to not feel so alone. There are millions of people with ME/CFS and yet medical professionals make us feel like we are an oddity.
Haven’t listened yet, but just started reading How to Live Life with a Chronic Illness by Pippa Stacy in which she mentions being involved with the Chronic Illness Inclusion Project. I am so sorry that funding fell through for it. 😢
3 lovely faces:) Thank you.
Thanks, Catherine! Thanks, Dan! 💙💙💙
Bless all these activists fighting for people too sick to fight a medical system that has wronged us. I feel especially empathic for young people suffering. I was 38 , and have had it 30 years. It's so brutal and debilitating, very hard to imagine unless you have it. I'm flat in bed trying to muster the strength to shower. It may not happen today. We take our health for granted until we lose it.
00:05 Introduction to Catherine Hale and the Chronic Illness Inclusion Project
02:27 Catherine Hale's chronic illness journey from dancer to severe ME patient
07:02 Transition from a life on the sidelines to a fulfilled life despite chronic illness.
09:23 Daily struggle with managing energy levels and symptoms
13:41 Creating opportunities for people with chronic illness
15:52 Shift from focusing on personal recovery to improving life within limitations by changing the world around.
20:03 Absence of representation for people with chronic illness in big charities
22:00 Establishing a voice for the chronically ill community
26:13 Funders lacked understanding of disability and long covid.
28:15 The term 'energy limiting condition' has become an important umbrella term for various conditions.
32:20 Defining energy limiting conditions for better disability recognition
34:17 Fatigue as a disabling factor in chronic illnesses
38:20 Similar day-to-day experiences of energy impairment among different chronic conditions
40:16 Post-exertional malaise is unique and should not be equated with everyday fatigue.
44:20 Advocating for redefining social care assessments
46:25 Flawed understandings of disability in social care and Social Security assessments.
50:08 Discussing the challenges in understanding the experience of chronic illness and disability.
Crafted by Merlin AI.
Thanks
👍