Believing Chronic Fatigue – Living with Long Covid, ME/CFS (Myalgic Encepholomyelitis) and Hard to Diagnose Chronic Illnesses (223)

Believing Chronic Fatigue – Living with Long Covid, ME/CFS (Myalgic Encepholomyelitis) and Hard to Diagnose Chronic Illnesses (223)

The 2020 COVID-19 pandemic has had lasting effects on our world – one of the most difficult being long COVID, which has shed light on chronic illnesses worldwide such as ME/CFS…

In this episode, Ann and Sue share their research as well as personal experiences as caregivers for those with the illness and discuss the stigmas, invisibility, psychology of denial, support in advocating for your health, discussion of how to be a supportive caregiver, and secure relating in regards to chronic disease.

“…the notion is to come to accept something you might not have chosen, and strive to find peace with where you are at now … It’s not necessarily about getting back to where you were. It’s about growing from where you are today.” – Sue Marriott Time Stamps for Long Covid and ME/CFS

00:05 – Information about the May Modern Attachment Conference

7:55 – The difference between the names Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

12:21 – How we use attribution error in coping with long COVID

19:04 – Understanding deep fatigue post-infection and the effects

24:42 – Markers of long covid

32:39 – Touching base with Westernized culture stigmas

34:37 – Impactful ways to emotionally support someone struggling with chronic illness

39:17 – The power in being able to tap in with our bodies

42:11 – Discussion of the book “Grappling with Cure” by Eli Clare

44:15 – Important reminders on taking your medical care seriuosly/advocate for yourself

Resources for today’s episode Long Covid

Brilliant Imperfection: Grappling with Cure by Eli Clare – A book Sue has been using as a resource for understanding and supporting chronic illness

The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Samir Boulazreg, Samir and Rokach, Ami – NIH Article

Post-Exertional Symptom Exacerbation (PESE) – Long Covid Physio

A discovery in the muscles of long COVID patients may explain exercise troubles – NPR

Controversies related to chronic fatigue syndrome – Wikipedia article

ME/CFS Research Published 26 December 2023 – 1 January 2024 – The ME Association

The psychological impact of COVID-19 on the mental health in the general population – National Library of Medicine, Oxford University Article

A Discussion on Secure Relating & Chronic Illness (223) – Transcripts

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We support mental health access to those traditionally left out of mainstream healthcare and use a portion of the income we receive from corporate sponsors to do just that! We can only do that with the help of our Patrons – joining as a TU Neuronerd Podsquad premium subscriber, you support this mission and get a dedicated ad-free feed plus occasional very cool and unique study opportunities, reading groups and who knows what else may come! We invite you to join our community. Click here to join! And of course, our book is also a great resource – it’s for professionals and life-long learners of all kinds. If you’ve read it we’d love to hear from you and if you support it, PLEASE leave a review on either Amazon or Goodreads. Tk you!!

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