#MEAction podcasts - Chronically complex

Sly Saint · Nov 15, 2022

If you’re new to myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS), we’re here to tell you that you are not alone. There are millions of others like you. At #MEAction, our mission is to advocate for people with ME to raise awareness, educate, and fight for better access, better treatments, and ultimately a cure. Whether you’re new to this disease or you’ve been living with it for decades, there’s something here for you.
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Steven Molony is an actor, writer, and filmmaker who makes all of #MEAction’s videos in addition to supplying voiceover. He is an ally to people with myalgic encephalomyelitis, Long COVID, and other chronic illnesses.

Jaime Seltzer is #MEAction’s director of scientific and medical outreach and she does research for Stanford University on ME and other complex chronic diseases. She is a person living with ME, and ME runs in her family with both her mother and sister affected.

We’ll be interviewing some of the most influential voices in ME/CFS and Long COVID, discussing books and articles on complex chronic disease, having candid chats about life with ME, #MillionsMissing and what it means to #StopRestPace, disability activism and advocacy, art and music from disabled artists you love, and so much more.

If you’re looking for an outlet on the road of chronic illness, you’ve come to the right place. This podcast is available on Apple Podcasts, Spotify, Audible, or wherever you prefer to listen to podcasts. If you like what you hear, please leave us a rating and a review as this will help to extend our reach. Thank you, as always, for your support!
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EPISODE 1: MEGHAN O’ROURKE AND THE INVISIBLE KINGDOM
EPISODE 2: FIONA LOWENSTEIN
EPISODE 3: #MILLIONSMISSING 2022
EPISODE 4: MAYO CLINIC
EPISODE 5: RYAN PRIOR AND THE LONG HAUL

Chronically Complex: The #MEAction Podcast - #MEAction Network

Sly Saint · Jan 12, 2023

Introducing Our Next Guest:
David Tuller

David Tuller obtained his Doctorate in public health from UC Berkeley. He is a senior fellow in public health and journalism at UC Berkeley’s Center for Global Public Health.

He was a reporter and editor for ten years at The San Francisco Chronicle, and served as health editor at Salon. He has also written articles about public health and medical issues for The New York Times and the policy journal Health Affairs.

Since 2015, he has been investigating scientific, methodological, and ethical problems with research on myalgic encephalomyelitis/chronic fatigue syndrome. His ongoing series on this issue, Trial By Error, can be found on Virology Blog, the science site hosted by Vincent Racaniello, a microbiology professor at Columbia University.

Steven and Jaime sat down with David to discuss his career in journalism as well as his perspective on research into ME. This episode is available now and we can't wait for you to hear it! You can listen on Apple Podcasts, Spotify, Audible, or wherever you prefer to listen to podcasts. Don't forget to rate Chronically Complex and leave us a review—that helps to raise the visibility of the podcast and assists in reaching more people.

Listen to the Podcast

This episode concludes season one of Chronically Complex. There will be no new episode in February while Jaime and Steven make some improvements to the show. If you have any suggestions you’d like them to consider, send an email to podcast@meaction.net. We look forward to continuing the conversation in March!
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Kalliope · Jan 14, 2023

Trial by Error by David Tuller
After Last Year's Tub Talk, Here's an Interview-Clothed-for #MEAction's Podcast

quote:
...here is my clothed interview with Jaime, #MEAction’s director of science and medical outreach, and Steven, the filmmaker who produces the organization’s videos–about my work, my background, and whatever else. (Of course, since this is a podcast, no one would actually know if if I were in a tub–but I wasn’t.)

Hutan · Jan 14, 2023

'complex chronic disease'
'chronically complex'

I may be signed on to a losing battle in trying to keep the word 'complex' away from ME/CFS. I don't think a label of 'complex' is at all helpful. It can be easily taken to mean that there are both biological and behavioural/psychological issues causing the condition. Not knowing the etiology of a disease is not the same as the disease being complex.

Great interview @dave30th and Jaime.

bobbler · Jan 17, 2023

Hutan said: ↑

'complex chronic disease'
'chronically complex'

I may be signed on to a losing battle in trying to keep the word 'complex' away from ME/CFS. I don't think a label of 'complex' is at all helpful. It can be easily taken to mean that there are both biological and behavioural/psychological issues causing the condition. Not knowing the etiology of a disease is not the same as the disease being complex.

Great interview @dave30th and Jaime.
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agree strongly

hibiscuswahine · Jan 18, 2023

It was a good interview, very interesting to hear David’s journey from journalism to public health and his reactions when tried to get responses from BPS brigade.

I actually don’t mind the word complex, speaking for myself, it is a complex presentation of symptoms and can take doctors time to tease them out especially when trying to consider the best symptomatic relief medication due to often high side effects to meds available. Many patients have complex presentations due to comorbidities and aging. Complexity is often because of the effect of one medicine for one physical system on another system. In psychiatry, often complexity was having multiple medical disorders outside the primary psychiatric diagnosis, or having several psychiatric diagnoses. In medicine, it is the same and all diagnoses need to be treated with care and diligence.

ahimsa · Mar 10, 2023

New episode available (Season 2, Episode 8) with guest Cynthia Adinig, a marketing specialist turned Long COVID advocate.

https://www.meaction.net/chronically-complex-meaction-podcast/

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#MEAction podcasts - Chronically complex

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