36 ME/CFS and POTS with Ryan Prior (episode page)
Description: I talked to Ryan Prior, co-director and producer of Forgotten Plague, a documentary about ME/CFS. I made Ryan hold the microphone because my arm was tired, and he wound up kind of interviewing me a bit. We talked about ME/CFS, POTS, how the two patient populations overlap, and some of the performative aspects of being a patient. I talked about living with and trying to manage POTS, quality of life, and try to answer the question posed by the MedX Studio Space of how to foster disruptive co-creation in healthcare.
Hey there and welcome to In Sickness + In Health, a podcast our relationships with our bodies, and issues at the intersections with chronic illness, disability, healthcare, and mortality. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.
Nothing said on this show should be considered medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. Every person is different, even within disease groups, so none of my guests should be regarded as official representatives or spokespersons for their conditions. Please respect their very personal choices, and unless they ask for it, please don’t make suggestions about treatments or lifestyle changes. Unsolicited medical advice is never not annoying.
In this episode, I talked to Ryan Prior, co-director and producer of Forgotten Plague, a documentary about ME/CFS. This conversation was recorded at the 2016 Stanford Medicine X conference in September, where Ryan and I were both ePatient Delegates on the Storyteller Track.
We ran into each other in the MedX Studio tent and I made him hold the microphone because my arm was tired. It’s weird how much that changes the dynamic of an interview, he actually wound up kind of interviewing me a bit.
We chatted about ME/CFS, Postural Orthostatic Tachycardia Syndrome (POTS), how the two patient populations overlap, and some of the performative aspects of being a patient. I talked about living with and trying to manage POTS, quality of life, and try to answer the question posed by the MedX Studio space of how to foster disruptive co-creation in healthcare.
I decided to put this episode out now since October is Dysautonomia Awareness Month. If you’re a longtime listener to the podcast, you might have heard the Dysautonomia Series that we launched the show with last year. If not, go back and take a listen! I talked to five POTS patients with different primary diagnoses about their experiences living with dysautonomia. I recorded episode 01 with Lauren Stiles, President of Dysautonomia International. She gave us a crash course in just what dysautonomia is, and some of the fundraising and research grants DI has been able to provide in this neglected field.
We got to talking because I was explaining to him that my own, almost decade-long struggle with severe chronic fatigue has me interested in the condition. Both ME/CFS and one of my diagnoses, POTS, share the common features of orthostatic intolerance and chronic fatigue. Orthostatic Intolerance is, put simply, an increase in symptoms that comes on with assuming an upright position, and relieved when laying down. It is associated with various forms of dysautonomia like POTS, and is a key finding in MECFS.
One of the distinctive characteristics of ME/CFS is post exertional fatigue or malaise. This is one of the things that makes the fatigue associated with the condition so much more than the generalized fatige that comes along with so many other conditions. Many experience setbacks as the result of even limited exertion. Sometimes permanently. I experience this, and I know it is for real. It is totally unlike the generalized fatigue I had for most of my life until some viral illness changed everything in 2007.
I have had doctors bill with the diagnosis code for cfs just to get treatments covered, but I don’t actually “have” it. Which is fine, really, I don’t need another poorly understood, often doubted complex chronic condition on my medical records—which at this point read more like an ICD wrap sheet than anything else. But so many of my other symptoms have their own diagnoses, and it’s impossible to tell where one ends and the other begins, if they’re just part of a continuum or discrete diagnoses. It doesn’t really matter. Except it does, because it’s not taken seriously.
If you’re wondering how either of us managed to make it to MedX despite living with such fatigue and post exertional fatigue, I will tell you that it was not easy. I’m still recovering and have spent most of the [ast month in bed. Part of the reason I was able to go was because I knew I would be able to spend the time I needed to recover. I also had to fly in a few days early and fly out several days after the conference ended so I could recover. I had no idea going into it whether it would work, but it did, for the most part. There are still plenty more people with both our conditions who could not even consider doing something like this due to their symptom burden.
You can see what kind of devastation ME/CFS wreaks on the lives of those that live with it in Ryan’s documentary, Forgotten Plague. The film also goes into the issues with the condition’s name, social stigma, and some of the reasons it doesn’t get the attention and research funding it should. You can also hear an episode of episode 7 guest, Chris Snider’s podcast Just Talking, with Ryan. They talk more about the MedX experience and ME/CFS.
It’s been a while since I put out a regular episode and I’ve missed you all! My apologies for my long absence! I took the summer to let my brain rest, and work a bit on some other projects. But I'm ramping production of the podcast back up again, and there are more new episodes coming.
I started the podcast last year with weekly episodes, then switched to an every other week schedule because single handedly producing a weekly show was totally unsustainable. Future episodes might be even less regular, I’m going to put them out as I’m able to produce them, and I’m not sure what that might look like schedule-wise, because I am still feeling pretty crappy. But better something than nothing, right?
If you’re listening to this episode the week it comes out, we’ll actually be celebrating our FIRST BIRTHDAY next week, which is super exciting. Even though I wasn’t able to actually produce episodes straight through the year, I’m still really proud of what I’ve accomplished with the show so far, given what I deal with health wise. So this is a serious reason to celebrate!
Thanks to my Patrons over on Patreon for supporting the show on an ongoing basis: Stanford R., Laura, Katie, and Yarrow. Patreon enables me to accept small recurring donations on a per episode basis, to help with the production costs for the podcast. If you haven’t yet, check us out over on Patreon... There are different pledge levels that come with different rewards, and Patrons who support the podcast also get access to the Patron Only feed, on which I’ll be sharing some more behind the scenes stuff and sneak peaks at new episodes.
Check out insicknesspod.com/donate for links to our patreon and paypal pages, including a video in which I describe exactly how Patreon works. Don’t worry if you can’t donate, the chronic life is expensive, I get it. You can also help out by taking a moment to subscribe, rate, and review us on iTunes, it helps other people find the show!
Check out the episode page on insicknesspod.com for links to some of the stuff we talk about in this episode, and find resources and more from us there. Like I mentioned, you can find us on social media @insicknesspod.
Find Ryan and and his work online at rtprior.com. His documentary, Forgotten Plague, is available on Amazon Prime, iTunes, Google Play, and DVD. Amazon Prime members can stream the documentary for free, and foreign audiences can find it on iTunes, where it is now available in 7 languages. Get the DVDs at Amazon.com or ForgottenPlague.com.
I just wanted to make a note before getting into the episode about some language that I used when we were talking about the performative aspects of being a patient. How I talk about it has way more to do with the perception of patients than what patients actually have to deal with to get adequate pain and symptom management. Ryan asked me how I avoid looking like a drug seeker, and I replied that I have made the conscious decision not to seek drugs—but not everyone has that choice.
To hear more about what many chronic pain patients face in seeking treatment for severe chronic pain in the current climate around pain medication, take a listen to our episode 22 with Jen. She talked needing regular opioid pain medication at a time when those medications are public enemy number one. We discussed why she needs access to these medications (spoiler alert, it might have something to do with having her pelvis sawed in half—twice), how we deal with drugs here in the US and how that has created a climate in which we can't have open and honest conversations about drug use, and how challenging it can be to really treat chronic pain. In that episode, we also discussed the important distinctions between addiction, abuse, and dependence, and the many trade-offs and compromises we often have to make in treating chronic health conditions. For a taste of this issue from MedX check out Britt, aka HurtBlogger’s post about her experience as a token patient on the conference panel about the opioid epidemic. She too debriefed with Chris Snider on the Just Talking podcast, and I’ll include a link on the episode page to find that as well.
And I hope you enjoy this episode...
Thanks for listening to this episode of In Sickness + In Health. Check out the episode page for links to some of the stuff we talk about in this episode. You can find resources and more from us at insicknesspod.com and on social media @insicknesspod. Find Ryan and his work online at rtprior.com. And if you haven’t yet, watch his documentary Forgotten Plague, which is available on Amazon Prime, iTunes, Google Play, and DVD.
And don’t forget to be excellent to yourselves and each other.