Information is power and I feel so much more empowered after listening to this interview. Also a little less alone. Thanks for getting the word out and Professor Devonport is a gem for the work he is doing. So grateful for you both.
This episode was so brilliant! And I learnt so much. Also was particularly heartened and moved by his belief and interest in patient experience as key to how he approaches his understanding in PEM. And thank you Natasha for asking him to address cognitive exertion - really helped having some better insight into cognitive fatigue as this one confused me for so long!
Ah thank you so much! Yes, it's so funny that we find it so moving, really, when this should just be the norm. Listen to the patient and their experience as it has to inform your work! And I'm so glad you found the cognitive exertion thing useful. The more I take time to listen and notice to my own symptoms, the more I realise how much this impacts me (which is hard, I love cognitively exerting hehe). I learned so much from him and I'm thrilled I'm not the only one. Thank you for listening!
Yes I find it harder not to overdo cognitive exertion - especially as it can be very enjoyable in the moment! But I'm going to try finding things that I've seen or heard before and also how he mentioned about using a montone delivery and I thought omg bingo! Got some good old fav books and audiobooks to go to now for more of a rest. I thought it was so lovely he had varied his tone for his audience too 💜
I wish I'd had this episode when I was first experiencing PEM! It would've explained a lot. It was really interesting to hear the science of what's going on. If it didn't sound so much like torture I'd love to do a CPET to have that clearer picture of what's happening to my body.
Feeling so grateful for this podcast episode- such great info and analogies! Will send this to ppl when they are looking for a way to better understand PEM/ME. Thanks for all the work you do <3
I cannot thank you enough for this amazing episode, Natasha! I'm about to send it to my entire family, as it explains so well what I've been struggle to communicate to them for years (when they can't understand why it's a big deal for me to spend 8 hours at family Christmas upright and socializing, or just work a 40-hour/week job, etc.) I cried several times, listening to this one- partly because my emotional regulation is just terrible during this flare-up and partly because I felt seen, at last- and by a research clinician, no less. Maybe I'll email this podcast to all of my specialists and doctors as well. :)
Just following up on this- I emailed the podcast to my family this morning, and 3 of them immediately listened to it and replied to me. My dad, whose mom had ME, was particularly grateful for this episode, which deepened his understanding of PESE, PEM, energy conservation, etc. A thousand thank yous to both you and Dr. Davenport for this episode.
This was such a blessing. Thank you for it. Having lived a long life with MS, THIS is my most difficult ongoing problem. Malaise is such a quiet, soft word, and does not convey the impact of the related sensations of the phenomena. I would call this Post Exertional Disability Exacerbation. that is, whatever underlying neurological disease you have, it is produces a maximum symptomatic level as a result of the amount of sensation experienced or expended. Mental exertion is the worst. It can be as simple as having to go to bed because someone talked too much, too close to you and displayed a lot of arm and hand movements. It helped so much just to hear an understanding of the syndrome. TYSM.
This was such a good listen. What a lovely generous man Professor Davenport is - he’s deepened my understanding of my condition, and I was in tears when he was talking about approaching PEM and pacing with grace because I felt guided and understood. Thank you so much for such a valuable interview.
This was a brilliant interview. Thank you. It described exactly what I am going through. I am starting to get cognitive exertion issues which is such a bummer. I'm pausing my own substack because of this for a while because I need to do some other writing and I can't do both. I really liked this professor. He was so caring and is doing such brilliant work. And yes, hope is a choice. Sometimes, as you see your life slip away, it is difficult to be hopeful, but mostly I manage it.
Information is power and I feel so much more empowered after listening to this interview. Also a little less alone. Thanks for getting the word out and Professor Devonport is a gem for the work he is doing. So grateful for you both.
I'm so glad you feel empowered after listening to this! He's great isn't he!
This episode was so brilliant! And I learnt so much. Also was particularly heartened and moved by his belief and interest in patient experience as key to how he approaches his understanding in PEM. And thank you Natasha for asking him to address cognitive exertion - really helped having some better insight into cognitive fatigue as this one confused me for so long!
Ah thank you so much! Yes, it's so funny that we find it so moving, really, when this should just be the norm. Listen to the patient and their experience as it has to inform your work! And I'm so glad you found the cognitive exertion thing useful. The more I take time to listen and notice to my own symptoms, the more I realise how much this impacts me (which is hard, I love cognitively exerting hehe). I learned so much from him and I'm thrilled I'm not the only one. Thank you for listening!
Yes I find it harder not to overdo cognitive exertion - especially as it can be very enjoyable in the moment! But I'm going to try finding things that I've seen or heard before and also how he mentioned about using a montone delivery and I thought omg bingo! Got some good old fav books and audiobooks to go to now for more of a rest. I thought it was so lovely he had varied his tone for his audience too 💜
I wish I'd had this episode when I was first experiencing PEM! It would've explained a lot. It was really interesting to hear the science of what's going on. If it didn't sound so much like torture I'd love to do a CPET to have that clearer picture of what's happening to my body.
I'm so glad you found this interesting! And gosh, I know right? I'm genuinely curious about getting one!
My CPET was eye opening and instrumental in helping get short term and long term disability, and hopefully SSDI
Wonderful! Thank you so much!
Thank you!
Feeling so grateful for this podcast episode- such great info and analogies! Will send this to ppl when they are looking for a way to better understand PEM/ME. Thanks for all the work you do <3
Oh I'm so glad, thank you so so much!
I cannot thank you enough for this amazing episode, Natasha! I'm about to send it to my entire family, as it explains so well what I've been struggle to communicate to them for years (when they can't understand why it's a big deal for me to spend 8 hours at family Christmas upright and socializing, or just work a 40-hour/week job, etc.) I cried several times, listening to this one- partly because my emotional regulation is just terrible during this flare-up and partly because I felt seen, at last- and by a research clinician, no less. Maybe I'll email this podcast to all of my specialists and doctors as well. :)
Just following up on this- I emailed the podcast to my family this morning, and 3 of them immediately listened to it and replied to me. My dad, whose mom had ME, was particularly grateful for this episode, which deepened his understanding of PESE, PEM, energy conservation, etc. A thousand thank yous to both you and Dr. Davenport for this episode.
This was really helpful. Made me cry. Helped me to know there are researchers out there that care. I felt less alone with this.
This was such a blessing. Thank you for it. Having lived a long life with MS, THIS is my most difficult ongoing problem. Malaise is such a quiet, soft word, and does not convey the impact of the related sensations of the phenomena. I would call this Post Exertional Disability Exacerbation. that is, whatever underlying neurological disease you have, it is produces a maximum symptomatic level as a result of the amount of sensation experienced or expended. Mental exertion is the worst. It can be as simple as having to go to bed because someone talked too much, too close to you and displayed a lot of arm and hand movements. It helped so much just to hear an understanding of the syndrome. TYSM.
This was such a good listen. What a lovely generous man Professor Davenport is - he’s deepened my understanding of my condition, and I was in tears when he was talking about approaching PEM and pacing with grace because I felt guided and understood. Thank you so much for such a valuable interview.
Great interview, but it’s not true to say post exertional malaise is specific to ME. It’s a key symptom in genetic mitochondrial diseases
This was a brilliant interview. Thank you. It described exactly what I am going through. I am starting to get cognitive exertion issues which is such a bummer. I'm pausing my own substack because of this for a while because I need to do some other writing and I can't do both. I really liked this professor. He was so caring and is doing such brilliant work. And yes, hope is a choice. Sometimes, as you see your life slip away, it is difficult to be hopeful, but mostly I manage it.
I'm so glad this was so ground breaking for you! Thank you!