I am covid-19 (antibody positive) with moderate fatigue at six months and struggling with pacing for four months. THIS VIDEO IS A TOTAL LIGHT BULB MOMENT! i had just worked out that the 4 major crashes were when my HR>110. You have validated this, proved it, this needs disseminating to people with Covid-19 fatigue AS FAST AS POSSIBLE! Paul Garner, Liverpool School of Tropical Medicine
NICE and the NHS need to be brought on board somehow. There's a lot of historic resistance. Wishing you better health and much appreciation of what you are doing to raise awareness. ME patients have been fighting this battle for years to try to get recognition of these techniques. I hope they help you. As you are in the early stages of post-viral illness, your prognosis is still susceptible to good management. Take good care
Thank you , Paul, for bringing another validating voice to the long invalidated ME community! I watched the BMJ webinar last week, and read some of your post-covid articles. I'm SO sorry you are experiencing ME-like symptoms, but it seems you have caught on to PEM early in the game, which hopefully will improve your prognosis. Thanks for speaking up - we need strong voices like yours! (From a 'retired' 24-year ME advocate in the States.)
Paul, I recommend you visit the WorkWell Foundation website for additional information. People with long haul Covid can benefit from the information about CFS/ME. WorkWell tests patients to determine their aerobic capacity. Many of us also have dysautonomia, especially POTS. Out mitochondria are not producing enough ATP and our aerobic energy systems are dysfunctional. You may be experiencing this as demonstrated by your 110bpm limitation. Best wishes, sorry you are experiencing this.
Thank you for that podcast. I am coming to the conclusion that activities whether physical, cognitive or emotional that affect my heart rate has an impact on my PEM, and this video explained things so well that it makes sense of what is going on in my body. I have previously focused on the mitochondria but now see how it is related to cardio respiratory and the heart rate. Thank you so much, all of you
Thanks to all involved for their sharing their insight and knowledge. There aren’t many management tools for ME/CFS, so this is such important information to share. Thanks again!
Hah! My hearfelt thanks to ALL of the professionals working to help us pwME. My hah! was the realisation that my weepy reaction to Paul Garner’s post was 50% empathic and 50% watching an extremely helpful but nonetheless complex video and I need to rest. Much love and thanks. Part2 tomorrow.......
Thank you so much. I am a ME patient since the beginning of 2024 and have just now learned about the benefits of Heat rate Monitoring. If you or other viewers have up to date recommendations for hrm watches, any advice would be greatly appreciated!
I stumbled onto a used Garmin Fenix 7, and it helped me before I knew these details. Just getting the sleep data, Body Battery, Stress level and other data got me more in sync with how I was doing. Now I have a better understanding of the Heart Rate Value (HRV) it reports on. That is great! 😁 Also good pulse measurment, breathing rate, PulseOx, and suggestions for exercise to do. I think that some of the more affordable Garmins can be quite useful enough if you look up exactly which data they collect. It's a generally robust system that is specialised on athletic performance, so pretty useful.
I charged my external speakers and was able to hear. Thank you so much! my life has radically changed in the past 2 months, I'm not sure if I have PVFS or ME, but the heart monitoring gives me a LOT of hope! because I've been on the push & crash, boom and bust pattern. The inevitable crash after trying so hard to take care of myself and recover has been so depressing! I think one thing to add into the standard of full care with those with ME would be an acknowledgement of the mental health side-effects of ME, and how to treat that and provide support and hope! This video has provided me with a lot of hope! because I have whiplash from my life changing so radically! and am struggling, but managing. From an active middle aged person to a debilitated couch potato. Also the health care system in the US is in ruins!! which I think plays some role in the progression of virus / bacterial infection --> ME.
I am covid-19 (antibody positive) with moderate fatigue at six months and struggling with pacing for four months. THIS VIDEO IS A TOTAL LIGHT BULB MOMENT! i had just worked out that the 4 major crashes were when my HR>110. You have validated this, proved it, this needs disseminating to people with Covid-19 fatigue AS FAST AS POSSIBLE! Paul Garner, Liverpool School of Tropical Medicine
NICE and the NHS need to be brought on board somehow. There's a lot of historic resistance. Wishing you better health and much appreciation of what you are doing to raise awareness. ME patients have been fighting this battle for years to try to get recognition of these techniques. I hope they help you. As you are in the early stages of post-viral illness, your prognosis is still susceptible to good management. Take good care
Thank you , Paul, for bringing another validating voice to the long invalidated ME community! I watched the BMJ webinar last week, and read some of your post-covid articles. I'm SO sorry you are experiencing ME-like symptoms, but it seems you have caught on to PEM early in the game, which hopefully will improve your prognosis. Thanks for speaking up - we need strong voices like yours! (From a 'retired' 24-year ME advocate in the States.)
You should have talked about this in your recent BMJ article Paul
Paul, I recommend you visit the WorkWell Foundation website for additional information. People with long haul Covid can benefit from the information about CFS/ME. WorkWell tests patients to determine their aerobic capacity. Many of us also have dysautonomia, especially POTS. Out mitochondria are not producing enough ATP and our aerobic energy systems are dysfunctional. You may be experiencing this as demonstrated by your 110bpm limitation. Best wishes, sorry you are experiencing this.
Thank you for that podcast. I am coming to the conclusion that activities whether physical, cognitive or emotional that affect my heart rate has an impact on my PEM, and this video explained things so well that it makes sense of what is going on in my body. I have previously focused on the mitochondria but now see how it is related to cardio respiratory and the heart rate. Thank you so much, all of you
Thanks to all involved for their sharing their insight and knowledge. There aren’t many management tools for ME/CFS, so this is such important information to share. Thanks again!
Really great explanations of what is going on in our bodies and how we can possibly use this with our pacing.
Incredibly useful information. Thanks for putting together research with the experiences of pwME who are already using these methods.
Hah! My hearfelt thanks to ALL of the professionals working to help us pwME. My hah! was the realisation that my weepy reaction to Paul Garner’s post was 50% empathic and 50% watching an extremely helpful but nonetheless complex video and I need to rest. Much love and thanks. Part2 tomorrow.......
Really enjoyed this. A lot of very usefull information for a newbie to M.E like myself.
We really need to design an app for apple watch to collect data and to monitoring PEM.
Thank you. Grateful for all your work!
Thank you so much. I am a ME patient since the beginning of 2024 and have just now learned about the benefits of Heat rate Monitoring. If you or other viewers have up to date recommendations for hrm watches, any advice would be greatly appreciated!
This is brilliant,thank you!
I have the Fitbit Alta hr and it provides hrv in the premium Version
I stumbled onto a used Garmin Fenix 7, and it helped me before I knew these details. Just getting the sleep data, Body Battery, Stress level and other data got me more in sync with how I was doing.
Now I have a better understanding of the Heart Rate Value (HRV) it reports on. That is great! 😁
Also good pulse measurment, breathing rate, PulseOx, and suggestions for exercise to do.
I think that some of the more affordable Garmins can be quite useful enough if you look up exactly which data they collect.
It's a generally robust system that is specialised on athletic performance, so pretty useful.
How do pace points work? I have the Polar wearable.
How do I obtain advice re core muscles pem
hard to hear! thanks anyways.
I charged my external speakers and was able to hear. Thank you so much! my life has radically changed in the past 2 months, I'm not sure if I have PVFS or ME, but the heart monitoring gives me a LOT of hope! because I've been on the push & crash, boom and bust pattern. The inevitable crash after trying so hard to take care of myself and recover has been so depressing! I think one thing to add into the standard of full care with those with ME would be an acknowledgement of the mental health side-effects of ME, and how to treat that and provide support and hope! This video has provided me with a lot of hope! because I have whiplash from my life changing so radically! and am struggling, but managing. From an active middle aged person to a debilitated couch potato. Also the health care system in the US is in ruins!! which I think plays some role in the progression of virus / bacterial infection --> ME.
Nothing recent here