Thank you for this article! I needed it now. I've been living with CFS/ME for 5 years now, but have been having more, and worse crashes in the past few months due to lack of knowledge about CFS/ME despite being an RN. I've done a ton of research, but really needed some help with pacing. I was so glad to find this article!
We need patients and medical community to take seriously the danger of activity outside window of energy production.
It helps to understand that "exacerbation of symptoms" for people with myalgic encephalomyelitis includes debilitating symptoms that affect the brain, immune system and the cardiovascular system.
More education that "crashing" can cause life threatening downstream effects like cardiac issues as well as uptick in opportunistic bacterial infections and reactivation of viruses is needed to fully grasp the danger of push/crash cycle. See ME International Consensus Primer to learn about the pathophysiology of ME.
Thank you for this article. Pacing from the patient's point of view to make it clear that all activities, even passive ones, consume energy. I love the image of the app!
Step counting I think comes first, but below a certain point it will have less validity. Maybe 2000 steps???
Heart rate variability is definitely of some use. Folks love the Garmin watches. Garmin licenses their HRV algorithm from FirstBeats which made its name with high end athletic clients. Garmin’s are expensive. I found one so equipped at $200, but typically they are in $500 range.
Tysm for this blog. I'm in tears because someone understands. I already have a rollator, but I mainly use it in a crash just to get food or to bed. I didn't think about using it all the time to reduce the energy being used daily. (Now to convince hubby that I need to use it out of the house). I have saved your blog and everything attached to go back and watch. I live the way you write. You speak from the heart and openly. I felt like you were a friend talking to me. Again tysm 😊
Thank you, this was very helpful. Thank you for including links. If you know anything else about the watches and what is the cheapest still effective one that might be helpful in future
i particularly love the emphasis on how bafflingly sucky and counterintuitive and...for many of us...freaking IMPOSSIBLE it really is. and how it DOES take privilege! Thank you!
Just discovering now via a post on the the Turnto app - I really needed these concepts and suggestions!
Thank you for this article! I needed it now. I've been living with CFS/ME for 5 years now, but have been having more, and worse crashes in the past few months due to lack of knowledge about CFS/ME despite being an RN. I've done a ton of research, but really needed some help with pacing. I was so glad to find this article!
Important topic.
We need patients and medical community to take seriously the danger of activity outside window of energy production.
It helps to understand that "exacerbation of symptoms" for people with myalgic encephalomyelitis includes debilitating symptoms that affect the brain, immune system and the cardiovascular system.
More education that "crashing" can cause life threatening downstream effects like cardiac issues as well as uptick in opportunistic bacterial infections and reactivation of viruses is needed to fully grasp the danger of push/crash cycle. See ME International Consensus Primer to learn about the pathophysiology of ME.
Links to primer here in multiple languages. https://drive.google.com/file/d/1OLvCfM3HAZ4Yn_UELRWLXV8c3BTmwgnR/view
Thank you for this article. Pacing from the patient's point of view to make it clear that all activities, even passive ones, consume energy. I love the image of the app!
This is one of the best pacing guides I’ve seen! Thank you for compiling it 🧡
Thank you! Makes me happy to hear it’s helpful.
Also shared on Facebook support groups and received similar praise. Well done 👍🏼
Step counting I think comes first, but below a certain point it will have less validity. Maybe 2000 steps???
Heart rate variability is definitely of some use. Folks love the Garmin watches. Garmin licenses their HRV algorithm from FirstBeats which made its name with high end athletic clients. Garmin’s are expensive. I found one so equipped at $200, but typically they are in $500 range.
Tysm for this blog. I'm in tears because someone understands. I already have a rollator, but I mainly use it in a crash just to get food or to bed. I didn't think about using it all the time to reduce the energy being used daily. (Now to convince hubby that I need to use it out of the house). I have saved your blog and everything attached to go back and watch. I live the way you write. You speak from the heart and openly. I felt like you were a friend talking to me. Again tysm 😊
Thank you, this was very helpful. Thank you for including links. If you know anything else about the watches and what is the cheapest still effective one that might be helpful in future
Thanks such a helpful article
LOVE your writing--YES YES YES!! Thank you!
i particularly love the emphasis on how bafflingly sucky and counterintuitive and...for many of us...freaking IMPOSSIBLE it really is. and how it DOES take privilege! Thank you!
when I have more spoons there are physiological aspects of PEM/pacing that I think vary ginormously between patients/people.