Implementing Pacing to Prevent PEM - Dr. Todd E. Davenport

[@jennibaggott3454]

Thank you. I'm in tears watching this, in bed. I am recovering from a rough visit with my neurologist who really scolded me last week for not exercising hard enough. I have been learning to pace myself for over 20 years. I needed her help, but instead I am in a PEM flare. Thank you for doing the work that you do and making these videos available.

[@ixchelkali]

Very well done, and it's good to hear a clinician who has such a good understanding of PEM. As someone who has been living with this for more than 20 years, I agree with what you said about the enculturation which makes pacing hard, but I could add additional things which make it hard. You touched on the way your baseline of energy, your "energy envelope," fluctuates from day to day, so that you have to listen to your body. But sometimes your body doesn't turn on its warning level until you've already crossed the line that causes PEM. I usually say the goal is to use no more than 75-80% of my available energy each day, to keep a reserve for unexpected exertion (e.g., you drop a jar of pickles and have to clean it up, or the dog gets out, or the cat throws up on the bed). Hold some in reserve, so you can handle everyday emergencies without PEM. Another thing that makes avoiding PEM is that there can be invisible drains on your energy. Maybe you get exposed to a cold and your body is fighting off a virus. Maybe there's a change in the weather and your body has to adjust to changes in temperature or barometric pressure. Maybe you get good news and feel very excited. All of those things use energy in ways that may not be obvious, which can make pacing difficult. Your energy envelope is a constantly changing target. It's like trying to carefully budget your money, only someone keeps taking money out of your account, and occasionally putting some in, without telling you. That makes it hard not to overdraw your account. One other factor which makes pacing difficult, especially when you're first learning, is the weird delay between the exertion and the onset of PEM. Most people stop to rest when they feel tired. But PEM doesn't usually hit until 24 to 48, or even 72, hours after the exertion. So when you feel the symptoms of PEM, the flu-like malaise, you're having to think back a couple of days to try to think what you did wrong. Compounding that is that one time a certain activity will bring on PEM and the next time it won't. That makes it hard to plan and hard to tell from your body's signals, when you need to stop. It takes lots and lots of practice, and even then, no one gets it right all the time. One tip I would offer newbies is that if you think you've overdone it, make the next day a total rest day: lying down quietly, avoiding stimulation like conversations or social media or exciting TV. Just boring complete rest. Doing that can sometimes prevent, or at least lessen, the PEM. But a more important tip is don't think of PEM as the price you pay for engaging in activities. Because then you'll start to think, it's worth a PEM crash to get to do the things I enjoy, the things that are important to me and make me feel alive. But it doesn't work that way. Because with each PEM crash, you lose a little ground; so little, it can be imperceptible. But over time, you have less baseline functionality. In other words, you get worse. So the goal is to avoid PEM. The better you are at not triggering PEM, the better chance you have of improving. And when you do have PEM, the treatment is rest, rest, and more rest. This is a disease where bravely pushing through and carrying on will rise up and bite you in the behind. This disease requires even more bravely learning to live within its limitations.

[@FionaC1]

Great video! For me the biggest difficulty with pacing is the delay between trigger and symptoms. Although you say pacing is about listening to your body, by the time we feel symptoms we’re already a day or so beyond the trigger. It’s not like stopping walking when you start to feel your legs are tired 😐

[@nickyleach]

Superb interview. What a thoughtful, skilled, and clear communicator on this misunderstood topic. I do hope that Dr. Davenport is training PTs in this topic. It is so needed.

[@Crowquill277]

Excellent interview - thanks!

[@elizabethharvester6111]

What a fabulous video! Dr. Davenport speaks with a lot of empathy and simple words, which I so appreciate. I also appreciate this video being shorter in duration. It's hard for me to watch anything more than 30 minutes in one sitting, and I forget important points if I watch a video in parts with breaks in between. Great job focussing the main points into one cognitively-accessible video!

[@invisiblyinsane9125]

One of the best videos I have seen to help explain ME and PEM! I can't hold up my head, chew, or even sit up when PEM hits. After pushing and crashing for over 30 years, you would think I would know my limitations.

[@christinacornilsen1783]

Thankyou. Great interview.

[@julieryzha]

Where can we find PT's as wonderfully knowledgeable and empathic as he is for treatment?

[@MEActNet]

While I am not aware of a list of ME knowledgeable PTs taking patients, we have seen some wonderful work from physical therapists and occupational therapists. Physios For ME has a great website with resources you can share with a physiotherapist.

[@invisiblyinsane9125]

My exact sentiments! 💯

[@shassblake]

Brilliant resource to share in my support group. 'Thank You Kindly' 😊

[@MEActNet]

You are welcome! We are glad you can share with your support group!