Monday, September 14, 2020

Heart Rate Monitoring for ME/CFS & Physical Therapy

My trusty heart rate monitor - 2015 and still working great!
I recently appeared as a guest on a two-part podcast hosted by Physios for ME (physio is the British term for a physical therapist), all about using a heart rate monitor for ME/CFS. The videos are perfect for both ME/CFS patients and for physical therapists who work with us. Before I include the two videos, first a bit of background to help you understand what this is all about.

I wrote an article for the ProHealth website, Using a Heart Rate Monitor to Prevent Post-Exertional Malaise in ME/CFS, that provides all the basics about why and how a heart rate monitor can help those of us with ME/CFS better manage our illness and prevent crashes caused by over-exertion. It explains about PEM (exercise intolerance), what causes it, how to estimate your heart rate limit, and even tips on choosing a heart rate monitor. The article is short and easy to read, written specifically for patients, so start there to understand what this topic is all about.

Then, watch the first video, Heart Rate Monitoring for Post-Viral Fatigue Syndrome and ME, Part 1:

I have a brief part in this podcast, but mostly, I listened. They have three UK physios/physical therapists who work with patients with ME/CFS and are a part of the Physios for ME group. In this first part, they provide some of the technical details, with fascinating information from research into exercise intolerance in ME/CFS. This video also features a guest speaker, Todd Davenport of Workwell Foundation (part of the University of the Pacific). His organization has been researching exercise intolerance in ME/CFS for more than 20 years, and I have been following their fascinating studies since I first got sick in 2002. After all, PEM or exercise intolerance is the key defining characteristic of ME/CFS, and one of the biggest mysteries (beside immune dysfunction) at the heart of our disease. Todd's talk in this video provides some great information for both patients and PTs.

Next, Part 2 of the podcast is about Heart Rate Monitoring - Experiences of People with ME, and it include brief talks from four patients--including me--about our own personal experiences using a heart rate monitor. Some parts of this video have lower sound quality (mine is good), but it is well-worth a listen/watch to hear the wide variety of experiences:

Both my article linked above and the two videos reference orthostatic intolerance (OI), which is intrinsically linked with heart rate monitoring in ME/CFS. To learn more about OI, see my blog post Orthostatic Intolerance in ME/CFS.

Finally, the group that hosted these podcasts, Physios for ME, is focused on using physical therapy to help/treat ME patients. In the UK (and sometimes elsewhere), patients are often sent to PT for "exercise treatment" aka Graded Exercise Therapy (GET), which can, of course, be very harmful for ME/CFS patients. Physios for ME is doing something that is very much-needed--teaching physical therapists/physios how to work with ME patients safely, without causing post-exertional crashes.

If you are seeing a physical therapist for that reason OR because you have an injury or need to rehab after surgery (or if you are a physical therapist), I created a document, Guidelines for Physical Therapy for Patients with ME/CFS, when I needed PT. I shared it with multiple physical therapists during two different sets of PT for different injuries, and it was always well-received and helpful. It covers heart rate monitoring but also includes many other important facts and tips for PTs/physios working with ME/CFS patients. I also wrote this short article for ProHealth, The Dos and Don'ts of Physical Therapy When You Have ME/CFS, which links to the guidelines but also includes more information--for patients and PTs--including links to a specialized form of manual PT that has been found effective in treating ME/CFS, as well as EDS and fibromyalgia. This is not "exercise yourself well" PT, but a form of PT that begins with the patient lying down and entirely passive while the PT uses a technique called nerve-gliding to increase mobility and decrease pain. It's explained in that article.

So, I think that covers everything! I hope you enjoy the two videos and find them informative, along with the extra information I've provided here.

If you have any questions or want to share your own experiences with heart rate monitoring, please leave a comment. You can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.

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