IACFSME 2022 Virtual Medical Conference: Day 1 Workshops: 27 July (9 am to 5 pm EDT)

Those who attended the conference have now been sent links to all the talks which we can access for a month.

I have now watched the rest of this session. Remember this is addressed to OT's and PT's to advise them how to help pwME with managing activity using pacing.

3 kinds of pacing

- for healthy people - how we organise our daily lives

- therapeutic pacing, eg for pain, which involves finding a base level and gradually increasing activity

- pacing for PEM - staying within energy envelope and managing activity to avoid PEM.

This distinction is important for therapists to understand, as they are trained to do the therapeutic pacing for things like pain, and that's not appropriate for pwME because of PEM. So she specified that this session is about the third type, Pacing for PEM. Below I've copied her screen summarising key points of this:


Pacing for PEM focused on

1. Severity Threshold & Symptoms What is the Quality & Quantity threshold? What are the primary symptoms?

2. Heart Rate Biofeedback & Self-Assessments What are the physical cues of exceeding the threshold?

3. Activity Assessment & Task Analysis
Prioritize: What are the core occupational roles and components of the task?
(She also talked about not taking an activity in isolation but seeing it in the context of all the activities before and after when working out whether to do an activity.)
Plan: What will it take to get it done? Modifications/Adaptations
Pace: How can I get this done with what I have? What is my energy envelope?

4. Create Space for Recovery: Leave 30% Battery for Recovery
(I think here she means recovery back to level before each activity, not recovery from disease)
________________

The method for helping with pacing is based on heart rate monitoring, what she called 'heart rate biofeedback' using the Workwell suggestion of
Resting heart rate plus 15 beats per minute.
This needs to be adapted if the patient is on medication that affects HR, or has POTS.

Heart rate on its own is not enough, symptoms need to be taken into account too. For example HR may not reflect cognitive fatigue or emotional stressors.

She recommends a combination of HR monitoring, activity, symptom and PEM records, and severity scales to monitor over time.

She describes HR biofeedback as providing 'an objective tool for preventing “Push/Crash Cycling” and “Fear-Based Restriction”, can help counter secondary deconditioning and depression and improve the patient’s sense of control.' She gave quotes from patients who had learned to do less or allow themselves to do a bit more using HR.

There was then a detailed example of task based analysis for washing/grooming for each of 4 severity levels.

This is copy of her final screen

Setting Goals & Measuring Outcomes

Goal: Improve Quality of Life

Treatment Focus

• Manage symptoms

• Manage activity w/in PEM limitations

• Restore autonomy


Measuring Outcomes:

• Identify primary symptoms impeding functional performance

• Track & monitor the primary symptoms

• Utilize Quality of Life scales to determine overall improved health
______________

It was good to see her describing the goal as improving quality of life, not as being able to do more. Her focus was very much on getting the most out of life while preventing PEM as much as possible.

I was also pleased to see that she included the therapist monitoring how people's quality of life was affected, rather than trying to use fatigue or physical functioning scales as the CBT/GET people do. There was clear recognition that it's about helping pwME to have a better quality of life within their limitations, not to pretend this was a cure.

 

An abstract of a presentation posted on another thread:
ME/CFS: Stigma Arising from Online News Media Images and Stock Image Platforms, 2022, McMillan et al