THE SOFT SESSIONS:
Evidence building for ME/CFS management strategies
This peer-led integrated online resource for people living with ME/CFS offers
self-management tools targeting the disabling symptoms of ME/CFS,
mind-body activities to improve sensory regulation and proprioception, mental health care and coping strategies
opportunity to gather socially, through inclusive live online sessions and support group meetups led by an occupational therapist (OT), where participants can lie down or rest as needed
assistance to help people with ME/CFS better express their lived experience to family, colleagues and health teams.
The program is evidence-informed, non-prescriptive and respectful of neuro and energy variation. It has no goal to increase hours of activity, as this has been problematic elsewhere. Instead, it aims to offer an exploration of ideas and practices to improve empowerment and quality of life through better-managed symptom experience and through confident pacing (the current self-management recommendation by ME/CFS researchers and clinicians) in line with the strategies recommended by USA Centers for Disease Control and Prevention.
The core of the project is a 10-session program that can be undertaken in a self-paced mode or a live online group setting with accompanying OT led support meetings. Each one-hour session is themed and comprises gentle movements (drawing on yoga, Feldenkrais, Pilates, fascial and vocal health) plus meditation focused to increase autonomic regulation.
This 10-session program, and accompanying educational material, will be freely available online because
most people with this condition are under-served medically and therapeutically
it welcomes urban and regional participation (including people with reduced income, bed or housebound)
it does not involve travel to class reducing fatigue/sensory overwhelm
it can connect people who are socially isolated
it offers both a live online format and pre-recorded material to practice when and how it personally suits across different time zones.
it can assist carers, allied health professionals and doctors to better understand lived ME/CFS experience and offer support including to those unable to tolerate online experiences.
It is a feature of this project that both the session designer/movement presenter and Occupational Therapist have lived experience of ME/CFS and accordingly are intimately aware of issues such as fluctuating energy levels, common co-morbidities, PEM triggers and the distress symptom flares cause: factors that usually prevent people with ME/CFS from participating in general community classes.
Please note that currently it is considered that the program may be suitable for people with mild to moderate ME/CFS and those with fluctuating severity. However, we suggest people with severe ME/CFS refrain unless they are able to tolerate audio input, imagine movements and/or find meditation beneficial.
The expected outcomes for program participants are
improved confidence in using a range of pacing strategies
improved confidence and capacity to participate in community-based therapeutic activities without triggering PEM,
regular social connection with an understanding community
A pilot study is planned to measure these outcomes quantitatively using 3 targeted questionnaires, each undertaken pre and post-program; Heart Rate Variability (HRV) monitoring using the Visible app in conjunction with felt sense scores using a new somatic fatigue scale; and retention and support group participation rates.
Questionnaires used pre- and post the program will assess changes in confidence in pacing and in PEM experience thereby allowing us to match this to HRV data and view if there are trends that correlate.
HRV is an elegant quantifying measure of the autonomic state of the participants across many time points. This could add evidence-based knowledge to our understanding of how practices considered to improve regulation of the autonomic system are received by people with ME/CFS. It is planned for participants to do twice daily measures in the five weeks preceding the program, during the five-week program and for five weeks subsequently.
Expression of felt sense will occur prior to each session using the Corgi scale. The Corgi scale has been selected to get a visceral sense of how a person is feeling (and to step away from sense of loss or judgement that may be associated with more clinical scores). It is a valuable data point but also useful for participants to use with deciding how much to do within the session. Post-session there will also be opportunity in the companion guide to write down reflections.
Valuably, individual participants could have, at the end of the program, records of their own felt sense, symptom experience and HRV across many days, which could help them become more confident in their management strategies thereby improve quality of life.
If we see any group-wide correlations, that would be interesting indeed and hopefully bring benefit to our fatigued and chronically ill communities and inform program development.