A Sound-Based Programme for ME/CFS: What We Learned

Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) often involves navigating a complex and unpredictable set of symptoms that affect the whole body. Beyond persistent fatigue, many people experience post-exertional malaise (a worsening of symptoms after physical or cognitive effort), pain, cognitive difficulties, sensory sensitivity, and autonomic dysregulation. For many individuals, day-to-day life becomes a careful balance of pacing, rest, and self-management—often in the context of limited therapeutic options and significant uncertainty.

At BridgeRoots, we are committed to exploring approaches that feel accessible, gentle, and practical for real-world living, especially for people who may not be able to tolerate high-demand interventions. In late 2024, as part of routine community support, we delivered a six-week online programme using tuning-fork sound and vibration-based self-practice. While sound-based approaches are increasingly discussed as supportive for regulation and wellbeing, the specific evidence base within ME/CFS populations remains limited. This blog shares an early proof-of-concept evaluation of our programme, including what participants reported and what we can responsibly conclude at this stage.

Why sound-based support in ME/CFS?

ME/CFS often limits what is realistically possible in traditional rehabilitation or active wellbeing programmes. Many participants are unable to sustain interventions that require prolonged concentration, physical exertion, travel, or repeated appointments. In this context, low-exertion approaches—especially those that are sensory-based and can be practised at home—may offer an alternative pathway for supporting wellbeing without exceeding energy limits.

Sound and vibration interventions are proposed to support relaxation, internal calm, and nervous system settling. For individuals living with chronic multisystem dysregulation, such approaches may be perceived as helpful in improving the experience of symptom management, even where symptom resolution is not expected. However, because rigorous evidence is still emerging, any community-based implementation must be evaluated carefully and interpreted with honesty and caution.

What we evaluated (Proof-of-concept)

This evaluation was a retrospective observational analysis using anonymised data collected as part of routine delivery of the Tuning for Health Programme between October and December 2024. Sixteen adults with a confirmed ME/CFS diagnosis completed the six-week programme and provided pre- and post-programme self-ratings using 0–10 numerical scales. Participants rated physical, mental, emotional, and spiritual wellbeing, alongside fatigue and pain severity. Narrative reflections were also reviewed to help contextualise the quantitative patterns.

Because this was a community delivery evaluation rather than a controlled research trial, the aim was not to prove effectiveness but to explore whether a coherent signal of benefit might exist and whether the programme was feasible for participants living with ME/CFS.

What participants reported

Across all measured domains, participant-reported outcomes showed consistent directional improvement after programme completion. Wellbeing scores increased in physical, mental, emotional, and spiritual domains, and fatigue and pain ratings decreased compared to baseline.

Alongside numerical changes, narrative reflections frequently described themes of enhanced internal calm and improved symptom manageability. Participants often emphasised that the programme felt doable within their energy limits, and several reported a stronger sense of agency in daily self-care. For some, the value was not framed as a “cure” but as a supportive practice that helped them feel more regulated, more grounded, or better able to navigate fluctuating symptoms.

Importantly, the coherence between the quantitative trends and the narrative experiences suggests that participants perceived meaningful change—at least during the programme window—warranting more structured investigation.

What we can (and cannot) conclude

This evaluation has several limitations that are important to acknowledge openly. The sample size was small, the design was retrospective, and there was no control group. Participation was self-selected, and outcomes were based on self-report rather than objective physiological measures. For these reasons, the findings should be interpreted as preliminary and exploratory. We cannot infer causality, and we cannot claim the programme “treats” ME/CFS.

However, community-based research is often where early signals of acceptability and perceived benefit first appear. In this case, findings suggest that a low-demand, self-managed sound-based programme is feasible for adults living with ME/CFS and may be experienced as supportive across multiple dimensions of wellbeing.

Why this matters for community wellbeing

ME/CFS can be profoundly isolating. Many people living with the condition face limitations not only in physical functioning but also in social participation and consistent engagement with support systems. Approaches that are gentle, home-based, and minimally demanding may play a valuable role as part of a wider self-management framework—particularly when access to specialist services is limited.

For community organisations, the question is not only “Does it work?” but also “Is it feasible, safe, acceptable, and supportive in real life?” This proof-of-concept suggests that it may be.

Next steps: building real-world evidence responsibly

At BridgeRoots, we see this evaluation as a beginning—not a conclusion. The next step is to explore prospective approaches with stronger methodology, such as pre-registered studies, larger participant groups, longer follow-up, and inclusion of comparison conditions where feasible. Future work may also consider outcomes that reflect the lived reality of ME/CFS, including pacing confidence, symptom flare frequency, sleep quality, and perceived control in daily life.

We remain committed to holding this work with integrity: sharing early findings honestly, learning from participant experience, and contributing to practice-based evidence that can inform future community and research partnerships.

A note to our community

If you are living with ME/CFS, you deserve support that respects your limits, your nervous system, and your lived reality. Programmes like this are not about pushing through. They are about creating gentler ways to settle, regulate, and reconnect to your own internal capacity—one small step at a time.

We will continue to share learning as this work evolves.