From Olympic athlete to life in bed: rethinking how we help people with ME and long Covid
The Times’ account of former Olympic sprinter Beth Dobbin spending most of her day in bed highlights the devastating impact of severe ME. It also raises a difficult question: how can we move from recognising someone’s suffering to understanding what might help?
Gerry at The Health Equation
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Gerry Gajadharsingh writes:
An athlete who has represented her country at the Olympics understands effort, discipline and physical fatigue. The profound restriction described in Beth Dobbin’s story should make us reflect carefully on what we mean when we talk about fatigue—and how inadequately that word can convey the experience of severe illness.
I have written previously about ME/chronic fatigue syndrome and long Covid. These conditions overlap, although they are not interchangeable. Some people with long Covid meet the criteria for ME/CFS; others experience different patterns of illness.
For clinicians, the challenge extends beyond recognising the diagnosis. We need to make a reasonable attempt to understand the mechanisms contributing to the individual’s symptoms, how those mechanisms interact, and what may now be sustaining the illness.
A diagnosis is the beginning of clinical reasoning
A diagnostic label can validate someone’s experience and help them access appropriate support. However, it does not necessarily explain why that particular person experiences breathlessness, pain, cognitive difficulty, disturbed sleep or such limited tolerance of activity.
Two people with the same diagnosis may have different combinations of contributing factors. The initial trigger and the factors now sustaining their symptoms may also differ.
Unless we explore these relationships, treatment can remain empirical: trying interventions without a sufficiently clear understanding of what we are targeting. The result can be a frustrating succession of treatments with unpredictable benefits.
We do not need a complete explanation before offering help. We should, however, aim to develop a coherent working understanding, shared by patient and clinician, which can be tested and revised as care progresses.
Normal investigations should not end the enquiry
Routine investigations are essential for identifying alternative diagnoses and accompanying conditions. Normal results, however, do not establish that every aspect of physiological function is normal.
There is currently no laboratory test that definitively diagnoses or excludes long Covid. Assessment must consider symptoms, daily function and the person’s experience alongside examination and investigation.
Equally, we should avoid attributing every symptom to an existing diagnosis. Someone with ME or long Covid can also develop thyroid disease, iron deficiency, a sleep disorder or another condition requiring treatment.
How might IRSF help?
My Integrated Regulatory Systems Framework—IRSF™—considers seven interacting systems: respiratory, neural, endocrine, immune and inflammatory, metabolic, musculoskeletal, and circulatory.
Its proposed value is as a framework for clinical reasoning and coordinated care. It is not an established treatment for ME or long Covid.
The task is to explore how disturbances within and between these systems might contribute to symptoms and reduced capacity.
For example, a person may experience palpitations and difficulty remaining upright alongside pain, disrupted sleep and breathlessness. Assessment might explore circulatory and autonomic regulation, respiratory function, medication effects and relevant underlying disease.
Pain may disrupt sleep; poor sleep may increase pain sensitivity. Breathlessness may influence breathing behaviour, while altered breathing may contribute to some symptoms. These possibilities need assessment rather than assumption.
The purpose is to give each intervention a reasoned target: what are we trying to influence, why might that help, and what would the response tell us?
Moving beyond the argument about psychological causes
ME has a difficult history of psychological attribution and dismissal. Many patients understandably resist explanations that appear to suggest their illness is imagined, self-generated or something they could overcome through greater effort.
Clinicians need to recognise that history and its effect on trust.
At the same time, thoughts, feelings, emotions and behavioural patterns can influence physiology. In my clinical experience, these influences can be relevant to adaptive responses across the regulatory systems, particularly neural and respiratory regulation.
Anticipation, distress, pain and previous experiences can influence breathing, muscle tension, sleep and autonomic responses. Physical symptoms can, in turn, alter how someone feels, thinks and behaves. These relationships are reciprocal.
Recognising these interactions does not establish that psychological factors caused the illness, explain its severity or are the principal factors sustaining it. Physiological language should never become another means of imposing an unsupported psychological explanation.
The useful question is: what appears to influence this person’s physiology, and how significant is that influence within the whole picture?
Shared understanding can make care more targeted
A productive consultation allows patient and clinician to explore these relationships together: listening to the sequence of events, identifying reproducible patterns, investigating relevant alternatives and explaining the reasoning clearly.
When someone feels believed and develops trust in the clinician, it may become easier to explore influences that previously felt threatening or dismissive.
Psychological approaches may then become an acceptable part of care where they have an agreed purpose—for example, supporting sleep, reducing distress or helping someone manage the consequences of illness. They should never depend on accepting that the disease has a psychological origin.
The same reasoning applies to medicines, breathing interventions, nutritional support or manual treatment. Each requires an individual rationale, realistic expectations and review.
Capnometry or heart-rate variability measurements may sometimes help answer focused clinical questions. Neither can diagnose ME, establish a universal explanation for symptoms or demonstrate that someone can safely tolerate more activity.
Respecting the limits of the individual
Post-exertional malaise is central to ME/CFS and also occurs in long Covid. Even minor physical or mental exertion can trigger delayed deterioration lasting days or longer. This differs from ordinary tiredness after exercise.
NICE recommends individualised energy management for ME/CFS and advises against programmes based on fixed incremental increases in activity, including graded exercise therapy as defined in its guideline.
An integrated approach must respect this limitation. Consultations, investigations and treatment themselves consume energy. For someone severely affected, reducing the demands of care may be an essential first step.
Progress should also reflect the patient’s priorities. Fewer crashes, less pain or being able to tolerate a short conversation can represent meaningful improvement.
Better reasoning alongside better research
Stories such as Beth Dobbin’s underline the need for effective treatments and sustained research. They also challenge us to improve the care available now.
A coherent explanation must remain open to revision. Patient agreement, trust or improvement after an intervention does not, by itself, prove a proposed mechanism.
Nevertheless, a shared understanding can provide a clearer basis for deciding what to try, what to monitor and when to change direction.
For people living with complex illness, recognising suffering is essential. The next responsibility is to reason carefully about the factors contributing to it—and use that understanding to make care more individual, targeted and responsive.
Clinical disclaimer
This article provides general education and does not offer an individual diagnosis or treatment plan. Assessment and management should be personalised, particularly where post-exertional malaise or severe illness is present. This commentary does not assess Beth Dobbin’s individual medical circumstances.
References
Source article
The Times: “I represented Team GB at the Olympics. Now I’m in bed 22 hours a day.”
This commentary draws on the article’s accessible summary; the full shared article was unavailable for review.