What does the fallout from the ‘Salt Path’ saga tell us about our society’s ideas about chronic illness and exercise?

Elke Hausmann is a GP, not currently working due to Long Covid

Tere can’t be many doctors who have missed the recent revelations in the Observer¹ that the popular ‘true’ story of ‘The Salt Path‘ by Raynor Winn² has not been based wholly on the truth, since they have been picked up enthusiastically by the national press and discussed all over social media and beyond.

The premise of ‘The Salt Path‘ is that a couple is blamelessly made homeless, at the same time as the husband is diagnosed with a ‘terminal condition’, after which they decide to walk the South West Coast Path, and with doing that his condition improves. In the following books they go on further walks with the same results.^3,4 The main allegation against Winn is the omission of a background of financial fraud, which is not what I want to discuss here. What I want to focus on is the aspect of Winn’s husband Timothy’s (Moth’s) illness.

Moth was diagnosed with an atypical form of CBS, as doctors’ letters (which Winn has made public on her website)⁵ have shown. CBS is corticobasal syndrome, a clinical syndrome with signs and symptoms of CBD (corticobasal degeneration),⁶ which is a brain condition that can ultimately only be diagnosed at autopsy after death. In life, doctors rely on the signs and symptoms the patient presents with, available investigations, as well as the progress of the condition over time to make the diagnosis of CBD. CBD is a progressive neurodegenerative condition that typically leads to increasing disability and death within 6-8 years, as opposed to the more general CBS, which can be due to pathologies other than CBD, and can have a much slower progression.

On page 15 in ‘The Salt Path’, Winn writes that a doctor told them: ‘I believe you have corticobasal degeneration, CBD. We can’t be absolutely certain about the diagnosis. There is no test, so we’ll only know at postmortem.’² It may be that at that point the couple were told he had CBD, it may be that it is only since then that the doctors have revised their diagnosis to CBS, it may be that the difference between CBD and CBS was not clearly explained or obvious to the couple who have no medical background, and who might have even used the terms interchangeably (in any case the diagnosis of a degenerative neurological condition must have been very frightening).

But as a consequence, CBD is what the Observer ran with when they referred to several neurologists stating that his illness trajectory did not fit the clinical course of CBD (still remaining without much in the way of outward signs of the illness, as would be expected so many years after diagnosis),¹ which some took to mean that Winn might have lied about her husband being ill at all.

While Winn may not have lied about her husband having a degenerative neurological condition, and she was clear that in comparison to other people affected by CBD, his condition was indolent, at the same time it was also described as a ‘terminal’ condition, which paints a certain picture of severity that might have misled readers. For all we know, it might have been commercial pressure pushing the more dramatic, ‘terminal illness’ terminology, as it appears on the back cover of the paperback copy of ‘The Salt Path’.²

The couple’s story thus became the recognisable ‘brand’ of the redemptive story of an individual triumphing over adversity, a story that resonated with millions precisely because it was ‘true’ and was ‘giving hope’ to people even with ‘terminal’ conditions.

And it’s not that Moth’s story necessarily wasn’t true. As Winn says on her website, ‘I have charted Moth’s condition with such a level of honesty, that this is the most unbearable of the allegations. My books have become a record of his health, from the mornings when I need to physically help him from the bed and into the physio routine that makes his days possible. Through the movement issues, the bowel problems, the memory slips, the stiffness, the pain, the fatigue, the obsessions, and the despair. To the times, on our very long walks, when those symptoms have improved. I have never sought to offer medical advice in my books or suggest that walking might be some sort of miracle cure for CBS, I am simply charting Moth’s own personal journey and battle with his illness, and what has helped him’.⁵

But the problem is that individual stories are taken up and generalised and widely applied beyond where they should be, especially if they appear to confirm pre-existing cultural biases.

In the wake of the book and subsequent Film release, I have seen many accounts on social media of people with degenerative neurological and indeed other chronic conditions, who report that they had been told by well-meaning relatives and friends to read Winn’s books, and/or to go on a long walk to get better, and how dismayed they were, because while they knew that they couldn’t, and that it would not help them, they could not make other people understand that. Others were said to have felt guilty and ashamed that they were not able to ‘do more’ to get themselves better, on the basis of this ‘true story’ proving that exercise can heal.

And that’s where it get interesting. Our societal bias that exercise can only ever heal, never harm, is incredibly pervasive. It is playing out right now in how we understand and discuss Long Covid, and as we have done in relation to ME for decades. I think one of the main reasons for why we are no further in finding a cure for those conditions is that so many don’t believe that exercise can ever harm.

The hallmark symptom of ME, and arguably the most disabling symptom of severe Long Covid, is post-exertional malaise (PEM), or post-exertional symptoms exacerbation (PESE).⁷ This symptom is so far removed from healthy people’s experience that they simply cannot imagine it. Words fail us when we are trying to describe what PEM feels like. As the term suggests, PEM hits after exercise (or exertion, which can be cognitive and emotional, as well as physical), generally 24-72 hours later, and is often described as a ‘crash’ (which is an all-encompassing and overwhelming experience, like being in the middle of a hangover, the worst flu, and having just run a marathon, or even been poisoned, all together – this approximation of a description might give healthy people a flavour of what it can feel like, using as metaphors experiences that they might be able to relate to). Until you have experienced it, you cannot really comprehend it. It can be truly terrible. All you can do is lie down and wait it out. And the only way to prevent it is to not overexert yourself, and that threshold is very different for every one person, and even for the same person on different days. For people with PEM, this means no or very limited exercise, and limiting all aspects of living, because ultimately any activity is a form of exertion, physical or otherwise. Patients with very severe PEM may never be able to get out of bed, let alone exercise.

It goes so against our societal bias that exercise is always good for you, that most people will uncritically believe the claims of those doctors who still propose ‘graded exercise therapy’ (GET) as a treatment for Long Covid or ME, long after this has been discredited.^8,9 over the voices of patients who are testifying in their many thousands that this is NOT good for us, and can even make us worse.¹⁰

So exercise can be beneficial for some medical conditions, it can be recommended for supporting mood and general well-being in others, and its role in preventing conditions like coronary heart disease or diabetes is well established, but in some very specific conditions, we need to know that exercise can also harm. There are many patients with initially milder ME whose condition has deteriorated long-term after they tried to exercise their way out of it, often encouraged by healthcare professionals.¹¹

To come back to Moth’s story, Winn has written on her website that he has been very affected by the suggestion that they have made up his illness.⁵ By all accounts, he is an ill man. We must have compassion for him (as we should for all ill people), and if we have to point out that there may have been a misrepresentation of his condition (however much deliberate or unintentional), the readers and the general public were at least as implicated in making that one individual’s story into a general ‘truth’, to be applied to anyone with CBD, with a degenerative neurological condition, or just with any chronic illness, because it fits so well with our pre-existing biases: that people will not only always feel better with exercise, but that they can exercise their way out of illness.

This is a narrative that the political establishment, presiding over unprecedented levels of chronic illness, disability, economic inactivity and benefit bills, will welcome: the suggestion that ill people can get better, if only they tried hard enough. It places the onus onto the sick individual to get better, and away from the expectation that in a civilised society, the collective should support ill people (who often don’t get better, no matter how hard they try). And remember, ‘they’ can become ‘you’ tomorrow.

The sorry saga of ‘The Salt Path’ has been very revealing of our ideas about chronic illness and exercise, and we can only hope that people will be learning from it. The message I want to get across is that exercise is not a panacea for all ills. For healthy people, exercise (within certain levels of moderation) is undoubtedly a good thing, in many medical conditions exercise can be supportive, for the condition itself or for the patients’ general well-being, it may stabilise certain conditions, but rarely reverse them, and in others it can actually be harmful.

If you ever ‘prescribe’ exercise, think about it as a treatment with its own benefits, risks and side effects, not dissimilar to any drug. Just don’t assume that exercise is always good for everyone, or overestimate its ability to heal any ailing body.

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