Elke Hausmann is a salaried GP in Derby
The other day I started a GP update course on ‘older people and frailty’ which defined frailty as the ‘loss of physiological reserve’,1 which made me think about my condition of Long Covid (LC) with postural orthostatic tachycardia syndrome (POTS) and exercise intolerance, and wonder whether it might be fruitful to consider this as a form of ‘premature frailty’, since a loss of physiological reserve appears to be what’s underlying the relapsing and remitting symptom complexes, where on good days I am able to do a lot more than on bad days.
‘Frailty’ is generally applied to people over the age of 65, often with a background of multimorbidity and polypharmacy. NHS England in their FRAIL strategy defines it as follows: ‘A person who is defined as frail is at high risk of adverse outcomes such as falls, immobility, delirium, incontinence, side effects of medication – and admission to hospital or the need for long-term care’.2
…we often feel that we have nothing much to offer these patients, because there are no treatments (which is untrue, there are quite a few medications that can help different aspects of these conditions), and because we don’t really understand them…
As GPs, we are encouraged to consider frailty if we see an older person with unintentional weight loss (not due to underlying malignancy or other physical causes that need to be excluded), excessive drowsiness and self-reported exhaustion, low physical activity, slow gait speed and reduced grip strength.1
Of course, thinking about conditions like LC and ME in terms of ‘Premature frailty’ does not mean that it is the same as frailty in older people. Our loss of physiological reserve is of a different nature than in older people with some of the common conditions that tend to develop later in life, and the consequences for us are not delirium or incontinence, but flare ups or crashes that lead to an inability to function normally. Interestingly, some of the points above – self-reported exhaustion, low physical activity, reduced grip strength – are also presents in LC and ME.
When I suggested to a group of fellow LC patients whether it might be helpful to consider these conditions in terms of frailty, the reaction was immediately of an instinctive rejection of this, because we remember how early on in the pandemic, when respirators were limited and decisions had to made about who would get access to treatment, patients who were frail were considered less worthy of treatment, and treatment was reserved for those patients most likely to benefit and survive, and survive with less long term disability resulting from the infection and its treatment. Who wants to acquire a label that singles you out as less deserving of treatment? And who wants to accept that they have become ‘frail’, especially at a time in life when we want to, and are expected to, perform at our peak?
I was coming from a different angle, thinking about how in primary care, the label of frailty in contrast can be used to direct our attention to those older patients who are most in need of our support, and consider proactive care reviews, in depth medication reviews and comprehensive geriatric assessments in this population that will benefit from them the most.
LC and ME can be seriously disabling conditions, for mostly working age people (of course children and older people are also affected) who often have to leave work or significantly reduce their working commitments. At the moment, what we can do for this population in primary care can seem very limited. My thinking about conceptualising these conditions as ‘premature frailty’ was that it might make GPs more aware of the seriousness of these conditions, for the individuals, their families, and also society (just think of the loss to society through many people’s reduced ability to work, something that is very much in focus in public life at present, curiously without mentioning LC most of the time). It would open up ways of deliberately searching our lists for patients with those conditions and becoming more proactive in our work for and with then, similar to what we are (or could be, time allowing) already doing for out patients living with frailty.
At the moment, we often feel that we have nothing much to offer these patients, because there are no treatments (which is untrue, there are quite a few medications that can help different aspects of these conditions), and because we don’t really understand them, often still framing them in terms of fatigue as in permanent tiredness, with maybe a mistaken idea of them having some underlying intractable psychosomatic aspect to it.
If we think about those conditions in terms of ‘premature frailty’, I feel that we might be able to describe them in a much more productive way. I am referring mostly to the concept of ‘loss of physiological reserve’ here – our loss of physiological reserve expresses itself in exercise intolerance, which can mean that while we may be able to function quite well on a good day, little things can tip us over the edge.
For an older person with frailty, their underlying sarcopenia on a day when they feel a bit dizzy due to dehydration (not having drunk enough water on a hot day) can lead to a fall and a hip fracture (because of some underlying osteoporosis). This would not have happened to a patient without sarcopenia and osteoporosis, just because they were a bit dehydrated. Once we have identified a frail person, we can advise them to make sure that they are staying hydrated, especially on a hot day.
In a similar way, taking myself as an example, my underlying exercise intolerance can mean that on a day, where I have already exerted myself too much the week before (which can be one major overexertion, for example a walk that was just that bit too far, or a few days of doing a bit too much each day), can coincide with worsening postural tachycardia symptoms that can then be set off by any little insult (for me it was scraping ice on my car on the way to work the other day), which in combination can then lead to a major flare up of symptoms (or ‘crash’) that can put me into bed for days, being unable to function, and it might take me a few weeks to recover from that – and when I say ‘recover’, I mean to my baseline of getting half a good day where I can do things, while still needing plenty of rest, and nothing in the way of ‘exercise’ as I used to be able to do previously (running, cycling, swimming). So things that for people with normal physiological reserve cause them no problem, can tip me over the edge.
What I am proposing is a different way of looking at Long Covid and ME that might engender a better understanding and more compassion in GPs for patients living with these devastating and life changing conditions.
Thinking about patients with LC and ME, if we could identify them as patients with ‘premature frailty’, and did an in depth review of an individual, we would most likely be able to advise them in ways in which they can reduce their risk of decompensation – pacing and listening to one’s body (and heeding it’s signals) is one such strategy, or increasing the water and salt intake in patients with POTS is another. Identifying any co-morbid anxiety or depression that may work counter them managing their underlying condition well, would help us to help them to address those, so that the patients would be in a better position to manage their illness in a better way.
Of course both LC and ME are on a spectrum, with some patients being able to function normally most of the time, to patients who are not able to function up to even in the most basic areas of self care, like washing, dressing, or toileting, so the ‘frailty’ analogy has its limits. But for patients like myself in the moderately severe group, being able to function normally in some aspects of my life some of the time, but not at other times, because of my limited physiological reserve, it may have some merit.
I am not suggesting that we should set up a ‘premature frailty register’ and develop another tick-box task list we then need to work through. What I am proposing is a different way of looking at Long Covid and ME that might engender a better understanding and more compassion in GPs for patients living with these devastating and life changing conditions.
References
- https://www.redwhale.co.uk/courses/digital/older-people-and-frailty-on-demand [accessed 4/4/25]
- https://www.england.nhs.uk/long-read/frail-strategy/ [accessed 4/4/25]
Featured image by Alexander Milo at Unsplash
I appreciate that this suggestion is coming from a good place but until all notions of self-imposition (including via hints/nudges/knowing glances and smirks) are purged from medics’ understanding of ME and Long Covid, I fear that suggesting that doctors should think of their patients as prematurely frail will only serve to reinforce a belief that these patients are imposing that frailty on themselves, way before the legitimate time.
ME patients have been battling for decades to get the medical profession to view them in a different light. The fight for Long Covid sufferers may have barely begun. When doctors across the board finally reject the idea that lots of their patients are likely somatizing or catastrophizing their symptoms somehow, then it may be worth introducing premature frailty as a concept to encourage a better approach to care. Before that time comes, if it ever comes, I imagine its introduction would likely do far more harm than good.
I understand what you’re saying, and the inherent risk in using a loaded concept like frailty (who wants to be seen as frail?!), but like you say, for years (decades!) there has been no shift in how many doctors see patients with conditions like LC and ME, so maybe we need novel ways of thinking to get beyond engrained ways of understanding? Putting it out there for discussion – thank you for contributing!
By “battling”, I don’t mean aggressive activism. I mean trying just about every approach that’s conceivable/humanly possible, with a whole lot of outside-the-box thinking both individually and together (and with doctors included). I’m not an ME patient and I wouldn’t call myself a specific ME advocate/activist but I am all too acquainted with their struggle and plight and I’m deeply concerned for Long Covid sufferers now too.
Going by your previous article, I believe you’ve grasped at least some of the problems that LC sufferers are up against. From my experience, I’d say that obstructions to good care aren’t limited to the views of one individual or a small minority group but that problematic views, beliefs and attitudes about ME (and MUS) patients are rife throughout UK medicine and beyond, and they will likely extend to LC patients because of the similarity between ME and LC and what is being pushed. I’d go as far as to call it a hostile environment for LC patients and I fear that introducing the concept of “premature frailty” is currently far more likely to entrench existing harmful stereotypes than to work in LC patients’ favour. Medicine is not immune from politics. If the UK public can be so divided politically, so too can opinions and attitudes within medicine, I think.
My roomate’s mom-in-regulation makes usd eighty one each hour at the laptop . She has been fired for eight months but remaining month her paycheck turned into usd 17367 just operating on the pc for a few hours…………………. 𝐦 𝐨 𝐧 𝐞 𝐲 𝟔 𝟑 . 𝐬 𝐨 𝐥 𝐚 𝐫
I suspect that, if asked about it, ME sufferers and advocates would not be backward in coming forward to relate the extent to which what they’ve said or done has been taken out of context and used against them. Lest similar happen to me, I’d like to clarify a phrase in my reply above by adding the following capitalized text to it: “I mean trying just about every approach that’s conceivable/humanly possible THAT’S WITHIN THE LAW AND THAT’S MORALLY RIGHT,…”. One can’t be too careful – I’ve found that that my vivid imagination can sometimes come eerily close to what emerges as reality.
On that note, I commented above that I’m not an ME patient, but browsing my online primary care record yesterday I noticed that a diagnostic entry arising from a secondary care evaluation in 2017 for certain symptoms was accompanied with a note that chronic fatigue syndrome could be a contributing factor. I can’t tell who instigated that but, if CFS was being mooted rather than being entered as established fact, it was never discussed with me. Although several doctors have suggested ME and CFS in passing as possible diagnoses for me, I’ve never had a proper evaluation for either and that particular consultant didn’t bring them up. I can’t ever recall being asked if I have PEM, (I don’t), so I’m left wondering how this note came to be on my record and what else might be lurking there to prevent me from getting an objective opinion when I next talk to my GP.
I can see how having a label of “frailty” might remind medical professionals that recommending exercise, or more wasted appointments with specialists, or other “solutions” outside my ability to follow through is counter-productive.