BJGP - Could GP's understanding and management of Long Covid and ME be improved by conceptualising those conditions in terms of 'premature frailty'?

[Kalliope]

Written by GP and LC sufferer Elke Hausmann

Quote:

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.

https://bjgplife.com/could-gps-unde...ose-conditions-in-terms-of-premature-frailty/

 

[Eleanor]

GPs and other HCPs often seem to have enough trouble understanding the facts of what life is like for pwLC and ME, without becoming confused with yet another 'it's a bit like this except not really' condition.

 

[Midnattsol]

I was thinking about frailty in relation to pwME earlier this week! A bit like us it is not an agreed about definition on frailty, but while there is «biopsychosocial» ideas it is generally seen as a physical decline in ability to deal with external stressors.

 

[Utsikt]

it is generally seen as a physical decline in ability to deal with external stressors.

What does external stressors mean?

 

[Midnattsol]

What does external stressors mean?

In this case, it’s a catch-all phrase that can include having an infection, a cognitive challenge or having to deal with something emotional (hence how the psychosocial tries to be relevant).

There is a figure in one of the WHO reports on frailty showing how someone frail, when exposed to a stressor dips below a sustainable level of exertion and how this «dip» takes a while to improve and that the improvement is not back to baseline. Compared with the non-frail that doesn’t dip as far in their functional capacities when faced with a stressor and improves back to baseline.

Very much the same way too much exertion can be defined for someone chronically ill.

Edit, found the figure here:
https://www.bgs.org.uk/frailty-what’s-it-all-about

 

[Trish]

I think there has been some suggestion that a hospice approach to care may be more appropriate for people with very severe ME/CFS than hospital style care. I take this to mean providing a quieter, lower stimulus environment and care aimed at making current life more comfortable and bearable, rather than a hospital rehab approach that seems always to focus on getting people out of bed and doing more as soon as they can.

 

[Utsikt]

In this case, it’s a catch-all phrase that can include having an infection, a cognitive challenge or having to deal with something emotional (hence how the psychosocial tries to be relevant).

There is a figure in one of the WHO reports on frailty showing how someone frail, when exposed to a stressor dips below a sustainable level of exertion and how this «dip» takes a while to improve and that the improvement is not back to baseline. Compared with the non-frail that doesn’t dip as far in their functional capacities when faced with a stressor and improves back to baseline.

Very much the same way too much exertion can be defined for someone chronically ill.

Edit, found the figure here:
https://www.bgs.org.uk/frailty-what’s-it-all-about

Thank you!

My concern would be that most probably assume that frailty is partially treatable. The link you shared does:

Is frailty amenable to prevention and treatment?

Yes

• “healthy ageing” reduces the risk of developing frailty:
• Good nutrition
• Not too much alcohol
• Staying physically active
• Remaining engaged in local community/ avoiding loneliness

Patients can be signposted to the NHS England and Age UK publications

 

[Chestnut tree]

Thank you!

My concern would be that most probably assume that frailty is partially treatable. The link you shared does:

That reminds me of an article of a very elderly lady (90+). She requested help from her local authority, and before she would be considered had to do a physical training program.

But she wasn’t physically capable, that is why she applied for help in the first place.

 

[rvallee]

Yes, but with a slight modification: frailty without aging, or unrelated to aging. Because although premature works, it also varies in which age-related aging does not, and is reversible, although we don't know how and for now simply bank on chance.

However this is a great point, one that is mainly about other people's reaction to labels, rather than labels themselves:

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

It's quite absurd that useful labels often can't be used because they are so often used to hurt people, even when all they do is describe reality. Which is the same problem with psychosomatic labels, in the end they are only really used to hurt people. Not on purpose, but their purpose guarantees it, which is the same thing in the end.

But the problem remains that doing so is very expensive. In societies that can't even be bothered to spend a fraction of the costs incurred from this illness, without doing any dedicated spending, it's hard to see this working out without a major research agenda capable of producing solutions to this problem. Without solutions, none of this matters. Governments are not going to provide the resources for this, and health care systems don't have them right now. Hell, my country has basically adopted assisted suicide as a 'solution' to this.

The label would certainly help physicians better understand the nature and intensity of the impairment. This is something that is badly needed, but who knows how much harm would be done by misusing it, something that always has to be front and center, because it's guaranteed to happen with us. It's what medicine has always done with us: fail us and hurt us because they misunderstand all the basic details.

Especially with aging populations soon facing a demographic cliff. Most people aren't aware of what's coming with this, how quickly populations can fall when all the conditions we have right now are met, of falling birth rates and socioeconomic instability. Soon there will be only one worker for every disabled/retired person, then even fewer. And over the last 3 decades or so, almost all the economic gains, something like 90%, have gone to the richest people in the world, so the math won't math out unless there is a giant realignment in economic and financial policies.

But the comparison is definitely apt. My father will soon be 79. He is still more capable than me in most things. I am far more frail than he is, although we seem to be reaching the crossover point.

 

[Midnattsol]

Thank you!

My concern would be that most probably assume that frailty is partially treatable. The link you shared does:

Again like ME/CFS some say it's possible and some don't. Others see it as a "dynamic" state one can transition in and out of. And as rvallee mentions, there is "frailty without aging" that some don't use because frailty is seen as "extreme aging" (a bit like how ME/CFS is at the extreme end of a fatigue spectrum according to some).

I'd also mention that WHO is moving away from "frailty/focusing on health deficiencies" towards "intrinsic capacity/focusing on someone's functional capacity", to allow for focusing on what people are able to do not on how their bodies are failing. Which can be nice in some cases, but problematic in others (capacity in some areas may not outweight deficiencies in others and that reality can be lost).

 

[MeSci]

I think there has been some suggestion that a hospice approach to care may be more appropriate for people with very severe ME/CFS than hospital style care. I take this to mean providing a quieter, lower stimulus environment and care aimed at making current life more comfortable and bearable, rather than a hospital rehab approach that seems always to focus on getting people out of bed and doing more as soon as they can.

I've been victim to this at least twice - the first time after a muscle transplant from my leg, when I just knew that my leg hadn't yet healed sufficiently, and as a result of getting up it split open and became infected - probably the reason why I now have a huge scar on my leg.

The second time was when I was receiving a lot of treatment following my overdose, and my legs swelled up so much I had trouble getting back onto the bed.

Both times I obeyed very reluctantly, and I don't think there was any acceptance of blame by the staff.

 

[bobbler]

GPs and other HCPs often seem to have enough trouble understanding the facts of what life is like for pwLC and ME, without becoming confused with yet another 'it's a bit like this except not really' condition.

The battle seems to be with these edicts that are inappropriately and inaccurately learnt as ‘all’ and ‘noone’

like ‘there is no illness that doesn’t benefit from exercise’

and all the pyjama paralysis tosh where they extrapolated stats from a 90yr old in hospital for an operation for two weeks and think that (which should have huge variance) can just be assumed to apply to everyone

and let’s be honest the attitude of medicine to ‘mental health’ (I hate that term) and respect because they won’t hear when someone says hang on I’m fitter or was fitter than most but then PEM is illness.

all these ‘too easy’ because they are both simplistic and often just nonsense ideas are the issue and rewriting the person and the facts and calling the patient a liar based on a hangover of a power difference issue and being allowed to just accuse the patient as mad, lying or subconscious if they say no that doesn’t fit is like this back door trick out of applying scientifically they are encouraged to do


So using the term frailty but when it’s younger people I worry would just end up in the same old wrong-thinking that people just need forcing to build themselves up they exercise and mental fortifying

I get the point though that something really needs to be done on describing it better

it’s hard because some who are really ill as I was could look strong and ‘be strong’ in their good moments but the pen screws all their ability to wake and sleep and function at the right time. And so on. Some have things more straightforward seeming to others perhaps and had a different experience but it really was this that led to me never feeling safe never understood and treated appallingly like a bad person all my life.

so yes the name matters actually (chronic fatigue or ME don’t work) and this poor description has really done a disservice to access to life for those who get knocked about sleep wise - I don’t think the term frailty will understand those issues

 

[Utsikt]

The battle seems to be with these edicts that are inappropriately and inaccurately learnt as ‘all’ and ‘noone’

like ‘there is no illness that doesn’t benefit from exercise’

I don’t even think this is unique to GPs. I think it’s almost an universal human feature to consider most groups to be relatively homogenous, certainly in the western world.

My suspicion is that it might be related to our trouble with intuitively understanding statistics and randomness, in addition to the fact that we can only ever truly experience one perspective - our own.