Editorial: Lancet: Rethinking lived experience 2026

[Sean]

Maybe but also it’s a bit difficult and there’s a lot of them so, y’know…

Nah, that just means they will always be able to find a few dozen good positive grateful patients to let them tick their 'did the patient consultation thing' box, and go back right back to carrying on as before

A tiny nod to PR, and nothing more. It will change absolutely nothing. At least, not for the better.

 

[hotblack]

I think what we all wish for has been repeated clearly. For doctors and wider healthcare professionals to listen to the evidence wherever it comes from. They choose not to. They chose not to take us or the condition seriously. They misname it, they belittle it. They choose to think they know better.

We do not get a choice in this matter. This is our experience and one we have lived for decades individually and millennia combined.

I don’t know how change will happen until that is recognised. I would love for it to be different but as has also been repeated on this forum and in so many places, there are no examples of good clinicians or clinical practice for people with ME/CFS. And yet of patients and clinicians, it is clinicians who have all the power here and decide what happens.

It usually is, but from a patient perspective it's very notable how the experience of illness is entirely missing from how health care operates

Absolutely agree. And this is kind of what I mean when in the past I have said hospitals are setup for healthcare professionals (to which I know some here disagree). Perhaos it’s better to say they’re not setup for patients. My experience and that of many others is that there is zero attention to our needs in the process, only to a very narrow definition of what is needed to deliver an intervention from the perspective of the institution.

Recognising this is I think crucial to making healtthcare safe for many of us. Because right now it isn’t and it’s because the hoops that others, even quite ill people, have to (and successfully) jump through are not only massive barriers for us in terms of accessing healthcare but they actively make us worse. Everyone here has experienced at least a temporary lowering in health of quality of life from interactions with healthcare. Some have had much much worse. We may not understand why it happens but we must accept it does.

We cannot change some of the dreadful outcomes for ME/CFS patients within the healthcare system until it recognises our experiences, the reality of living with this condition and what makes us, especially the most severe, worse.

We know this already. There is no rational reason for us not being sbke to ‘do no harm’ or at least reduce harms. But the decision is made to ignore us and so the harms continue. This is rationalised in many ways but usually based in the idea of dismissing us or our experiences in skme way. And it has to be ratjonalised, because how else could people live with themselves if they admitted what they were doing to people.

And yes of course I understand the pressures on people working in these services and resources constraints. But it is an irrelevant variable here. Why? Because those are universal across conditions, we see good and bad in other conditions and problems clearly attributable to inadequate resource. While the way in which people with ME/CFS are mistreated is as far as we can tell pretty universal and unique.

 

[Jonathan Edwards]

It's a good idea in itself,

But is it really?

The WHO says:

the voices of people with lived experience should “shape the policies, services and decisions that affect their lives

Why? Surely the services should be shaped by reliable evidence of usefulness?
Otherwise if a patient feels intensely that they are short of magnesium they will want to know why the doctor is not giving them magnesium - or antivirals, or massage or whatever.

The paper says:

it establishes the foundational assumption of the lived experience movement: that key aspects of mental health are known or understood only by people who have lived through mental health problems.

That may be a foundational assumption of a movement but that doesn't mean it makes any sense. Of course someone with migraine is the only one to know their migraine but in what sense do they 'understand' their migraine? This is not the way we should work. Understanding needs to be based on verifiable theories. What we have here is the basis of psychotherapy and physiotherapy - the idea that just by listening and making up stories you can come to an understanding of what is wrong. A bit of childhood trauma maybe, some perfectionism, overwork, personal relationships....

There is a deep confusion here between listening for the sake of being supportive, which is not specifically a health care professional task, and listening as a basis for discovering what is wrong and how best to treat. Inasmuch as we have any idea how to do the latter it is part of medical teaching. It is called taking a history. But in a very large proportion of conditions, with the advance in investigations, only a few key elements of history tend to be useful guides to management.

What is being advocated for here is exactly what is not wanted. Pretending that you can make up rules about what is going on and what is good treatment just by listening. The worst sort of folklore-based medicine.

 

[MrMagoo]

I think what we all wish for has been repeated clearly. For doctors and wider healthcare professionals to listen to the evidence wherever it comes from. They choose not to. They chose not to take us or the condition seriously. They misname it, they belittle it. They choose to think they know better.

We do not get a choice in this matter. This is our experience and one we have lived for decades individually and millennia combined.

I don’t know how change will happen until that is recognised. I would love for it to be different but as has also been repeated on this forum and in so many places, there are no examples of good clinicians or clinical practice for people with ME/CFS. And yet of patients and clinicians, it is clinicians who have all the power here and decide what happens.


Absolutely agree. And this is kind of what I mean when in the past I have said hospitals are setup for healthcare professionals (to which I know some here disagree). Perhaos it’s better to say they’re not setup for patients. My experience and that of many others is that there is zero attention to our needs in the process, only to a very narrow definition of what is needed to deliver an intervention from the perspective of the institution.

Recognising this is I think crucial to making healtthcare safe for many of us. Because right now it isn’t and it’s because the hoops that others, even quite ill people, have to (and successfully) jump through are not only massive barriers for us in terms of accessing healthcare but they actively make us worse. Everyone here has experienced at least a temporary lowering in health of quality of life from interactions with healthcare. Some have had much much worse. We may not understand why it happens but we must accept it does.

We cannot change some of the dreadful outcomes for ME/CFS patients within the healthcare system until it recognises our experiences, the reality of living with this condition and what makes us, especially the most severe, worse.

We know this already. There is no rational reason for us not being sbke to ‘do no harm’ or at least reduce harms. But the decision is made to ignore us and so the harms continue. This is rationalised in many ways but usually based in the idea of dismissing us or our experiences in skme way. And it has to be ratjonalised, because how else could people live with themselves if they admitted what they were doing to people.

And yes of course I understand the pressures on people working in these services and resources constraints. But it is an irrelevant variable here. Why? Because those are universal across conditions, we see good and bad in other conditions and problems clearly attributable to inadequate resource. While the way in which people with ME/CFS are mistreated is as far as we can tell pretty universal and unique.

We only want them to listen to us because they do so much which harms us.
I’d be happy for them to not listen to us, if instead they looked at the medical and biological impacts of having ME and acted accordingly to do no harm, but apparently that’s beyond them.

 

[rvallee]

But is it really?

Yes. It's half the equation. Half of an equation is pretty important, and the consequences are terrible. It explicitly shows when the other half hasn't gotten out of bed, and it leaves those affected with nothing, instead of half. Half is much better than nothing, and full is also much better than half. We've had the half-assed version, it's not great, has very strict limitations.

There is not any other industry that can think this way, precisely because it makes everything worse.

 

[rvallee]

Understanding needs to be based on verifiable theories.

Not everything can be put down as theory. Even in a super advanced society, there will be a lot that can't be put into some theorem. In fact this is a clear sign of a mature, advanced society, to understand the need for flexibility. It's honestly maddening knowing how much better it could be, but everything gets stuck by systems that always prefer to hold on to their models when they disagree with reality.

Reality always wins. Usually in the form of misery, suffering and death. Not a great system, very limited in its ability to grow.

 

[hotblack]

Not everything can be put down as theory. Even in a super advanced society, there will be a lot that can't be put into some theorem

Yeah. Huge amounts in life is unverifiable. Even science and most progress of ideas within it is based upon ‘the best we can currently know, subject to change’.

And let’s be honest, the reality is the bar for us seems to be set at some impossibly high indisputable verifiable truth.
While the bar for the professionals, institutions and organisations we rely upon or whom have harmed us is the low low one of vibes.

It’s just another demonstration of the imbalance of power.

 

[neurophusion]

I get what you are saying, Jonathan Edwards. But what do we do in the absence of good evidence and verifiable theories? The evidence for pacing and PEM is not good enough for conservatives, but in the absence of good evidence, NICE took the precautionary principle because of PEM and patient surveys.

Many of the posts in this thread are touching on expecting the bare minimum in relation to the precautionary principle. We do not need to adopt biobabble and folklore-based medicine to apply the precautionary principle as NICE used it. The same would apply to not just PEM but sensory hypersensitivity. These appear to be amongst the two most pressing concerns for pwME/CFS running the gauntlet of healthcare services.

People with lived experience of their illness tend to "understand" the characteristics of their illness. Those with migraine know what it is like to be going through one, and they learn to recognise potential triggers. No one understands the biology of their illness through intuition alone. We might not always be accurate about the triggers of PEM or migraine, but it would be dangerous to automatically reject our suggestions.

Obviously there is a distinction between the subjective experience of hallmark PEM and the proposed biological mechanisms for PEM. The rehabilitationists and biopsychosocialists essentially dismiss both as folklore unless it aligns with their hypothesis about dysregulation and deconditioning (their own folklore).

I cannot find a source at hand but I am fairly certain that Mr Alpha Woof himself has woofed on Twitter about how the very concept of "PEM" itself is basically folklore.

I suppose the point of my post is that if you set the bar high to only include evidence that even conservative doctors would find convincing enough for commissioning, we would also probably have to disregard the existence of the phenomena that people commenting on this thread are most concerned about.

There needs to be some practical and nuanced middle ground?

 

[Jonathan Edwards]

I get what you are saying, Jonathan Edwards. But what do we do in the absence of good evidence and verifiable theories? The evidence for pacing and PEM is not good enough for conservatives, but in the absence of good evidence, NICE took the precautionary principle because of PEM and patient surveys.

Yes, I completely take that point. The point I am trying to make is that although this 'Lived Experience Movement' sounds rather positive at first glance it is deeply entrenched in the backward thinking of the BPS philosophy. It reduces medicine to making up fairy tales about why people feel the way they do.

People with lived experience of their illness tend to "understand" the characteristics of their illness.

Indeed. But the Movement has introduced this idea of understanding for altogether selfish and nefarious reasons. It allows you to bullshit about why people are feeling bad as much as you like. And advocacy groups lap it up. The irony is stark.

 

[Jonathan Edwards]

I suppose the point of my post is that if you set the bar high to only include evidence that even conservative doctors would find convincing enough for commissioning, we would also probably have to disregard the existence of the phenomena that people commenting on this thread are most concerned about.

Again, I see the point but because the evidence shows clearly that exercise therapy provides no useful benefit and the precautionary principle always takes into account softer evidence for adverse events, we do not need to go there. Sure, lots of people are going there, but we should not be fooled that this 'Movement' is on our side. It preys on that belief.

 

[rvallee]

Yeah. Huge amounts in life is unverifiable. Even science and most progress of ideas within it is based upon ‘the best we can currently know, subject to change’.

Not just that, but this applies to most of engineering, which has incredible achievements, has pretty much built the modern world. Very little of it is knowable by theory, it almost all happens through experimentation. Medicine is very limited in what it can do, but so much of the modern is built on things no one can explain, all they can do is show that it works by working out how to figure things out, which medicine hasn't gotten around to. Not having theories for why things work is not an obstacle.

 

[bobbler]

I have been silenced for 35 years and now even the Lancet wants to help to hear me?
Why don't I believe that?
Lived experience with all kinds of hypocritical: "We want to hear from you", no you don't, never have.
And even if you hear, you certainly won't listen.

Can you imagine, the closest I can get as an analogy to communicate it to well people is if you had some sort of stitched up mediation meeting with an all-powerful boss where they pretended this time they were going to be interested and listen. And you had to go in beaten-down and vulnerable as your whole survival is on the line 'tippy-toeing' waiting for the growl if you broached on anything that said things weren't perfect. In a really small room down a really long corridor of course.

And it ends in a big spiel from them about what a hard time they are going through that is designed to require the mediator to performatively also pretend to be sympathetic to them, again, decades on after doing the same for all those years. Really productive. Really appropriate.

Yeah let's be honest what is needed is mandatory 'experiential' stuff for those who come across us because consideration is needed above whatever this won't change. I think some really think if we just understood what everyone else thought of us better and learned to not be so whatever in order to cause that reaction then all would be 'A-okay'. Roger. Out. The problem's the victim for not realising they cause that reaction in them, and learning how to 'be happy' staying away. Why are people that way around me, when I know that I cause that reaction by the way I behave and that's why I do it. They just need therapy because I'm confused it should harm them less even though it puts a foot on their neck daily via its reach.

But you know I'll spend that energy trying to eat and brush my teeth for the fortnight instead given how their last 'good intention' and the ones before ended up for many us.

It seems to escape people what a difference a kind word or ounce respect could do (in the real world - and no, VR-ing that because you can't be arsed isn't a 'replacement') vs trying to outsource ours of tech so we don't have to be touched by the real people in that way. I wonder whether any of those involved with commissioning this know who we all are behind their BS idea of the label.