This article examines the contestation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Lacking consistent diagnostic definitions, agreed-on biological indicators, or approved treatments, ME/CFS is an incompletely medicalized condition. It is defined by intractable and debilitating exhaustion after any form of exertion. Through an ethnographic exploration of an American ME/CFS patient activist group, I develop the concept of “recursive debility.” Symptoms form the very basis for disease activist groupings in the absence of biomarkers, but they also present a significant barrier to traditional forms of activism. Ironically, then, debilitation blocks the means through which debilitation might end. Patients contest systems of knowledge but always in bodies that experience exhaustion without end. This article presents a disability studies intervention in suggesting that the recursivity of debility demonstrates the profound interdependence of the bodily aspects of impairment and the sociopolitical aspects of disability. [ME/CFS, chronic illness, medicalization, symptoms, debility]
Shame that Sci Hub isn’t doing recent articles any more. Is there a control group in the shape of a group of patients who are also under threat from a group of vested medical interests, but whose disability doesn’t prevent activism, and who therefore regularly win battles over funding and public health policy? A comparator would make the notion of recursive debility rather more compelling.
But it’s still a good question to ask, and from the abstract at least, looks to be on the side of the angels, and is perhaps unfairly categorised with BPS research. It looks more like social science predicated on anti-BPS premises.
I find this a really odd idea. It seems to suggest that all you need to do in order to get answers to intractable biomedical problems is shout loud enough.
I'm not sure I accept that ME patients have significant problems in engaging in patient activism. Even severely ill people have made major contributions over the years, and effective activism isn't always about going on marches and waving placards. We've been up against a particularly influential set of vested interests, true, but we've probably fought as vigorously as any illness community of a similar size.
To clarify, I was just trying to wade my way through the jargon to find some meaning.
I don't actually agree. As you say, it shouldn't be about who can shout loudest, and we have some really good advocates.
What we struggle with is people who deliberately put barriers in the way recognition that ME is not psychosomatic, and deliberately limit research funding.
I'm not sure I accept that ME patients have significant problems in engaging in patient activism. Even severely ill people have made major contributions over the years, and effective activism isn't always about going on marches and waving placards. We've been up against a particularly influential set of vested interests, true, but we've probably fought as vigorously as any illness community of a similar size.
Patient activism has been hobbled for the past thirty years because we are not able to fight for recognition. What some patients have managed to achieve is wonderful and incredible considering much of it has been done while bed ridden.
I can't be the only person to go to sign a petition or send a form letter to my MP but be defeated by illness. Most illnesses do not need patients to be advocates but that is a different position. Let's face it, despite heroic things being done we have not managed to get mainstream medicine in the UK to have a clue about how ME actually affects us!
Our level of ill health has meant that the charities were never forceful but after ME became CFS the ones who were most likely to be active in local charities were the ones least likely to have ME. The widening of the definitions should have been fought tooth and nail but instead the biopsych school were given decades to become entrenched in the establishment so even with a NICE guideline that is good (even if not great) there is not the change we need.
Compare that with AIDS where patients could protest and get healthy people to fight with them to demand research money and fight the stigma.
I'd argue that it's the stigma of the disease that has been the biggest hurdle to activism, not the debility.
Think about people like Michael J Fox for Parkinsons. He had symptoms that made it harder for him to advocate. But with ME/CFS, high profile people with the disease often don't want to admit to having it, or are given some other name for their illness. People are initially confused and somewhat embarrassed, when the doctors they see are suggesting the illness can be fixed by thinking positively, and that it's really not that much of a big deal, that it's just a matter of being over-sensitive to every day sensations. Parents don't want to shout from the rooftops when the psychologist says their child has conversion disorder - even with no history of mental health issues in the family, tackling that can feel like inviting criticism.
We often lose the networks we had. Yes, our lack of energy to engage is part of it. But, I think a big part of it is, in our embarrassment, and our shame that we couldn't keep up with our responsibilities, we stopped talking to people. And some people wrote us off as having some lazy person's mental illness.
By the time we've emerged from the initial haze of 'what the hell has happened?' and have learned enough about the politics and the disease to usefully advocate, it's harder to re-establish the connections - and, even if we reach out and try, there's still that stigma to deal with. If ME/CFS can be fixed by getting off the sofa and not ruminating so much, then why is there a need for money to be spent on biomedical research?
And in our desperation, some of us latch onto weird ideas and try to promote them, and so we add to the stigma that surrounds ME/CFS.
I think, if no one was suggesting ME/CFS is a psychosomatic condition, our disability would not be a major hurdle in advocating. For a start, we'd have a whole lot more healthy allies advocating with and for us.
It's a bit hard to know from the abstract, but, having looked at one of the links Snow Leopard provided, Emily probably does deal with things comprehensively, including exploring the issue of stigma.
It would be easier to get people onside too. The characterization of us as unhinged terrorists striking fear into the hearts of hero researchers whose only crime was trying to help us made it very difficult to admit to having ME.
Things have improved since then. People fund raise for those who are unable to do it for themselves. No one I know with MS has to be their own doctor either.
The sickness role they talk about means that outsiders have compassion, patients are supported and their debility is taken as a sign they need more help rather than seen as a moral failing. We have lost out both ways. No one has been willing to champion us but we are too sick to change the narrative on our own.
Of course, there has been notable exceptions among patients, lay people and researchers and it is thanks to them we have gotten this far. I will be eternally grateful for this as it lessens the fears I have for my children and grandchildren.
The language is more accessible than expected - kudos to the author for that.
I think that focusing on the unique challenges that pwME/CFS face due to PEM is interesting in theory, but I’m not sure if I agree with the running analyses here.
———
It starts off with getting PEM wrong, which is concerning given the topic of the paper:
After the protest—which required physical activity most would consider minimal—many would be “crashed” in their beds for weeks, as fatigue after any form of exertion is characteristic of the impairment caused by ME/CFS.
Moreover, the hallmark symptom is “post-exertional malaise”— most typically, fatigue after any form of energy expenditure, a subjective symptom frequently met with accusations of psychosomatism or malingering.
Later on, crashes are described as «post-exertional fatigue».
Edit to explain:
PEM is not fatigue after any exertion/energy expenditure. PEM is episodes of increased symptoms and/or new symptoms after exertion or stimuli that was tolerated before becoming ill and is out of proportion to the «trigger(s)», and it excludes effects of exercise intolerance, DOMS, rapid fatiguability etc. Fatigue after exertion is common in many diseases. PEM is not.
People with ME/CFS experience episodes when they are much more ill and cannot do as much as usual following amounts of physical or mental exertion or sensory stimuli that they could easily tolerate before the illness. This is called post-exertional malaise, or PEM. PEM is the hallmark of ME/CFS and important for diagnosis.
The main features of an episode of PEM are:
A person feels more ill. Their usual symptoms get much worse, and new symptoms may appear.
They are much less able to function. They need to rest more, or even to lie still in silence and darkness, until it passes.
The onset of PEM is typically delayed for hours or up to several days after it is triggered.
The length and severity of an episode of PEM are out of proportion to the amount of exertion or stimulus that triggered it. An episode can last hours, but more often lasts days, weeks or longer.
Symptoms of PEM
The word 'malaise' is a medical term meaning 'feeling ill'. People with ME/CFS already feel ill, so with PEM, 'malaise' means they feel more ill than usual. Existing symptoms such as exhaustion, problems with thinking, difficulty being upright, and pain are likely to be worse. Many people also get extra symptoms that they only have in PEM, such as headache, sore throat, nausea or flu-like symptoms.
One person's pattern of PEM symptoms may not be exactly the same as another's and may change over time and with different triggers. The type of trigger is often unrelated to the PEM symptoms that follow. For example, a person's PEM triggered by concentrating on reading might include muscle pain and unsteady walking.
———
I’m not sure I like the framing here:
Chronic illness has sat alongside, but typically struggled to be fully integrated within, disability studies’ frameworks for understanding bodily disablement: What about bodies that are sick (Wendell 2001), or of ME/CFS activists who want to be recognized as having a disease?
The need for society to recognise ME/CFS as a disease (and everything that follows with it) comes from the fact that ME/CFS is a disease (or a syndrome, not that it matters in this context). It has nothing to do with the desires of the patients. This strays dangerously close to the secondary benefits narrative about ME/CFS ans should have been clarified further.
———
The following section makes it out like it’s the lack of scientific facts that is the cause of ME/CFS not being recognised properly. That is not the case. The cause is society’s inability to distinguish (wrong) arguments made by scientists from facts. The facts about ME/CFS have been clear all along, but nobody have bothered listening to them and we’ve ended up with an ocean of misinformation.
Scholars have frequently focused on epistemic battles between patients and experts that emerge from this division of bodies, wherein the production of scientific facts becomes a key front in the battle for legitimacy (Dumit 2006).
Rather than describing a cascade, I envision the recursivity of debility as a knot that ties disability and impairment together and sustains the present status of ME/CFS as a contested biomedical issue that, at present, lacks political urgency. Recursive debility means that the need for political action and the reality of profound exhaustion—and by extension the social aspects of disability and the medical aspects of impairment—fall back on each other. This maintains both scientific uncertainty and its ramifications for those who live it out in exhausted bodies Recursive debility is a tightly bound knot that is difficult to untie, a cycle that is hard to break—and moreover, to do so would require energy, the precise thing that people with ME/CFS lack.
This passage appears to be arguing that help will only be given to the people that themselves are able to fight for it. I don’t think that argument holds up under scrutiny - people often help other people without them demanding it.
It also talks about a cycle that has to be broken, presumably by the pwME/CFS themselves. Why is that responsibility placed with the pwME/CFS and not with the people in power - the ones that have an ethical, moral and at times legal obligation to do something? This could have been explored further.
———
Because these clinical signs are various and specialists are few and far between, the condition is surrounded in doubt. Because of this doubt, research is seriously underfunded.
Has the author just casually concluded in the middle of the text about why ME/CFS is underfunded? That it’s only or primarily because of the lack of biomarkers that means we have to rely on clinical signs? What’s the basis for this remarkable claim?
In a comment to a meeting of ME/CFS patients and researchers, an official from the NIH stated that they typically reject proposals to investigate ME/CFS because they get so few and the ones they get are low quality.
Now this is a completely different argument: the funding application are supposedly rejected due to the low quality of the applications. That has nothing to do with the lack of biomarkers.
Although this argument is also problematic, because we see so much garbage research being funded and published every single day. I think exploring if there is systemic discrimination here would be an interesting avenue. It’s a shame the author didn’t reflect further on this point and the other excuses that are often given.
———
I think the section on biomarkers would have benefitted from a definition of what a biomarker is. This recent discussion comes to mind:
I think 'biomarker' just emerged as a buzzword and nobody really new what they meant by it. The idea of something that marks the biology associated with symptoms is probably fair enough but people then confused it with 'diagnostic test', the confusion being compounded by widespread misunderstanding of what diagnoses are for.
I think biomarkers first became fashionable in the drug industry as objective measures of change - like CRP or blood sugar.
The hope of a biomarker was the hope that ME/CFS could become a disease-in-itself: a single, unique biomarker would prove that someone really has ME/CFS.
Based on this, it sounds like they want a diagnostic test. But not primarily for what a diagnosis is actually for: predicting future health.
It would have been interesting to see a more in depth discussion about the issues caused by the rest of society’s (over)reliance on diagnostic labels.
———
The section that covers a question at a conference about a potential connection between Lyme and ME/CFS highlights one of my issues with humanities models:
In both cases, I was struck by the immediacy with which comorbidities were dismissed. It was as if they feared one diagnosis threatened to destroy the existence of the other. Even when they existed in the same body, ME/CFS and its comorbidities needed to be made separate in order to avoid “clashes and confrontations” (Mol 2003: 6) between them.
This is certainly not why the different concepts have to be held separately - it’s because they are different. Lumping things together is rarely a good idea in medicine. For the individual patient we have to deal with everything they are experiencing, but that is very different from how you need to do things in research when you are trying to figure out what’s actually wrong.
This perspective is voiced by Joel later on, so why does the authors single out another interpretation earlier just because it aligns with some framework?
———
The section about Christine having to pay loads of money for tests and completing a CPET that made her worse in order to receive benefits highlights an important challenge many face.
But in the absence of a standardized, readily available diagnostic test, Christine was only able to prove debility in ways that sustained debility. She became knotted in a recursive process.The thing on which legitimacy of debility hinged was also the thing that debilitated. The biomarker promised to be a currency, but it came with its own price. It was Christine’s trying time with this Faustian bargain that led her to seek out others who shared her experience.
Although this makes me even more confused about what «recursive debility» is supposed to mean.
———
In symptom talk, the function symptoms serve is not necessarily to get to the bottom of a medical problem. Symptoms serve as social prostheses (Biehl and Moran-Thomas 2009: 271), articulations that place the symptom talker within the social world of people with ME/CFS.
Another example of weird frameworks that do not contribute anything.
———
Without physical presence in civic society, people with ME/CFS experienced debilitation recursively. No bodies in the streets, no recognition, no research funding. No research funding, no treatments, no bodies in the streets.
Again, this strikes me as a very simplistic analysis. Is that all there is to it?
———
The sad part is that the conclusion actually gives a much clearer, more nuanced and at the same time broader account of some of the things that have gone wrong and the challenges pwME/CFS have faced for decades.
Shame that Sci Hub isn’t doing recent articles any more. Is there a control group in the shape of a group of patients who are also under threat from a group of vested medical interests, but whose disability doesn’t prevent activism, and who therefore regularly win battles over funding and public health policy? A comparator would make the notion of recursive debility rather more compelling.
But it’s still a good question to ask, and from the abstract at least, looks to be on the side of the angels, and is perhaps unfairly categorised with BPS research. It looks more like social science predicated on anti-BPS premises.
or is it human nature/the flaw of systems that those who are most vulnerable are sought out by these types and certainly once someone realise vulnerabilities or things that are effective and gotten away with then the buttons get pressed to the max.
exhaustion prevents activism but there are also other factors going on that prevent it too and will affect many other conditions.
How many pwme actually have 'supporters' who genuinely are caring enough people they'd lift a finger on this who aren't already having to give more than they have in order to support the person directly to survive whether it is help with forms/systems or 24hr care.
ie proper allies who care enough to have read past the quite transparent now untruths to realise it isn't 'MUS/fatigue/tiredness' and all the other tropes.
I'd argue that it's the stigma of the disease that has been the biggest hurdle to activism, not the debility.
Think about people like Michael J Fox for Parkinsons. He had symptoms that made it harder for him to advocate. But with ME/CFS, high profile people with the disease often don't want to admit to having it, or are given some other name for their illness. People are initially confused and somewhat embarrassed, when the doctors they see are suggesting the illness can be fixed by thinking positively, and that it's really not that much of a big deal, that it's just a matter of being over-sensitive to every day sensations. Parents don't want to shout from the rooftops when the psychologist says their child has conversion disorder - even with no history of mental health issues in the family, tackling that can feel like inviting criticism.
We often lose the networks we had. Yes, our lack of energy to engage is part of it.
they potentially make a good point if it is there outright in that whilst those who are less ill are still for the most part so ill-supported vs the debility and committments they are dealing with that will be a factor, but the 'stigma' and further risk of being 'out' and the huge variability in debilitation levels combined with the lack of acknowledgement (so somehow at the same time talking about how much function is affected when more severe could be used against you in employment whilst simultaneously then doubted in giving support that doesn't harm instead of help)
I would probably say that having a treatment programme that explicitly caused/causes harm is probably one of the biggest issues because it has acted as a massive existential threat. Argue against it and have these potential threats levied at you so you become more devastatingly disabled and can't at all. But at the same time that having been turned into an industry most people might have a mate they know either in or wanting to go into as a more chilled out job, combined with rhetoric sewn thru all sorts of vocations in their training of 'behavioural assumptions' that aren't true or criticaally looked at... somehow puts people just existing in their truth not just 'at odds' but as if anyone offering help or validating the help needed would be somehow being political within their own friendship group/family etc.
those in most vocations won't even help individuals (other than in the bps limited way), even when they know based on common sense and intelligence meaning they can see but then choose to unsee the issues, due to claiming the 'mental health can't be sure you aren't the one who is deluded' and how it will affect me given I work with... they want to keep their job and position in society.
was a stroke of extreme weaponisation - noone can or will help say someone 'isn't mad' no matter how well they've known them you know 'just in case' [someone else says they are being hoodwinked by a deluded]. Utter BS from the usual contenders that either their using that category was just 'about stress' or the good kind and not a complete weaponisation of the dirties and worst trope of it combined with no helpful aspect. But then we'd have to have people saying 'they don't believe in mental health' rather than 'it's even more important that that department than even normal health potentially doesn't have any dangerous, harmful misusing areas of it' and the bps twisted it as if calling out harmful actors in an industry is stigmatising mental health illness, which obviously it isn't but is a childish yet effective game.
The issues aren't/help needed is more specific and not the same as someone being able to just have a Macmillan coffee morning in their workplace.
they potentially make a good point if it is there outright in that whilst those who are less ill are still for the most part so ill-supported vs the debility and committments they are dealing with that will be a factor, but the 'stigma' and further risk of being 'out' and the huge variability in debilitation levels combined with the lack of acknowledgement (so somehow at the same time talking about how much function is affected when more severe could be used against you in employment whilst simultaneously then doubted in giving support that doesn't harm instead of help)
I would probably say that having a treatment programme that explicitly caused/causes harm is probably one of the biggest issues because it has acted as a massive existential threat. Argue against it and have these potential threats levied at you so you become more devastatingly disabled and can't at all. But at the same time that having been turned into an industry most people might have a mate they know either in or wanting to go into as a more chilled out job, combined with rhetoric sewn thru all sorts of vocations in their training of 'behavioural assumptions' that aren't true or criticaally looked at... somehow puts people just existing in their truth not just 'at odds' but as if anyone offering help or validating the help needed would be somehow being political within their own friendship group/family etc.
those in most vocations won't even help individuals (other than in the bps limited way), even when they know based on common sense and intelligence meaning they can see but then choose to unsee the issues, due to claiming the 'mental health can't be sure you aren't the one who is deluded' and how it will affect me given I work with... they want to keep their job and position in society.
was a stroke of extreme weaponisation - noone can or will help say someone 'isn't mad' no matter how well they've known them you know 'just in case' [someone else says they are being hoodwinked by a deluded]. Utter BS from the usual contenders that either their using that category was just 'about stress' or the good kind and not a complete weaponisation of the dirties and worst trope of it combined with no helpful aspect. But then we'd have to have people saying 'they don't believe in mental health' rather than 'it's even more important that that department than even normal health potentially doesn't have any dangerous, harmful misusing areas of it' and the bps twisted it as if calling out harmful actors in an industry is stigmatising mental health illness, which obviously it isn't but is a childish yet effective game.
The issues aren't/help needed is more specific and not the same as someone being able to just have a Macmillan coffee morning in their workplace.
I guess on that note the Post Office Subpostmasters situation provides a good comparator
and with the whole new development of only just now those who had similar issues but with the predecessor system 'Capture' on the news at the moment and having to go through the court system 25yrs on when getting the evidence will be that much harder to 'prove their innocence' making it sound like there are those in 'the system' still playing the 'but what if there are some who aren't innocent somehow hiding in there' insinuation or belief 'just putting it there'
So even when the tricks might be assumed as well and truly blown because everyone knows what happened from a TV programme and an inquest it doesn't seem to stop them being repeated as if they are somehow legitimate by some and the 'barriers' from still being held up.
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