Is the research on malingering reliable? Or is the methodology flawed?

Recently, I saw an S4ME discussion about a Reddit thread, and in the Reddit thread, a doctor accused people with ME of subconsciously making themselves sick for secondary gain. That inspired me to look up research on malingering. Disturbingly, most papers claim malingering is very common. For example, this paper, Estimated Costs of Malingered Disability, claims around half of people applying for Social Security Disability in the US are malingering.

That's patently absurd and it doesn't align with my experience as a person with chronic illness, and knowing other people with chronic illness. Most people denied SSDI are still not working 5 years later. And I hear many accounts of people with terrible diseases being denied disability.

The "secondary gains" associated with getting SSI or SSDI are pretty slim. SSI benefits are, at most, 75% of the poverty level, the current maximum is $914/month or $10,968 a year. The average SSDI benefit is very low, with most 23.5% of normal SSDI recipients live in poverty, with the "average" (mean?) being $1358.30/mo or $16,300 a year, but the distribution has a significant right skew, so the median is lower. That's equivalent to working full-time (2000 hrs/yr) for $8.15 an hour, which is only 1.12x the $7.25 federal minimum wage and below minimum wage in 30 states. It's 30% of the median wage.

Nobody would quit their job making $50,000 a year, fake their symptoms, and spend potentially years trying to get SSDI, so they could receive a benefit barely above poverty. It would be far easier to just get a low-stress or part-time job.

I'm highly skeptical of the claim that malingering is common because the benefits are small, it's inconsistent with the experiences of people with disabilities, and because patients' claims about their symptoms are essentially unfalsifiable.

Many of the studies are either based on memory tests, or expert opinion. I wonder what flaws could exist in the memory test. And those experts don't have a solid benchmark to go off,, so their decisions are based entirely on their own biases. It's well known (among us, not doctors) that many impairments are inconsistent: They fluctuate, affect some areas of functioning more than others, exhibit uncommon presentations, lack outward signs entirely, have outward signs that aren't commensurate with symptoms, or are of unknown cause. Many doctors will label a patient as malingering because their symptoms are inconsistent, but people with lived experience of chronic illness, or mental illness, know inconsistent symptoms are the norm, not the exception.

If you wanted a more reliable study, you could ask families of people with chronic illness. Statements like, "He only brings his wheelchair to doctor's appointments where he mostly sits, but goes shopping for hours without it" would point at someone exaggerating symptoms, but statements like, "She stopped taking her kids fishing because couldn't stand for long enough" would reinforce the veracity of the patient's claims. However, this method find false negatives if family members conspire with the malingerer, and false positives due to inconsistent symptoms and disbelieving relatives.

 

Very good idea to provide the social security payments here.

Appalling, but not surprising that some doctors still see pwME as malingerers. Good grief! They should read up on some of the research first, and reconsider making uneducated, nasty comments.

They can check out the 2015 IOM/NAM report on ME/CFS. Look up the NICE guidelines. The CDC info. There's lots of evidence based info out there proving ME is a physiological condition.

The idea pwME are making themselves sick for secondary gain is ridiculous. As you say @RedFox, why not just get an easier, low stress job, rather than jumping through bureaucratic hoops to get assistance at, or below the poverty level.

I've read a couple articles about Canadian pwME who are considering, or have actually been accepted into the assisted dieing program we have in Canada. If I recall correctly, there were articles about 2 separate pwME. Their reasons for considering the assisted dieing route include their life in poverty, and their life with ME. This is what pwME can be driven to!

Secondary gain - absolutely ridiculous!

 

Well, the argument that it's easier to get hired in a couple weeks to deliver pizzas for $15/hr makes it unlikely a rational person would fake illness. However, the doctor in that thread claimed pwME subconsciously made themselves sick. Which I don't think is a falsifiable statement. There's no evidence whatsoever to support the assertion that a large number of people w/chronic illness subconsciously make themselves sick because they're tired of life's responsibilities.

If this was true, ME would be strongly associated with poor mental health, general unhappiness, low social class, poor job satisfaction, etc. People who get ME would be mentally "checked out" and oddly comfortable with how their life turned out. Onset may be gradual. If the main source of aversion was stress, pwME would find it easier to do fun things than stressful ones.

What we actually see is that ME is most strongly associated with infections, young age, and female sex, a similar pattern as autoimmune disease. Often ME has a very sudden onset. As far as I can tell, pwME are as likely as anyone else to have a good career, family, etc., pre-illness. Everyone I know with ME is extremely dissatisfied with their current quality of life, and would immediately agree to be cured if a genie offered them.

 

Quoting @Sean's post in another thread today.

 

Agreed.

Your words especially hit a chord for me regarding stressful activities versus fun ones.

PwME, can't set aside feeling horrible to go out and have fun. That is, if a pwME is not bedridden, and is able to go out of their home.

All the symptoms come with us. There's no holiday.

ETA: fixed typo

 

Wow. That last paragraph is amazingly right. How did that happen???!

Others may only see someone who is benefitting from being off work, and getting social assistance for goofing off. The imagned secondary gains for being ill. Nothing could be further from the truth.

The losses with ME are multiple: health and capabilities greatly impacted, social circle diminishes, friends and family abandon the pwME, finances are reduced, future plans are lost, career gone, reputation and respect are severely impacted, care and consideration as @DigitalDrifter said in another thread are not provided, and overall, quality of life is severely reduced.

Perhaps, just perhaps, if others could understand a fraction of what pwME have to live with, they wouldn't be so quick to judge.

 

I don't know about methodology but there should be no conflation of the term 'malingering' with imputed medical causality - physical or psychological. Malingering has very specific meaning and although that could encompass exaggeration of a medical condition evidence for it should not in anyway be equivocal. Malingering is an activity amounting to fraud, punishable under criminal codes where benefits are claimed, although the term itself is not (at least in English & Scots Law) used to define a specific offence, under Anglophone military codes it is a long established specified offence attracting imprisonment and ejection from service. From a patient perspective Malingering should only be used to refer to incidents where there is evidence that is capable of standing the test of Criminal Law i.e 'beyond a reasonable doubt' and any other connection of 'malingering' to illness or disability should be resisted.

Fraud clearly happens and is wide spread in society, and it is unlikely that insurance and welfare contexts are immune, the reasons for fraud are multiple and complex, understanding why an individual might choose to fake an illness or disability is a matter for criminology not medicine, academics who conflate criminality with illness and disability are acting outside of sound ethics and such work shouldn't be accepted as valid.

As noted above secondary gain is a dubious concept, rolling it up with malingering is doubly unscientific.

Now fallen out of favour but an important conceptual link between malingering and false illness belief is "Functional overlay"

FUNCTIONAL OVERLAY', AND ILLNESS BEHAVIOUR IN CHRONIC PAIN: DISTRESS OR MALINGERING? CONCEPTUAL DIFFICULTIES IN MEDICO-LEGAL ASSESSMENT OF PERSONAL INJURY CLAIMS
SciHuB: https://sci-hub.se/10.1016/0022-3999(95)00040-p

'Functional overlay' and 'illness behaviour'

"It has been argued that 'functional overlay' as frequently found in medico-legal reports is unhelpful, and at times frankly misleading. It is used to indicate a 'nonorganic' aspect of the client's presentation of signs and symptoms. Frequently this 'pseudodiagnosis' is made, not on the presence of clearly identifiable psychological distress or dysfunction, but because of the absence of physical findings considered adequate to explain the level of dysfunction or continuing incapacity of the client. The use of the term 'functional overlay' should be discontinued.

The term 'illness behaviour' is also widely misused. The so-called 'nonorganic signs' test or behavioural signs test [43] for example has been widely used as an index of so-called 'illness behaviour'. This is often identified by the presence of guarded movements. These are commonly associated with fear of movement or harm, and before such behaviour can be interpreted as an indication of faking, general distress and specific fears have to be examined. These signs should be considered as no more than imprecise screening tests and in fact discriminate between distressed and nondistressed patients less well than psychometric measures [50]. If psychological features have been identified in the client's response to examination, or in response to previous treatment, they should be described as 'behavioural symptoms and signs'. The term 'nonorganic' should no longer be used."

A further historic and wholly unscientific link from actual disability to non legitimate 'malingering' came in the form of the UK Royal Air Force WW2 era designation Lack of Moral Fibre

 

It's not valid and entirely political. Truth is, the main reason why there is so much poverty, suffering and hunger is because there are people who oppose solving them. It's no longer an issue of ability, it's entirely about will. But it used to be that we simply weren't able to, we didn't produce enough things and food for everyone, so people had to justify to themselves why it was so, and it's very easy to decide that it's simply because some people deserve nothing more.

Modern politics are no different than they were 200 years ago, only the economic and technological contexts have changed. But the attitudes haven't, and medicine is not a separate part of society, it has all the same biases and ideologies as everywhere else. It's very easy to think of people suffering as deserving it, and illness and disability are no different.

Nothing will change until humanity reaches abundant prosperity, the future we see in Star trek, where no one wants for something simply because it's trivial to provide for everyone. We're just not there yet, so the old excuses hold firm. This particular bigotry is simply a manifestation of the Just world fallacy, and it has the same roots as caste systems. Not everyone believes in a hierarchy of merit, that some people deserve everything and others nothing, but more than enough do.

Malingering obviously exists, but the disability social safety net is built to be so punitive as to not be worth it. So it isn't. At most it's extremely rare. What most doctors are confusing with this is that patients complain a lot about poor healthcare, oblivious to the fact that they are usually absolutely right about it, they just can't take the criticism.

 

I'm not sure about extremely rare, all parts (at least in the UK) of the Welfare system are targetted for fraud, however what does seem to be rare is fraud by people who actually are disabled or chronically ill, for them the problem is underpayment or no qualification for benefit. Malingering, which we could call disability fraud, poisons the system, disadvantaging people who are actually ill by adding to the climate of distrust.

Fraud and error in the benefit system Financial Year Ending (FYE) 2022

 

When you think about it, malingering gives you such a poor return on investment that if you choose to go through all the trouble and manage to obtain disability for it, chances are you have an undiagnosed mental illness (which you would likely get disability for anyway) or, ironically, an illness like ME that denies you disability claims. I know many ME patients that had to fake other illnesses as that was the only way to get the help they needed to survive.

I remember reading a forum back in the days where people were discussing how to fake autism to get the "autism bux" (disability). The thing is, those people were spending their life at home with their parents not working or doing anything productive so I doubt they were mentally well to begin with, clearly something was wrong with them.

It's really hard to imagine a normal person malingering when they can do just about anything else and get a better return on time, effort and money spent.

Of course, none of this matters if you are a narcissistic doctor just itching to dunk on people. 50% of patients are malingerers, why not.

 

I'd trade the rest of my life in for just 3 months of good health!

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Fraud, if successful clearly offers the potential for a significant gain on investment - if someone receives income to cover the limitations of a disability they don't have, then they are free to make use of their lack of incapacity in ways that a disabled person isn't. Concern about fraud (malingering) by Insurance companies and Governments isn't irrational or malicious, though of course both private and Governmental interests may behave maliciously, but fraud happens and its occurrence draws huge public opprobrium. The issue for disability advocacy is not whether fraud is a concern but where the burden for dealing with fraud should lie, too often it is disabled people who carry an unfair share of the burden by having to endure onerous and perverse assessment systems.

IMO disability advocacy has been too often focused on trying to demonstrate that concern about disability fraud is not warranted (e.g tiny compared to tax evasion) and not accepting that public concern about injury/sickness/disability fraud isn't based on numbers but on a gut level response to the goodwill of society being exploited. A headline of "woman found guilty of £30,000 sickness benefit fraud" stirs far more resentment than "£3 billion in taxes avoided by wealthy" and that aspect of public perception isn't going to change any time soon; what could be changed is the public perception around the burden of dealing with fraud but that is going to require, at least in the UK, a sustained change in focus across all disability advocacy.

 

It's the same for any criminality, those who are good at it are not seen to be doing it and so get away with it while those aren't good at it are obvious and so get caught. How much fraud there is any one system is hard to tell but there are more than just monetary gains to be had from disability fraud, it provides a particular kind of official identity that can be useful in obscuring other criminal activity, which in turn makes sickness and disability a class of concern to the police, especially in deprived communities where there is often a police perception that everyone is 'at it'. Of course this is profoundly unfair but advocacy isn't going to change the views of law enforcement, politicians or public by minimising fraud, something more sophisticated is needed.

 

And that's not even hyperbole. I studied political science for a bit. Liked it, but I didn't see a career path.

Intro to politics is all ancient Greece politics, who faced the same issues as their ancestors, they were just the first ones to write them down. And they're all the same issues that we face today. The rest is just variations of the same themes, mostly varying because of technology or access to natural resources. It's really all the same. Issues of justice, of what is right and wrong, who gets to decide and for whom. Probably because there aren't any good political solutions, other than simply making the problems irrelevant with technology. Food scarcity used to be an issue everywhere. Where it isn't anymore isn't because of political solutions, it's because technology allowed us to do surplus of food. It's technology + economics.

And where people still face hunger, it's not because their politics are primitive, or especially corrupt, it's because they don't have the benefits of that modern technology, although usually because of politics, but not necessarily their own. There's a huge difference between owning and operating the technology and its product being dropped on your head from distant benefactors, who could just as well stop doing it at any moment for any reason.