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RECEIVING a diagnosis, even a bleak one, can bring relief to patients. But if the disease is “low prestige”, or a solid diagnosis is not available, patients can be left isolated, depressed, lonely, and even retraumatised.
Associate Professor Louise Stone, from the Academic Unit of General Practice at the Australian National University, told MJA InSight that patients with medically unexplained symptoms made up as much as a third of a GP’s practice.
“It’s the patients who have fatigue, non-specific pain, who might fall into the fibromyalgia cluster, or the chronic disease cluster,” she said. “The diagnoses are often quite fluid because they’re about syndromes rather than a solid diagnosis.
“And those patients live in a terrible void, where they’re seen by the community as malingering and not having anything real because they can’t come up with a disease name that anyone believes.”
Speaking in an exclusive MJA InSight podcast, Associate Professor Stone, who is a practising GP specialising in mental health issues, said: “Then of course, there’s a cluster of patients who have terrible backgrounds and multiple layers of trauma on trauma on trauma and it’s, quite frankly, not surprising that they’re turning up with physical symptoms.
“For all of those patients, the disease prestige is very low – they’re often spoken of disparagingly as ‘heartsink’ patients. People put up all sorts of boundaries to manage them or try and exclude them from services because they’re very hard [to manage].
“But they suffer, and they die. And they often die by suicide because the pain becomes unbearable. They’re often excluded from working, they’re excluded from the social world and they suffer greatly.”
Patients with no diagnosis or “low prestige” diseases required a change in thinking from GPs and other practitioners, Associate Professor Stone said.
“We need to think of these patients as a cluster and we need to think strategically about how, as a health service, we’ll respond to those patients.
“At the moment, most of them end up in general practice, but [many] end up not seeking health services at all because they can’t face a situation where they feel their pain is invalidated. They end up not being screened for things and not having their hypertension diagnosed and all sorts of other negative consequences.
“We need to have a non-emotive discussion about how as a community we’re going to respond to that large number of patients – patients with medically-unexplained symptoms can be up to 33% of our patients in primary care. They’re not a small group and they certainly do suffer an enormous amount of illness and disability.”
Associate Professor Stone is the author of a Perspective about disease prestige published by the MJA.
“Disease prestige is the way in which a disease is socially valued,” she told MJA InSight. “Disease prestige doesn’t imply that support is not deserved. It’s just that there’s a hierarchy. There are some diseases that attract a lot of public support and attention, and the public dollar as well, and there are diseases in medicine that we value more highly. If we look at the curriculum of medical schools, we know that some diseases get more attention – cardiology for instance.”
High prestige diseases, she said, were often characterised by commonness.
“That might be because there are more people in the community who’ve had exposure to someone with cancer, for instance. Common things get more support, although that doesn’t always work – emphysema, for instance, is very common but it probably wouldn’t come in under the high prestige label.
“Having someone famous who has had the disease – the Kylie Minogue effect on breast cancer – makes it much more able to be discussed.
“Diseases that you can talk about without shame [are often high prestige]. Diseases shouldn’t be shameful, but people are much less likely to talk about their anal cancer than their brain cancer. It’s much easier to write a public campaign about brain cancer.
“Diseases that make people feel uncomfortable tend to fall down the list as well. It’s interesting what Hazel Hawke did for dementia because dementia was a very low prestige disease, but in the past 10–20 years there has been much more attention.”
High prestige also means more research dollars, she said.
“It gets money, frankly. The publicly funded campaigns, such as the ones from the National Health and Medical Research Council, try very hard to allocate funding according to prevalence and according to burden of disease, but there are always private funds and philanthropic organisations that will lean towards diseases that they believe are important.
“You’ll always get a lean in public funding towards cancers. If you look at most of the research institutes’ websites, they’ll have curing cancer in them fairly [prominent] on their front page because it attracts funding.
“And you can understand why. This isn’t a deliberate thing – we are human, and humans don’t necessarily behave in logical ways. The idea of children dying of cancer is terribly evocative and awful and it’s the reason why we often see children’s cancer spearheading a campaign to raise funds.”
In her Perspective, Associate Professor Stone concluded that: “The lower the disease prestige, the greater the need for doctors to fill the void in validation and support.
“We need to consider issues of justice and equity, not only across populations but also between diseases, and we need to create overt clinical, educational and research priorities that recognise the complexities of funding the breadth of illness that occurs in the community.
“Suffering should not be hierarchical, and care should not be predicated on the prestige that a disease attracts.”
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Gordon Smith, I have Fibro and RA and suspected MS, are you tell me that I and others like me are not worth studying to find a “cure” one day, that the little money spent on us is wasted? If the researchers said that cancer was not curable in the early days so stopped trying we would have a much smaller population and don’t try to tell me that my diseases don’t kill, when the pain gets too much for me it will kill me. Data is unreliable for the mortality rate for Autoimmune disease because it is very badly diagnosed in death, the disease my not be the cause but the medication or the degeneration of the disease my be the cause, RA is systemic which means it effects our whole system including heart, liver, kidneys, eyes, brain etc….
Gordon Smith’s comments typify the problem faced by those who suffer chronic, complex debilitating illnesses of which ME/ CFS is undoubtedly the worst example. Not all illnesses have easy diagnoses or definitive tests anyway and many illnesses, notably MS, were treated as female imagination until the CAT scan proved otherwise.
A complete change of attitude in the medical profession is vital for any hope for real health equality to be achieved. Meanwhile progress is stalled and millions of lives are lost unnecessarily by dismissing their illness.
Science and research is finding the key to CFS,: “The rationale behind using GET as treatment for ME/CFS is that it can reverse a cycle of inactivity and deconditioning, and subsequently reduce the fatigue and disability associated with this disease [2,3]. However, it seems counterintuitive at best to employ exercise as treatment when the hallmark of ME/CFS is a distinctive post-exertional malaise or PEM, whereby even trivial mental or physical exertion can cause a worsening of symptoms and reduced function [4]. As further noted in the 2015 National Academy of Medicine (NAM, previously called the Institute of Medicine) report, ME/CFS is a complex, multi-system disease accompanied by neurological, immunological, autonomic, and energy metabolism impairments [5]. It is not deconditioning nor are its symptoms explained by inactivity. As noted by NAM chair Dr. Ellen Clayton, the debility in ME/CFS is much greater than would be seen with deconditioning [6]. ” http://www.virology.ws/2018/02/05/trial-by-error-letter-to-british-journal-of-sports-medicine-from-cpet-experts/
Gordon Smith, I hope you aren’t a dr because that is a terrible attitude. Perhaps you are a troll. I lost a friend to suicide recently due to that very attitude regarding fibromyalgia. There are things that help. And being believed and cared for and not belittled is important for every human being.
Why aren’t the phsyiological abnormalities that can be measured in people with ME/CFS and fibromyalgia routinely identified and used to mange the disease? Heart rate and physiological abnormalities with exertion are easy to measure? Patients worldwide are pacing with heart rate monitors and both reducing their symptoms and improving their quality of life. There seems to be a chasm in GP’s understanding of exercise physiology and heart rate abnormalities. When presented with something that they are unfamiliar with GP’s turn to their old stand by….the unspoken assumption that anything that they don;t understand or didn’t learn about at medical school must be psychological. Can someone please teach doctors that heart rate abnormalities in response to exertion are a sign of exercise intolerance and an indication of ME/CFS.
This is so so true as anyone diagnosed with ME/CFS or fibromyalgia can tell you. The pain of being accused of malingering is intense when your world suddenly turns upside down, your physical functional capacity is severely limited, mentally you want to do so so much but your body lets you down time after time. There is hope and there are ways to measure, this disease and separate it from mental health disorders. Not that a mental health disorder is any less important but a person with a mental health disorder isn’t harmed by exercise or CBT whereas a person with ME/CFS can be. This link takes you to an easy to do test for people who are suspected of having ME/CFS the physiological information obtained can also be used to manage the disease, reduce symptoms and improve quality of life. A review of the research will clearly show that the NHMRC does NOT fund research into ME/CFS on the basis of disease impact, prevalence or quality of life of sufferers. https://www.healthrising.org/forums/threads/my-2-day-cpet-tests-results-from-2010-ithaca-college.5109/
Hate to be a realist but what you consider ‘low prestige’ diseases appear also to be diseases where funding can not help sufferers. Fibromyalgia, exclusion based diagnosis, etc. are low prestige for a reason. They are medical non-entities, labels we give patients for whom we have not the decency or ability or honesty to say ‘we can’t really help your condition.’ To make these higher prestige and pour money on them achieves nothing. Case in point: dementia. Breakthrough cure anyone?
Medicine has reached a point in the west wher it has essentially found a way to fix everything it can fix. From here on out we will spend billions of follars for zero net gain. We’re all anxious, depressed, demented and in pain (all over). But you just can’t fix that…
very true