Patients would trust their physician more, if (a physician) is able to tell his patients when he visits them not only about their past and present symptoms, but also to tell them what is going to happen, as well as to fill in the details they have omitted”.Hippocrates wrote
We all have physical symptoms – painful or uncomfortable feelings in the body – at different times in our lives. Usually they get better on their own, without any treatment. If they don't, we might ask a doctor about them. Usually a physical cause can be found - but sometimes it can't, even when blood tests and x-rays or scans have been done.
Symptoms like this are common. They can be called “medically unexplained symptoms”, because they are not due to a physical illness in the body. However, they can be explained, but to do this, we need to think about causes that are not just physical.
The medical method used today has endured since Hippocrates time; diagnose based on physical symptoms, then prognose based on prior to similar cases. When we visit our doctor’s office, we expect our doctor to explain to us why we feel ill, how we will feel in the future, and what steps we can take to feel better. Our health providers and health systems are well-equipped to deal with diagnosable diseases where pinpointing a distinct etiology allows an entry point into which the disease is explained, treatment plans are suggested and probable outcomes are offered. Yet, for millions around the world who are affected by medically unexplained physical symptoms (MUPS)— conditions for which the medical majority has not adopted an exact cause, navigating the healthcare system is a struggle as these patients encounter barriers to obtaining a diagnosis and earning status as credible patients.
Although many symptoms are included under the MUPS umbrella, one of the following 4 are targeted by pseudoscience by “doctors” who do not believe patients with Myalgic Encephalomyelitis (ME), Fibromyalgia (FM), and Multiple Chemical Sensitivity (MCS), Chronic Fatigue Syndrome (CFS) are physically ill. Patient complaints that are not attributed to an identifiable cause, such as findings on medical tests or physical examinations, present significant challenges to the patients who suffer from these conditions, to the providers who are expected to treat them, and to the healthcare system where cost containment is a major priority.
For patients, there is a struggle to earn credibility among providers who may perceive their symptoms as less debilitating than symptoms occurring within the context of a hard pathophysiogical finding. In the absence of terminology those newly diagnosed report feelings of invalidation, guilt & hopelessness. Moreover, some providers might suggest that the illness is entirely psychological which become's stigmatizing and inequitable, especially given the fact that most mental healthcare is positioned outside the boundary of medical coverage. Even the labelling of certain MUPS conditions is offensive and trivializing. For example, some people still flippantly refer to Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) as Yuppie Flu which implies that the condition is simply “a fashionable form of hypochondria”.
For providers, there is potential for conflict to arise in the consultation room when doctors are unable to locate a biomedical origin to validate the patient’s debilitating pain. Reports of physician frustration & patient dissatisfaction are well documented. Furthermore, without a clear explanation for the symptoms, clinicians often have disparate views regarding appropriate treatments and may refer patients to various speciality domains. It has been suggested that the diagnosis a physician gives a MUPS patient aligns more with their specialty than the actual differences between syndromes. Interestingly, when polled, mental healthcare providers are more likely to view Gulf War Syndrome as a physical illness compared to general practitioners who are more likely to view the syndrome as a mental health disorder.
For the healthcare system, MUPS patients are ‘costly’ patients. Despite almost double the amount of specialist consultations and overnight hospitalizations, 25% of MUPS patients compared to 11% of non-MUPS patients reported unmet healthcare needs. Furthermore, an estimated 40% of MUPS patients are unemployed. While there are no studies that have directly looked at the costs of MUPS to the economy, the total economic cost from ME alone in the United States is estimated at $17 – 24 Billion annually.
Despite these significant challenges to patients, providers and our healthcare system, the matter of patient illnesses that lack accordance with medical findings is not a new phenomenon. Our illness, a subjective deviation from our perceived state of normal and the prompt for seeking medical care, is understood by Western medicine only when the health practitioner is able to codify our illness to disease. The bridge from illness to disease is cemented during the diagnostic encounter. It appears that as chemical, imaging and cytological techniques improve and medicine as a whole becomes more skilled at pinpointing an exact biomedical cause for various illnesses, MUPS patients are further dismissed, displaced and discredited as ‘real’ patients. The provision of more equitable care for MUPS patients starts with a restructuring of how MUPS patients are treated in our healthcare system.
MUPS patients are a population group who have multiple social determinants of health acting on them and their care should involve a collaborative approach that bridges silos between researchers, physicians and patient communities. It is important that MUPS conditions are regarded as debilitating illnesses that affect millions of people worldwide. Empowering patients with lived experiences to share their stories can help MUPS patients garner social legitimacy and counter stigmatizing notions, while promoting more empathetic care within the medical community. It can also engage specialists to collaborate and inspire new scientists to enter the field.
In the USA, though some research centers such as the Stanford ME & CFS Initiative are making notable strides in MUPS research, equitable care and access requires that public investments are made to support scientific research. When compared to other medical conditions with similar disease burdens, NIH funding for ME is significantly lower.
In Canada, a panel of reviewers for the Canadian Institute Health Research (CIHR) recently rejected a proposal from ME specialists to establish a research network and clinical standards because they felt that there is no evidence that Chronic Fatigue Syndrome is a disease. The problem lies in the constant use of incorrect terminology between ME & CFS. There are cardinal symptoms with ME that are not covered in the CFS criteria. But, they all fit MUPS.
In the UK & Europe medically unexplained symptoms are 'persistent bodily complaints for which adequate examination does present a clear diagnoses.' Annual healthcare costs of MUS in the UK exceed £3.1 billion and rising. Total costs are estimated to be £18 billion.
Furthermore, appropriate supports must be put in place to help MUPS patients who may also be experiencing psychological distress. The association between psychological distress and MUPS is supported by an extensive literature. The debilitating pain caused by some MUPS conditions have the potential to severely impact one’s quality of life. For example, some people who suffer from severe ME need help with instrumental activities of daily living and an estimated 25% of sufferers are housebound or bed-bound. Integrating on-site mental health professionals can help but treating any of these disease as purely psychosomatic is extremely dangerous and exacerbates the patients health. Education and training general practitioners is a must to ensure that mental health supports are integrated into the care model as a complement to treatment rather than presented as the cure.MUPS is a complex disorder that requires a high degree of commitment from all parties involved. As MUPS research advances and more knowledge accumulates, health providers must develop better ways of treating the segment of the population who, for a long time, have felt ignored and pushed outside the peripheries of science and medicine. To help reconcile the current inadequacies of how MUPS patients are dealt with in the healthcare system, establishing collaborative supports and ensuring these patients are heard and respected is a necessary first step.
Barriers to Diagnoses of and recovery from Medically Unexplained Physical Symptoms “MUPS”
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness; https://www.ncbi.nlm.nih.gov/pubmed/25695122
Jose G. Montoya, MD, is the head of the ME/CFS Initiative at Stanford University. http://med.stanford.edu/chronicfatiguesyndrome.html
Chronic Fatigue Syndrome a real measurable illness say researchers. https://www.ctvnews.ca/health/chronic-fatigue-syndrome-a-real-measurable-illness-researchers-1.2257005
Sara Husni; a Summer Research Analyst at the Ivey International Centre for Health Innovation and a recent graduate of Western University with an Honours Specialization in Health Science. https://www.ivey.uwo.ca/healthinnovation/blog/2017/11/treating-patients-with-medically-unexplained-%20physical-symptoms-mups/http://forums.phoenixrising.me/index.php?threads/mups-make-an-apparence-in-canada.49991/
Trudie Chalder (PACE Author) http://www.eabct2017.org/en/Trudie-Chalder.html
Trudie Chalder http://forums.phoenixrising.me/index.php?threads/trudie-chalder-pace-author-cfs-mups-13-16-sept-2017-slovenia.52159/Medically Unexplained Illnesses UK; https://www.nhs.uk/conditions/medically-unexplained-symptom
Guidance for Health Professionals in the UK for MUPS; https://www.rcpsych.ac.uk/pdf/CHECKED%20MUS%20Guidance_A4_4pp_6.pdf
Psychology of medically unexplained symptoms: A practical review https://www.tandfonline.com/doi/full/10.1080/23311908.2015.1033876