Physician Bias Against Myalgic Encephalomyelitis: Too sick to believe?
Documenting Physician Bias Against ME
In order to measure bias against chronic disease patients, Scoles and Nicodemo analyzed r/medicine and compared 21 diseases against myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Using dictionary methods to compare five other chronic diseases: Lyme disease, Ehlers-Danlos syndrome (EDS), Alzheimer’s disease, osteoporosis, depression and lupus, the results showed physicians discuss ME/CFS, depression, and Lyme disease with more negative language than the other diseases in the set. The results for ME/CFS included over four times more negative words than the results for depression.
Source: https://www.sciencedirect.com/science/article/pii/S016726812200347X
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How Sick Are ME/CFS Patients?
ME patients are some of the sickest on earth. Despite not being immediately terminal, patients' quality of life is often most comparable to those close to death.
75% Of Patients With ME Cannot Work (Open Medicine Foundation)
25% Are Housebound And Mostly Bedbound (25% ME Group)
15% Are Primarily Bedbound, 1% Are Totally Bedbound
(Norwegian ME Association)
Up to 20% Die By Suicide (CFIDS Memorial Database)
Only 5% Recover (Standford ME/CFS Initiative)
The SF-36 is a WHO questionnaire designed to assess the mental and physical burden of different illnesses. As the chart below shows ME has one of the highest burdens of any illness.
Additionally, it must be remembered that the average burden in ME is very small compared to the much larger burden that the minority of severe and very severe patients face.
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Post Exertional Malaise Symptoms Are Massive, Common, and Debilitating
The vast majority of symptoms in ME patients present in reaction to exertion. A brief list of some of the most common symptoms includes:
-Reduced functional capacity 99%
-Fatigue 99%
-Cognitive dysfunction 97%
-Muscle pain 88%
-Muscle weakness 87%
-Insomnia 87%
-Temperature dysregulation 87%
-Flu-like symptoms 87%
-Wired but tired 82%
-Headaches 78%
-Increase heart rate/heart palpitations 77%
-Ataxia 77%
-Nausea 62%
-Trouble breathing 58%
-Migraine 46%
-Paralysis 29%
Symptom prevalence from (Lenord A Jason et all, 2019) with less than half of the 39 studied symptoms listed.
https://www.mdpi.com/2075-4418/9/1/26
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Lack Of Medical Training
Only 1/3 of medical schools teach about Myalgic Encephalomyelitis. (MEAction, 2024)
In a study of 132 medical school of which 72 responded to questioning researchers found that under a third clinically covered ME/CFS appropriately and under a third covered it in the curriculum. Only 15% had engagement with research and only 5.6% fully covered the disease appropriately in all 3 areas. (T Peterson, 2013)
Additionally, up until the 2020 Mayo Clinic Guidelines in the US and 2021 NICE Guidelines in the UK, the vast majority of doctors were taught to treat ME/CFS with harmful Graded exercise therapy (GET) and curative Cognitive Behavioral Therapy (CBT) based on the false theory that ME/CFS was primarily a psychological illness.
In many countries such as Australia, official guidelines continue to call for the use of harmful therapies and in other countries like Denmark doctors are taught to routinely misdiagnose patients with Bodily Distress Syndrome (BDS) or other modern labels for hysteria.
Because doctors are taught so little about ME/CFS it increases their resistance to believe the disease is real. Many doctors simply cannot imagine that a disease could be so widespread and dehbilitating and not covered by the medical curriculum.
https://www.researchgate.net/publication/351411944_Coverage_of_CFS_within_US_Medical_Schools
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Sexism & Hysteria
The Legacy of "Chronic Fatigue Syndrome" & the failed biopsychosocial (BPS) model continues to impact physicians today causing them to believe the misinformation that the illness is caused by depression and deconditioning. The BPS model provided a simple and easy-to-understand story of this complex neuroimmunological disease and minimized the illness as something which can simply be powered through.
While this theory is now proven false, it was taught for decades and while modern material such as the 2023 Mayo Clinic Proceedings are helpful they are going up against decades of flawed medical practice that has ingrained itself both in remaining outdated guidelines and in physician culture.
Additionally, it should be noted that some countries have never acknowledged ME in any form, leaving doctors completely without diagnosis or any sort of roadmap for dealing with post-viral patients.
Finally, despite the official changes, there are still no easily accessible medical tests to prove the biological changes present in patients with ME/CFS. This causes many doctors to continue to class it as a mental disorder despite recent guidelines because they refuse to look beyond lab tests and see the full reality of patients and their symptoms.
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Most Doctors Never Meet A Severe ME Patient or Patient Experiencing Post Exertional Malaise
Severe ME patients and patients experiencing post-exertional malaise are generally completely bedbound and highly light and noise-sensitive. Therefore they are unable to present to hospital or doctors offices until their symptoms are less severe.
The consequence of not being seen when severe is that doctors interpret patients as being melodramatic because their direct observations are always of a state far more functional than what patients describe. Patients may report an inability to walk but the doctor sees them take a few steps into the office. The doctor does not see the week of complete bedbound incapacity that resulted from those few steps.
Additionally, this means that when doctors prescribe harmful treatments like graded exercise therapy that force patients into becoming severe the patients often become too sick to report the harm to the doctor. Instead, they simply drop out of contact which the doctor may interpret as meaning their problem was solved.
It is essential for doctors to understand that the ME patient they see is an anomaly. It is like judging someone's daily activity by the day they ran a marathon.
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Doctors Refuse To Believe Severe Patients Because They Are Too Sick To Prove They Are Sick
The most severe patients are incapable of forcing doctors to recognize their illness. Their only hope is for doctors to simply believe them.
Severe chemical and sensory sensitivities can make it impossible for patients to leave the house even by ambulance without severe consequences. The inability to communicate through cognitive dysfunction makes it impossible to explain the situation in terms doctors understand.
Patients are labeled as noncompliant for missing appointments, refusing tests such as MRIs and spinal taps, and refusing to engage in physical therapy. Yet if patients consented to such interventions or forced themselves to attend appointments they would become so ill as to not be able to survive.
Patients justifiably put protecting their ability to toilet, eat and drink above the goal of making doctors recognize their suffering.
Because of the severe consequences patients face to try to "prove" their illness it is essential that doctors simply believe their patients. The best evidence of the disease's dysfunction is that it has turned these patients' lives upside down. No one chooses to live an empty life in one dark room.
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Effects of Stigma
Lack Of Research - Researchers are highly intelligent and often ambitious people. They have career aspirations and working on highly stigmatized illnesses negatively impacts their career. This in turn leads to less requests for research grants. Additionally, funding goes where the best researchers are working, so by scaring away researchers stigma also scares away funding.
Lack Of Disability Services / Caregiving - Without doctors who can accurately diagnose ME and who understand that patients cannot simply recover "with time" or with some therapy patients lack access to any official disability services or caregiving. They cannot prove to the government or insurance that they are disabled and thus have no resources for dealing with very real problems.
Lack Of Proper Medical Treatment Especially Of Commorbidities - While there is currently no treatment for ME directly, many comorbidities such as POTS, MCAS, Fibromyalgia, Sleep Dysfunction and autoimmune disease can be treated effectively greatly improving quality of life. But when doctors see ME/CFS patients as liars and hypochondriacs they are unlikely to provide treatment or support for their commorbidities. This means many patients either have to hide their ME/CFS from doctors to receive treatment for comorbid conditions or simply receive no treatment for very manageable medical conditions.
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Physician Bias Summarized
Physicians are deeply biased against patients with ME far more than other chronic illnesses both physical and mental.
Physician bias comes from poor initial education on ME/CFS followed by a disconnect between what patients say about the disease and what the physicians observe in clinical practice. This is reinforced by the lack of biomarkers for ME on blood tests or scans.
When patients are most affected by ME either through a crash or through severe ME they are cut off from the health system leading to a lack of healthcare knowledge about these states.
The physician bias against ME has in turn contributed to loss of funding which cyclically leads to further physician bias against the disease.
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Patients with Myalgic Encephalomyelitis aka ME / CFS have lower quality of life than chronic depression, COPH, schizophrenia, renal failure, rheumatoid arthritis, multiple sclerosis, lung cancer, stroke, heart failure and 20 total studied diseases. (Hvidberg et all 2015)
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70% of people with ME are unable to work and it has a 36-51 billion dollar per year economic burden in the US alone (Open Medicine Foundation 2024)
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Why then is such a debilitating and prominent disease not taken seriously by the medical profession?
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Unfortunately, with only ⅓ of medical schools teaching about ME/CFS. (T Peterson et all 2013) Most doctors only learn about the condition when they encounter it.
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Because patients with Severe ME or who are experiencing Post Exertional Neuroimmune Exhaustion PENE (aka Post Exertional Malaise PEM or a crash) are too light and noise sensitive and bedbound or housebound to go to a doctor, most medical Professionals never see the reality of this disease or the depths of suffering it can cause.
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Propped up by adrenaline on their one good day, patients come into hospitals and clinics in a desperate bid to get help for debilitating symptoms and the disconnect between how they present and the depths of illness they describe leave doctors perplexed. They understandably question
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•Why have I never heard of this disease?
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(Because it is rarely taught in med School and is stigmatized so patients avoid bringing it up if possible)
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•If the patient was so ill why didn't they go to the emergency room?
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(They couldn't stand the transport, light, and noise. There is no treatment.)
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•How can this patient be so sick yet look okay right now?
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(Adrenaline and only taking appointments on their best day.)
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•How could such a severe illness not show up on any blood tests?
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(No research funding was allocated to it. It affects intracellular biology. It often only is detectable during a crash.)
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In short: patients with ME are simply too sick for doctors to believe. This is why ME Advocacy is crucial. To shed light on what is never seen outside our bedrooms.
