Physician Acknowledgement Of ME Is Lifesaving : It is also the bare minimum.
What Does Physician Acceptance Of ME Mean?
Acceptance of ME means that doctors believe the WHO and International Consensus Criteria that define ME as a neuroimmunological disease whose defining feature is post-exertional neuroimmune exhaustion or post-exertional malaise.
They accept the NICE 2021, Mayo Clinic 2020 guidelines that say that ME has no known treatments or cures, is deeply disabling, not psychiatric in origin, and requires pacing or limiting daily activity as the only form of symptom management.
None of this is medically controversial anymore. It never should have been to begin with. There is no excuse for not reading the small number of defining documents for an illness affecting millions with a prevalence rate as high as 1%.
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Lifesaving Consequences Of Physician Acceptance
Acceptance of the biological reality of ME patients (and by extension long covid) is lifesaving in many ways but 5 key factors are:
Family & community support
Domestic abuse & neglect
Government support
Access to healthcare
Mental health
Further invisibility of the illness
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Family & Community Support
So many families unfortunately choose to believe doctors over their own loved ones. This is especially true if the family has any history of stigmatized illness like mental illness or addiction.
When families do not believe their loved ones they can be denied food or shelter for accepting this illness and not "trying to get better." Alternatively, they can be forced into dangerous programs designed for people with completely different illnesses.
Most importantly, support from family or friends is essential to patients' mental and physical well-being. Being believed and physically supported is of utter necessity to patients with 50% or less capacity to perform everyday tasks, especially for the 1 in 4 housebound or bedbound patients.
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Domestic Abuse & Neglect
Financial abuse is very often the precursor to emotional and physical abuse. When patients are dependent on their friends and family to survive this creates an immense power disparity which can be exploited by bad actors and patients are unable to defend themselves due to physical weakness, emotional isolation & gaslighting, and dependence on their abusers.
Emotion abuse can look like:
-Gaslighting patients into believing they are lazy and not really ill
-Blaming patients for their illness
-Blaming patients for being bad parents or partners due to being ill
-Forcing patients to push themselves past their limits to show they are "trying"
-Rewarding unhealthy push crash behavior and punishing healthy self-care and pacing
Neglect can look like:
-Refusing to acknowledge a patient's struggles as real
-Refusing to provide necessary help with food, healthcare, water and toileting/hygiene (potentially leaving patients in life-threatening or humiliating situations such as being forced to crawl for help or left collapsed and ignored on the floor)
Physical abuse can look like:
-Hitting, choking, or beating patients
-Raping patients -Intentionally provoking pain and symptoms
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Government Support
While there is a chance that families will believe their loved ones even despite an unsupportive medical team, the government requires diagnoses to access support. Without the support of medical practitioners access to disability care, housing and pensions can become impossible.
Misdiagnosis with alternative conditions can also be extremely harmful as the government may then require treatments like exercise and cognitive behavioral therapy for "false illness beliefs" or "pain sensitization" that can lead to permanent worsening of the condition in 80% of patients as shown in a 2019 survey commissioned by NICE.
Finally, even when doctors are willing to diagnose ME or ME/CFS they often refuse to acknowledge the fact that the disease is lifelong. While this may be done to avoid causing hopelessness in patients, in practice it cuts them off from disability benefits and rarely comes with any willingness to try experimental treatments to provide real hope.
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Access To Healthcare
ME patients have immunological, cardiological, gastrointestinal and endocrine changes all of which can require specialist medical care. However, travel to specialists is often not possible due to over 25% of patients being housebound and even more suffering severe consequences for travel.
Without the support of a GP who acknowledges the severity of post-exertional symptoms and relapses and thus advocates for home visits or telemedicine, many patients with ME simply go without care.
This is especially true of palliative medicine where if the symptom burden of seeking care is higher than the relief of anti-nausea and pain meds there is simply no point in attempting to access care. For this reason, as well as doctors' refusal to acknowledge ME as a chronic illness with extremely low quality of life, palliative care is dangerously under utilized by patients leading to heightened rates of depression and suicide.
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Mental Health
Besides major depressive disorder, people with ME suffer some of the highest rates of suicidal ideation and depression. In order to access mental health treatment that is helpful and not harmful it is essential that the treatment does not gaslight the patient into believing their illness is their fault or curable by positive thinking.
Many therapists look to a doctor's prognosis when treating patients with severe health conditions in order to judge whether the patient is having rational thoughts regarding their future life with chronic disease. When the doctors do not give an accurate prognosis, and that more accurate prognosis is easily sourced, the disconnect between how the patient feels and what they know about their disease can be misread by a therapist as mental illness.
All this leads to patients receiving unhelpful gaslighting therapy, rather than receiving helpful forms of acceptance-based therapy as would be given to patient with MS, cancer, etc. This further worsens the already poor mental prognosis in patients with ME.
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Invisibility Of Unofficial Illness
Patients who are rejected by friends, family, medical providers, and government assistance as a result of their doctors not acknowledging the biological reality of ME are likely to themselves downplay the role of this illness in their lives.
They may learn that alternative diagnoses like chronic migraine, fibromyalgia, POTS, depression and so forth are better received by the public and thus not highlight or even disclose their ME/CFS (assuming they learn they have it at all). This despite the fact that ME is often far more disabling than any of the conditions they choose to highlight.
This combines to make ME further invisible and to hide the medical and societal neglect of patients with ME. This in turn minimizes the visibility of the problem in healthcare leading to less acknowledgement of ME starting the cycle all over again.
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Acknowledgement Is The Bare Minimum
Keep in mind all the consequences listed here come not from healthcare providers acting conservatively or refusing to try experimental or risky treatment but simply from providers refusing to diagnose the illness and provide the most basic of information.
There is so much more that doctors CAN do to help patients with ME. From actively advocating for them to providing palliative care to exploring experimental treatments. So to simply acknowledge their illness is truly the bare minimum. Yet it is a minimum that is often not met with devastating consequences.
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Physician aknowledgement of the millions Missing with Myalgic Encephalomyelitis aka ME/CFS and long Covid is lifesaving. It is also the bare minimum.
Myalgic Encephalomyelitis MECFS is a disease with no FDA approved treatments or cures. So why is physician aknowldgement so essential? The answer is in our social systems, both formal and informal.
Formal medical recognition grants access to palliative Care and Symptom Management including advising patients about Post Exertional Symptoms such as PEM (post exertional malaise) and PENE (post exertional neuroimmune exhaustion) and their management through pacing to avoid symptoms can all make a big different to patients healthcare.
Formal social recognition can allow for greater community access through access to mobility aids, community services like meals on wheels or home nursing, and social security benefits such as disability pensions and direct services.
Informal recognition is equally important. Families and partners are the greatest most common source of caregiving and support for those with invisibleIllness complex ChronicIllness and chronic
Fatigue areas official services are failing.
But when patients do not have the support of their doctors these relationships can easily turn to abuse and neglect. Doctors have immense power to legitimize or phychologize illness.
All of these essential services and relationships for a severely disabled spoonie with ME depend heavily on recognition by a medical professional.
Doctors have power, and with that power comes the decision to support their patients or to gaslight and abandon them.
The ME community begs that doctors Of Instagram and medical Professionals read the Mayo Clinic 2020 and NICE 2021 Guidelines, learn what you were not taught in school and support millions of people who need your help.
