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BUFFALO, N.Y. – Disbelief. Judgment. Gaslighting. Dismissal. These are among the responses that patients with chronic, complex disorders, including long COVID, have, unfortunately, received from many health care providers.

These reactions do nothing to help patients and can even increase their suffering, according to a paper published in February by University at Buffalo researchers in the .

It’s not that clinicians want to dismiss their patients’ health issues, the paper states, but standard medical training does not teach much, if anything, about how to talk about, manage or treat chronic, complex disorders, such as long COVID, dysautonomia and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The paper provides concrete recommendations as to how physicians can more effectively communicate with, and treat, these patients.

‘Wastebasket diagnoses’

Lead author Svetlana Blitshteyn, MD, in the Department of Neurology in the Jacobs School of Medicine and Biomedical Sciences at UB, explains: “Many physicians were trained to accept concrete diagnoses, so disorders and syndromes that fall beyond straightforward organ or system damage and that are complex and multidisciplinary in nature, encompassing several systems, organs and pathophysiologic mechanisms, are going to be misunderstood or put aside in the category of ‘wastebasket diagnoses.’

“We are dealing with actual people who are suffering with these disorders,” she says, “so we must do better with education, training and thinking outside the conventional clinical care box if we are to help these patients, which is our job as physicians.”

Blitshteyn, who directs the Dysautonomia Clinic in Buffalo, sees many patients with autonomic disorders, where involuntary processes of the autonomic nervous system, such as digestion, heart rate, blood pressure and temperature regulation, malfunction.

Two of the most common chronic disorders are ME/CFS and long COVID. “These are undoubtedly real illnesses,” says Blitshteyn. “There is substantial scientific evidence that these complex disorders are biological in nature with abnormal pathophysiology involving immune dysregulation, autonomic dysfunction, mitochondrial disturbance, endothelial abnormalities and others.”

And, she says, medical history is filled with examples of disorders that were treated as psychological and psychosomatic until scientific research established a medical reason for heretofore mysterious symptoms.

“Peptic ulcers were believed to be caused by stress before H. pylori was discovered, and multiple sclerosis was considered to be a disorder of hysterical females,” Blitshteyn says. “I always explain that you can’t think or exercise your way out of long COVID, dysautonomia or ME/CFS any more or any less than you can if you have MS or rheumatoid arthritis.”

And while it is tempting to think of these disorders as novel and recent, Blitshteyn points out that none of these disorders are new. “The SARS-CoV-2 virus may be new, but post-acute infectious syndromes are well-known, especially after mononucleosis, influenza, Lyme disease and others,” she says.

The medical community’s inexperience with such disorders has negative, potentially long-lasting, adverse consequences for the patient, says co-author Nancy Smyth, PhD, professor and associate dean for faculty development in the UB School of Social Work.

“When one encounters people who are not hearing you, or are ignoring what you’re saying, or are telling you that what you are experiencing in your body is not real, these interactions have negative consequences,” she says. “Patients may end up feeling stressed, anxious, angry and hopeless after these interactions and then mistrust these health care professionals. For that reason, these kinds of interactions can be viewed as iatrogenic; that is, when a treatment causes unintended harm. In this case, the treatment is the interaction between the professional and the patient.”

In extreme circumstances, the patient may give up seeking health care altogether.

The authors stress that working with patients with these disorders is quite challenging, especially since managing disorders like these is not part of standard medical training or practice. They acknowledge that many clinicians are apprehensive about how to manage these disorders when they lack proper training and when there are no diagnostic biomarkers or FDA-approved therapies as there are for most other illnesses.

‘Never’ words

But better communication can significantly improve the clinician’s relationship with these patients so that they ultimately benefit. In addition to providing resources, such as continuing medical education courses and other curricula that highlight how to improve communication with these patients, the authors have compiled a list of “never words” that should simply never be used in patient interactions.

A few examples:

“At least it’s not cancer.”

“You feel sick because you are____(hormonal status: perimenopausal, menopausal, postmenopausal, postpartum, pregnant, menstruating, ovulating).”

“Learn to live with this.”

“Many people have it worse.”

“You feel sick because you are (anxious, stressed, depressed).”

“You need to____(instruction as cures: lose/gain weight, start exercising, get fresh air, get out of the house/bed, get a job, get a hobby, start dating. etc.).”

“You need to stop thinking about your symptoms so much.”

The list provides a starting point for clinicians so that they can begin to recognize statements that are not helpful and could be hurtful, and provides suggested alternatives to the “never words.”

Longer term, the nature of these complex, chronic disorders and how to communicate about them are skills that should be taught in medical school and graduate school for health care professionals in all specialties, says Blitshteyn. She notes that the Jacobs School students who shadow her in her medical practice and work with her on research projects are learning some of these skills.

“My hope is that when they move on in their medical training and start practicing, that they will be able to recognize, diagnose and treat these conditions and not dismiss or misdiagnose these patients with psychological problems,” she says.