Language Matters: What Not to Say to Patients with Long COVID, ME/CFS, and Other Complex Chronic Disorders, 2025, Nancy J. Smyth et al

That could well be. Even logging daily activities, which has a huge benefit/cost ratio for me, can be very costly for some patients. Measuring time spent lying down with a stopwatch? Forget about it. Each patient has to decide on each case based on his/her cost, I suppose. I certainly wouldn't go for a hail Mary, like antivirals for example. "Safe and cheap enough" is my motto, though I haven't always lived by it.

 

Yep. If I had to log every activity I probably wouldn’t have enough energy to do anything else.

At my worst, it would have been impossible without triggering massive PEM, (at that point what would have counted as an activity worth logging would be things like taking a sip of water and turning myself around because that was about the extent of what I could do without PEM).

 

Very important point. I stopped using Visible because two minutes of screen time was too much. That’s obviously not the case anymore, but I never resumed using it.

I would agree if ‘cheap’ includes the cost of searching for candidates, tracking the effects, and everything else that goes with experimenting on oneself.

 

1st paragraph of the introduction

Clinical care and communication surrounding complex chronic disorders, such as Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), dysautonomia, and other disorders involving chronic fatigue and chronic pain has been a challenging task, influenced by a lack of clinical training, controversy, internalized biases, and ableism. Although there is strong evidence of abnormal pathophysiology underlying these conditions [1], biopsychosocial explanation and psychogenic etiologies continue to influence how medical professionals relate to and communicate with patients affected by these disorders: paternalistic relationship and false attribution of physical disorders to disturbances of the mind and psyche are among some of the major barriers to effective therapeutic relationship and treatment of patients with these disorders [2,3].

 

@Dolphin this might just be me, but underlined text is really difficult to read. Would you be able to change it to something else?

 

OK, wasn’t sure it was “bold worthy” but have changed it to that.

 

Thank you!

 

5. Conclusions

Communicating with patients about complex, chronic, and disabling illnesses can be an uncomfortable, nuanced, or highly emotional interaction that few healthcare professionals have been taught to engage in throughout their medical training. Clinicians may be apprehensive while approaching the diagnostic and therapeutic management of these complex chronic illnesses without proper training, diagnostic biomarkers, or FDA-approved therapies. Patients are likely to enter these relationships having already encountered multiple obstacles to obtaining effective and compassionate medical care, including dismissal, denial, misdiagnosis with psychiatric disorders, personalized biases, and medical neglect [5]. In addition, patients with Long COVID, ME/CFS, and other chronic disorders have experienced significant losses because of these disorders, and these losses have a negative impact on them and on their families. For these reasons, relationship-building skills, such as asking questions about their experiences prior to seeking care with you and conveying empathy, as well as avoiding never-words, will all be important to developing a strong therapeutic relationship.

While effective healthcare professional-patient communication should follow well-established structures and processes for communicating about serious illness, it should also avoid never-words that have special meaning within this unique healthcare situation—these never-words may be detrimental to effective communication and serve as significant barriers to effective clinical care and therapeutic relationships.

 

Medscape What Not to Say to People With Complex Chronic Illness
Article by Miriam Tucker

quote:

Traditionally, complex disorders such as ME/CFS, fibromyalgia, and dysautonomia were not given the same consideration, medical training, or research funding as other chronic disorders. There was an erroneous assumption that these disorders, and now long COVID, are based in psychiatric or psychological etiologies unlike other chronic diseases such as diabetes or heart disease that are “legitimate.”

This dichotomy permeated our medical training where trainees were taught to not spend too much time on the latter category of patients and refer them for psychological care. This lack of training, coupled with insufficient research investment in these disorders, resulted in significant shortage of clinicians and scientists knowledgeable in these disorders. With this paper, we hope to highlight the wide gap in communication and attitudes among clinicians and other healthcare practitioners toward a patient population that has been largely neglected by the medical community, but that deserves equally effective and compassionate care as patients with diabetes or heart disease.

I think that given the prevalence of long COVID in the general population and among healthcare practitioners themselves, attitudes are changing for the better, and knowledge gaps and diagnostic delays in the care of patients with complex disorders are being reduced. Still, some clinicians continue to utilize old thinking and outdated narratives by attempting to psychologize these disorders.

 

I am not saying its not happening because I don't really have any data (which suggests they don't actually care) but the clinics are being shut down, patients are reporting its even worse and the diagnosis rate on NHS england's data before they stopped even tracking it showed declining diagnosis rates all the while the GP patient survey shows increasing uncertainity about whether people have Long Covid. I think their actions and the data show the situation around Long Covid recognition is getting worse not better. Shutting down all the measurements didn't happen because the problem went away!