Create accountLogin

Recent searches

No recent searches

Search options

Not available on disabled.social.
disabled.social is one of the many independent Mastodon servers you can use to participate in the fediverse.
A place for people who are chronically ill, mentally ill, disabled, and friends/families/allies to come together, meet, share knowledge and random banter, and just about anything else.

Administered by:

Server stats:

227
active users

disabled.social: AboutPrivacy policy

Mastodon: AboutGet the appKeyboard shortcutsView source codev4.3.6

Tom Kindlon

🧵
Unusual but sympathetic paper:

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

mdpi.com/1660-4601/22/2/275

@mecfs
@longcovid

1/

Abstract People with Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other complex chronic disorders consistently report having difficulty obtaining effective and compassionate medical care and being disbelieved, judged, gaslighted, and even dismissed by healthcare professionals. We believe that these adversarial interactions and language are more likely to arise when healthcare professionals are confronting complex chronic illnesses without proper training, diagnostic biomarkers, or FDA-approved therapies. These problematic conversations between practitioners and patients often involve specific words and phrases—termed the “never-words”—can leave patients in significant emotional distress and negatively impact the clinician–patient relationship and recovery. Seeking to prevent these destructive interactions, we review key literature on best practices for difficult clinical conversations and discuss the application of these practices for people with Long COVID, ME/CFS, dysautonomia, and other complex chronic disorders. We provide recommendations for alternative, preferred phrasing to the never-words, which can enhance therapeutic relationship and chronic illness patient care via compassionate, encouraging, and non-judgmental language.
Feb 14, 2025, 06:12 PM·Public·Web
29boosts·34favorites
Public
Tom Kindlon

2/

Table 1. Never-words, their impact, and suggested alternatives

from

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

mdpi.com/1660-4601/22/2/275

@mecfs @longcovid @chronicillness
@spoonies








Table 1. Never-words, their impact, and suggested alternatives. Never-Words Explanation and Impact Alternative “You don’t look sick”. Many patients may appear healthy, but feel very sick with various symptoms, including fatigue and pain. Please refrain from commenting on their appearance. “You need to stay positive”. Saying this to patients with debilitating symptoms with limited treatment implies that the patient did not stay positive or that the patient’s attitude is to blame for feeling or staying sick. “I know it can feel discouraging to feel so sick, and especially for so long. We will work on this together”. “At least it’s not cancer”. Minimizing symptoms and disabilities is not well-received by patients who are suffering with non-terminal, but debilitating, and disabling conditions. Comparing diseases to make a patient feel better is a strategy that is best avoided, since it usually has the opposite impact.
Public
Tom Kindlon

3/

Table 1. Never-words, their impact, and suggested alternatives

from

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

mdpi.com/1660-4601/22/2/275

@mecfs @longcovid @chronicillness @spoonies

Table 1. Cont. Never-Words Explanation and Impact Alternative “Learn to live with this”. While this may be practical advice, many patients have already adjusted to living with their illness, but they want to live better and be more functional. “I know this illness can really disrupt your life. What did you do in order to adjust to this?” “Good news: Your tests are all normal”. This is good news for medical professionals, but patients may not care about the numbers or test results if they feel sick. This may also imply to patients that because their tests are normal, they have no reason to feel sick. The tests we have run so far are not showing any abnormalities, and the good news is that we have excluded certain conditions based on the results of these tests. “Many people have it worse”. Deflecting the patient’s suffering can be perceived as gaslighting by the sufferer. Please refrain from comparing patient’s diseases and experiences. “Have you tried___(lifestyle measures: yoga, going for a walk, diet, etc.?)” Many patients have already tried various lifestyle measures without benefits and are seeking further treatment from healthcare professionals, not recommendations of the same lifestyle measures. What are the things you have tried that have or have not helped you?
Public
Tom Kindlon

4/

Table 1. Never-words, their impact, and suggested alternatives

from

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

mdpi.com/1660-4601/22/2/275


@mecfs @longcovid @chronicillness @spoonies

Table 1. Cont. Never-Words Explanation and Impact Alternative “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.)” While a healthy lifestyle is important, the patient did not choose to stop it: the lifestyle changed as a result of the illness. Additionally, while lifestyle measures are important, they are unlikely to cure or effectively treat the underlying medical condition. “When you feel better, we will work together toward a common goal of improved quality of life and a healthier lifestyle”. “You look too___(appearances: good, young, skinny, pretty)__to be sick”. Comments on appearances are inappropriate because patients with chronic illness may not look sick like patients with acute illness. Many actually hide their ill-appearing looks, especially when seeing a healthcare professional. Please refrain from commenting on patient’s appearance. “We don’t have any treatment for your illness”. While this may be true for some illnesses, given no FDA-approved therapies, symptomatic treatment is available, and the patient should not be made to feel like they are being abandoned by the medical team. “We will talk about the available treatments we have that can make you feel better”.
Public
Tom Kindlon

5/

Table 1. Never-words, their impact, and suggested alternatives

from

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

mdpi.com/1660-4601/22/2/275











@mecfs @longcovid @chronicillness @spoonies

Table 1. Cont. Never-Words Explanation and Impact Alternative “Don’t confuse your Google search with my medical degree”. This statement has become popular among healthcare professionals, given various online information platforms and social media groups that patients use to obtain medical information. However, we find that many patients with complex chronic illnesses had to become educated in their disorder out of necessity, given limited help from medical professionals. “I am glad you’re reading about your illness and educating yourself on possible tests and treatments. Thank you for bringing this information to me. I will look through it and let you know my thoughts”.
Public
Tom Kindlon

6/
Extract from introduction to:
"Language Matters: What Not to Say to Patients with Long COVID, ME/CFS, and Other Complex Chronic Disorders"

mdpi.com/1660-4601/22/2/275

@mecfs @longcovid @chronicillness @spoonies

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].
Public
Tom Kindlon

7/

“Both Long COVID and ME/CFS are complex, with Long COVID being a relatively new diagnostic entity and ME/CFS, despite its longer history, still not taught in medical training, making both disorders vulnerable to stigmatization and trivialization [2,3,4].”


@mecfs @longcovid

Public
Tom Kindlon

8/

“Both disorders have been characterized as complex, multisystemic, and extensively psychologized, with patients encountering substandard medical care, disbelief, and stigma [3].”


@mecfs @longcovid

Public
Tom Kindlon

9/
“We believe that these adversarial relationships and language are more likely to arise when healthcare professionals are confronting complex
chronic illnesses without proper training, diagnostic biomarkers, or FDA-approved therapies.”


@mecfs @longcovid @chronicillness

Public
Tom Kindlon

10/
“The problematic conversations that transpire between clinicians and patients often involve specific words and phrases—termed the “never-words [6]”—that can leave patients feeling upset, angry, fearful, confused, and demoralized”


@mecfs @longcovid @chronicillness

Public
Tom Kindlon

11/

“Situations where patients are blamed for their own illness...create significant distress and distrust for patients and undermine therapeutic relationships, disease management, and chances for improvement or recovery."


@mecfs @longcovid @chronicillness @spoonies

Public
Tom Kindlon

12/
From “Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders”


@mecfs @longcovid @chronicillness @spoonies

Finally, even when clinicians and patients are in agreement about a chronic complex condition, because of the complexity and chronicity of these illnesses, it is easy for healthcare professionals to feel inadequate and ineffective in their professional capacity due to a lack of FDA-approved therapies for patients with Long COVID, ME/CFS, and other complex chronic disorders. These feelings can result in clinicians offering pat phrases or simply telling the patient their conditions are not treatable. Those addressing these communication barriers also have identified that humility, that is, specifically acknowledging what you do not know, builds trust [4,28], and recent research on science communication confirms this, as well [29].
Public
Tom Kindlon

13/

Concluding two paragraphs from “Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders”


@mecfs @longcovid

Screenshot of last two paragraphs
Public
ContraindiKate

@tomkindlon Thanks Tom, I've dropped link this into several family group chats :) Really useful to have it put together like this.

Quiet public
Onceoday 🇺🇸🩺🕊🏕

@tomkindlon @mecfs @longcovid

Shared. One of my daughters (in her mid-30s) has POTS, which we believe was caused by the first wave of COVID-19.

Public
Carrie Shanafelt

@tomkindlon @mecfs @longcovid Thank you for sharing this. In 2021, I sought treatment for long COVID, which had caused me to gain 50 lbs due to my loss of energy and lung function, and was told I was just fat, and there was nothing the long COVID clinic could do other than refer me to the weight loss clinic. The only notes in my file were about how fat I looked, nothing about my lungs or other health. I haven't seen a doctor since.

Explore
About