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

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.

This 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.
LINK

 

I’m not able to copy it on my phone, but ‘Table 1’ is where the important bits are hidden. I don’t know if my GP would be receptive to this if it came from me, but he might be if it came from his mentor. Idk who that is, though..

 

Final statement in Table 1:

“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”.

 

Where I live, there has been near zero lectures on ME/CFS or Long COVID, so it’s not even an hour lecture, but more like some quick opinion forming through seeing headlines shared on social media. And still, professionals automatically assume they are more knowledgeable than you.

As if you have been completely disabled and bedridden by something but never bothered to look it up.

 

The only one I disagree with is “We don’t have any treatment for your illness”. I don’t know why it’s on this list. I wish I was told that early on instead of wasting my energy and money trying random stuff.

 

It does specify symptomatic treatments in the explanation, but that should probably also be included in the suggested answer.

 

I dunno. However accurate bits of this might be, will it help? Or even be read?

Quite a bit of it isn't useful information about how to talk to people about their symptoms or diagnosis, it's about how not to be a judgemental arse. It seems to assume the reader probably is.

Of course there are problems with doctors' communication, which why some actors do role-play work with them. It's not always about attitudes; lack of social skills comes into it, as does a lack of thought (sometimes due to time pressure) about how the information is going to land.

One actor friend told a group of doctors at the end of an exercise, "What you say next will be remembered by this person for the rest of their life. Recognise the moment, and think about how you'd like your message expressed to someone you love." To me, that sort of approach seems more useful and constructive.

 

I was told by my ME doctor that there are no new break throughs or treatments and I still spent $$ on treatments that didn't help.

The only improvements I received was from balancing out my deficiencies, ie iron, b12, fish oils and magnesium.

 

My GP told me that they haven't figured it out yet. I was good with that until she left the room and didn't help me with applying for my disability benefit.

 

The NHS in UK has a policy to promote healthy lifestyles at every opportunity, there is no way they will stop interfering in your diet, it’s literally their policy to do so. I think I’ve had “why don’t you lose weight…I know you’re tired but just eat microwave meals” twice this week in discussions about my bladder and my nose.

Have you tried microwave meals is the new have you tried yoga.

 

This misses the point a bit that it's not the words but the thinking behind the words that are problematic. This is basically what psychosomatic ideology has been doing for decades, tweaking around words and labels to achieve saying one thing that sounds entirely like another. They do this with intent to deceive, so it's not su much a double-edged sword as one where the handle is also a sharp blade.

Overall it still captures the problem rather well, but this is a bit like addressing systemic racism or sexism with a workshop telling people to avoid slapping women colleagues on the butt, and instead find different ways to be sexist that simply avoid using terms from a list of banned terms.

So it's a bit problematic in that the researchers get it, but frame it in a way that will not get across. It shouldn't be considered unrealistic to do better, to change the root cause problems that lead physicians to say hurtful things. Generally because they are aware that they are hurtful, which is a problem with training and culture, where they have to deal with the limits of their knowledge.

Still, there is a basis to "tone sets the the culture". By changing the tone, you can change the culture. As long as there aren't private contexts in which everyone understands that the public version is just a cheap "I'm sorry you got offended by how I said what I meant", when the problem is actually with what they meant, not the way they said it.

Because if we consider the changes caused by the psychosomatic models taking over in the late 80s-early 90s, the tone can absolutely be set and lead to changes in outcomes. If physicians are told to do or say one thing, they will comply. They don't question, most don't have the time anyway.

 

This is what I’m hoping for. IMO, if they can’t even talk ‘correctly’, there’s no hope for their actions. There’s always the risk of manipulation, but we get that already so it wouldn’t make much of a difference. This would at least have a chance at making an impact.

 

From ME Research UK:

Researchers have reviewed key literature on difficult clinical conversations, and have provided recommendations for alternative, preferred phrasing which they hope can improve chronic illness care through “compassionate, encouraging, and non-judgmental language”.

Read more:
https://www.meresearch.org.uk/langu...sionals-should-not-say-to-people-with-me-cfs/

 

My doctor told me that there was nothing he could do for me as soon as I mentioned PEM. I appreciated his candor. That was almost 20 years ago when I was getting knocked out periodically. I haven't spent a dime on office visits since then, other than for diagnosis purpose.

 

My doctor and the specialists seem to think that’s important to not have me lose hope. It’s always about what we can to do get me back to my life, they talk about everyone that have gotten better.

It almost makes me wish I was paralyzed instead. At least they would let me grieve and not talk about walking again.

 

Similar experience. i spent 6 months going to every specialist my doctor referred me to and trying everything they prescribed. it was brutal and way too much. Especially having to explain to every doctor and listen to their "opinions"; "me/CFS isn't a real diagnosis" "so basically your depressed?" "there's no way that's just chronic fatigue [queue a million extra referral]" "oh I've seen this before, you probably were traumatised in your childhood, you have FND"...

The physical toll of appointments everyweek + "therapy" + chatty homecare assistants is how I went from bedridden and wheelchair bound to what I called "Whitney Mode" ie. Extremely severe ME, for a while.

 

Offtopic side story: A couple of weeks ago I watched the documentary about Christopher Reeve. It dealt both with his film career and his accident and aftermath. And there was a part that struck me as really odd.

He of course tried to draw a lot of attention to paralysis and did a lot of activism, tried to push research in hope of a cure and so on. He especially pushed for stem cell therapy, it was what he really seemed to believe in. And according to the documentary he pissed off some other people living with paralysis (maybe even patient organizations, I can't remember the details now). I think their issue was the too much focus on and overly hopeful attitude for unproven cures and they themselves wanted more focus on making the life they have as a disabled person better/easier. (Again, my memory is a bit fuzzy now, but I think this was the issue mentioned.)

The problem was that in the documentary this was presented as if these paralyzed people didn't want to get better or cured. Which is of course pretty much nonsense probably and it reminded me of some aspects of ME/CFS advocacy and some of the issues around it (even though not exactly the same).

 

I agree with your analysis even though I have no idea who this guy is.

Accepting reality doesn’t mean that you don’t want to change it. It just lets you work from a position of clarity.