Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Vocabulary 2022 Vasudevan et al

Research Objectives
To capture symptom experiences of persons living with ME/CFS to increase clinicians’ understanding of this complex illness.

Design
Case Series.

Setting
Multi-institutional collaboration.

Participants
A convenience sample of 12 persons with mild (n=16.7%), moderate (n=58.3%), and severe (n=25.0%) ME/CFS. Participant age: mean = 55.4 (SD = 9.7), range = 39-71. Ten participants identified as female, one as male, and one as transgender. Participants self-identified as Black or African American (n=16.7%), Asian (n=8.3%), White (n=75.0%), and Hispanic/Latinx (n=8.3%).

Interventions
None.

Main Outcome Measures
Not applicable.

Results
Language to describe symptoms, collected from semi-structured interviews, was categorized into domains recognized by the National Academy of Medicine [2]: post-exertional malaise (PEM), fatigue, cognitive impairment, unrefreshing sleep, pain, orthostatic intolerance/dysautonomia. Content analysis revealed a lexicon used by persons with ME/CFS to describe symptoms. Examples include “brain fog” (n=7/12) to depict cognitive impairment; “energy envelope” (n= 4/12) or “battery” (n=2/12) to explain the consequences of exceeding physical or mental activity thresholds causing PEM, the hallmark symptom of ME/CFS; “tired yet wired” (n=2/12) to describe unrefreshing sleep; and “dizzy” (n=6/12), “woozy” (n=1/12), and “swimmy” (n=1/12) to characterize orthostatic intolerance. Findings demonstrate similar use of terms and phrases to describe symptoms and experiences.

Conclusions
ME/CFS is a poorly understood, disabling illness. This study builds on prior work to define ME/CFS by analyzing lived experiences of those with this condition [3,4,5,6]. Awareness of language used by persons with ME/CFS to describe symptomatology may facilitate patient-clinician interactions and enable clinicians to better manage patient symptoms. ME/CFS is a diagnosis of exclusion and persons with ME/CFS often receive different diagnoses, perhaps due to complexity of symptoms, language used to describe them, or a general lack of understanding the illness. Delayed or misdiagnosis may result in triggering PEM and worsening symptoms. Further comprehension of language utilized by patients may help rehabilitation clinicians working with patients avoid PEM due to unnecessary overexertion. These findings may also be explored for persons with Long COVID due to common, overlapping symptoms.

paywalled
https://www.sciencedirect.com/science/article/abs/pii/S0003999322012254

 

I'm not convinced by these words. "Tired but wired" is just a small part of unrefreshing sleep and the "woozy"/"swimmy" bits sound too vague for OI -- they sound like they could equally be blood sugar issues to me.

 

I've used the term "woozy" as a vague catch-all for feeling not myself. And how I used "tired but wired" is more about PEM than sleep issues.

 

Very good these researchers are looking at communication issues in conveying ME symptoms.

Diving a bit deeper into this, there is the issue of sorting out, recognizing and naming symptoms. PwME can be so debilitated, they cannot tease out all the symptoms and describe them.

An important symptom may be missed, just because there are so many, and this is such a debilitating disease. For example, othostatic intolerance could be missed because weakness, fatigue, dizziness, and brain fog are also involved.

Another communication problem is definitions. Take "bedridden", or "housebound", and various degrees of these. How does a pwME explain to their doctor, they are mostly housebound or bedridden, when they are sitting in the doctor's consult room?

A symptom diary, and examples of dysfunction, including time spent bedridden and/or housebound may help.

Referring to biomedical case definitions may help with symptom recognition.

This all takes effort and energy, vital components ME steals.

The term "enormous" falls very short in describing the communication gap surrounding ME. Unfortunately, there is a great deal more work to do here.

ETA: changed "is" to "in".

 

paywalled
https://www.sciencedirect.com/science/article/abs/pii/S0003999322012254
FWIW - this abstract is all there is.

 

Indeed the vocab is necessary - but doing a Harry half-job focusing on what laypersons who've been fed misinformation for years will understand isn't the approach to getting it sorted. And that's what people have had to use unless the context is 'if we could change to things that make more accurate sense...'

It needs to be accurate to what is occuring to come up with words that 'do what they say on the tin' and nest like a Russian doll for each of the processes (like pre-PEM/over threshold, PEM, rolling PEM, detioration from that short, medium, long term all need to not have words from a different family)

So yes to the idea of a need - although they aren't the first to bring this up.

Definite no to the method and recruitment involved being one which will bear fruits. From my experience there might need to be something that is experiential of different patient types initially - but not like this. But then it needs those who are more 'expert' - I suspect both in amount of time you've had the condition/amount of experience as far as context and different severities etc, and just communication/vocab/mechanics of things specialisms.

With what almost certainly needs to be a panel you will be co-creating with (so they are as keen to get somewhere in collaboration rather than it being political and slow, but also can throw up ideas and good feedback) going backwards and forwards the whole time.

Starting with the old really isn't the way forward (although at some point the existence of these needs to be addressed).

Getting onboard the disparate groups of patients is going to be key because I think new words take a while to get used to using just by force of habit - but being able to finally drop the nonsensical term 'relapse' for something else would be a blessed relief and finally having phrases everyone uses for the accurate narrative and short-cuts to explain what the condition actually is (which isn't that different to when others have had a 'bad illness' they just need to imagine it stayed forever) will be made a lo easier by not pulling against each other with our own tribal terms.

And of course it is vital to show the BPS narrative, words and model up for the silliness it is. But we've had our legs taken out from underneath us without the diagrams and probably business/engineering type frank terms to describe the processes contained in it.

 

when Idiscovered the word upregulation it was a relief just to be able to describe the situation just to myself. Tired but wired infers it's just being awake when it's often body parts (!). Of course even if I can remember it as a word when in that state (normally really in one of the worse states when it happens), repetition and common usage would help, but also important is not feeling like if said to someone else they won't understand what is mean so more than likely will invent their own interpretation to meet their own assumptions or at best I'll have such a mountain to climb trying to communicate..

 

Oh and to emphasise the obvious - those with ME being able to work their knowledge up to get good terms for things is definitely not going to come from putting them in focus groups off the bat and expecting when exhausted and trying to listen and communicate in the middle of these they will be in a position to brainwave the most accurate terms, or think creatively.

People need probably several months to ponder on what terms they might suggest and 'put in the pot' with suggestions from others who are more expert working closely with them to come up with ideas (like designers might) that give options they could work off, but also that have the 'visual nesting' of how it could all work together.

Hence the harry half-job - we deserve a lot more to describe what is apparently a difficult area (made worse by minsinformation to those we need to communicate with) than being rushed beyond our capabilities and someone using old terms as a starting point

 

Additionally, how much one "markets" their symptoms can have a large difference in how others perceive them. I only describe my symptoms in terms consistent with the truth I have a serious medical condition. For example:

• "I have brain fog" vs "I have cognitive trouble."
• "I'm too tired to do that" vs "I'm too sick" or even "Doing that would hurt me"
• "I feel tired all the time" vs "I feel like I'm terminally ill"
• "Fatigue" vs "PEM" or "Exhaustion and confusion"
• "I'm feeling sick" vs "I'm unable able to do my normal/desired daily activities"

When I set up my upcoming visit to Cleveland Clinic, I didn't even mention fatigue. I said the 3 symptoms that bothered me most were PEM, cognitive impairment, and unrefreshing sleep.