[Thought experiment] In a random cohort of 100 ME/CFS patients (recent diagnosis via CCC), what can you know about them with 90%+ certainty?

@bobbler

You wrote "Malaise is just an old-timey insult frankly. The malaise or fatigue happens after the symptoms are exacerbated. Coz you feel rubbish so you do less. Not exactly quantum physics, is it?"

Generally speaking, malaise describes some symptoms of PEM which is better than referring to it as fatigue is what I meant.

Until they figure out the pathophysiology of PEM then it's ok with me when malaise is mentioned. The whole body/organ impairment-related symptoms caused by physical, cognitive, or emotional exertions is important because the energy production depletion is at the core, no?

I'm personally not a fan of terms such as neuroinflammation, immune dysfunction et because doctors are not going to take us more seriously either way. I also experienced immune-related symptoms during PEM but more so during the earlier years of M.E. My delayed PEM symptoms have intensified in the last 15 years and feel cardiovascular related. I avoid it by pacing. I feel there is a difference between immediate PEM and delayed PEM in my experience. My immediate PEM doesn't include cardio-like symptoms but feel more immunological and comes on quickly during allergy season.

 

I wrote that quote, not Bobbler. They may have quoted me when replying.
Malaise should never be used interchangeably with fatigue, however people do. Which circles back to my dislike of the word, it’s got negative connotations, it’s got mental ill health connotations, it’s got fatigue connotations. It’s not fit for purpose.

 

Nope, look at your quote and it wasn't me.

And then read what I did actually write in response to that and the discussion of it.

I'd be interested to see what you think?

I didn't point it out at first because I'm sure I've done it where I've mixed up a name or something, and I thought it would come out in the wash of the discussion

 

my apologies @bobbler

 

No worries at all!

 

When describing the ME symptom, I use "fatigue-like" instead of "fatigue", to clarify that it's not the same as other more common forms of fatigue. I do activities that generate normal physical fatigue, and that's distinctly different from ME's fatigue-like symptom.

When I think of the word "malaise", I think of the overall unwellness that I feel when a flu starts up. That's a complex constellation of hard to describe symptoms. In my ME journal, I often use the terms "bleh" or "lousy" to indicate that my overall symptoms are worse than baseline. I wish that there were better words for communicating those symptoms. Do any other languages offer better terms?

 

“Flu-like symptoms” does it for me.

And certainly, if I were to write using medical language like pharyngitis, lymphadenopathy, cephalagia etc then I’d be getting the eye roll from any Dr who read it!
(Sore throat, swollen glands, headache etc)

In English, the Latin/ French root of malaise (Malus, Mal-) is the same as malady and malingerer which doesn’t help.

 

I think malaise does it reasonably well, and post-exertional malaise does it better because it's more specific. I wouldn't have picked it myself, but as medical professionals use it to mean something that's difficult to describe concisely, and it can be modified (severe malaise, profound malaise), I use it.

One thing that does jar is when researchers pronounce PEM to rhyme with hem, making it sound as if it's a word. It's not, it's an abbreviation of three words that together add up to something huge.

 

So I've been saying it wrong all these years? Do you literally sound out post-exertional malaise every time you read PEM?

 

No, I say P-E-M, and most of the people I know do. That might be the reason I think it's the norm and 'pem' sounds really weird, though!

 

That’s how I say it in my head when I read it too pee eee emm

 

I thought the norm was P-E-M until I heard someone during the NIH research roadmap webinar say "pem", and I've grown to prefer it because it doesn't sound as unwieldy. Similarly, ME/CFS sounds very long and clunky to me, and ME feels so much more natural, especially if repeating the acronym multiple times in one paragraph/conversation.

 

eeewww me too! when people say pem as a word rather than using the 3 letters it gives me the creeps i have such an aversion to it i find it vaguely nauseating. I feel the same about people saying pip instead of PIP (the UK disability benefit).

Its just the sound of the words... i have absurd issues with the sounds of some words....
'Moist' makes me literally gag.

When i hear narrators on videos say "Post Exertional Malaise - P-E-M or pem", when they say pem i involuntarily cringe and shudder, i find it repulsive. Perhaps its because it sounds so cheery and light, nothing this catastrophic to my function or that causes such suffering can be called such an upbeat snappy thing. ugh. ditto with 'pip' instead of PIP

Its absurd i know and of course i dont own the word/acronym... people are free to call it whatever they like (lol as long as they dont call it 'tiredness'!!)

i've always had these weird reactions to the sound of certain words... is it just me? lol i know its stupid but there we are

 

I'm not from the U.K but I always felt that PIP sounded too much like PEP (liveliness and energy).

 

This is now getting really far off topic, sorry mods, but i wonder if one's accent affects it. For example for me to say the letters individually, basically sounds like 'pee,yee,em'. So said quickly it sounds like a slightly elongated version of PM (as in the time 2pm).

Therefore not an unwieldly acronym. I mean i'd never say N-I-C-E, i say nice, so its not that i usually say the letters. Its odd. I am, clearly, odd. But then you all knew that

 

Me too!

That's part of it, but it also feels exclusionary because most people won't know what it means—it even stumps me sometimes because it's so unusual to hear it. Saying P-E-M at least makes it clear it's an abbreviation, not a word.

 

PEM pronounced as an acronym (rather than the initialised P-E-M) sounds silly to my ear. When I first heard it I thought it must be a joke about how ME is trivialised.

 

@MelbME this is only a poster abstract, unreplicated, and I don't know what ME criteria was used, but allegedly 82% of patients had vasopressin levels below the level of detection, which is close to 90%.

If not already planned, maybe the saline infusion study could replicate this vasopressin finding? Perhaps alongside arginine, ADMA/SDMA plasma and urine levels??

As per Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients (2023, International Journal of Molecular Sciences) —

 

Yes this is very much in the space we are looking. Urine output, urea cycle (nitrogen metabolism), hormone production, blood flow, energy metabolism. That's where we think the answer lies and nearly all our projects are looking at these in different ways.

This little trial came out a while ago:
https://www.sciencedirect.com/science/article/pii/S0914508716301204

I should add that part of the saline trial we are doing a 24 hour urine collection following each infusion. We want to capture what the urine output looks like as well as it's speed. We don't do a typical 24 hour urine capture, we developed a new form the buckets each urine stop separately.