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

It’s me!

 

Each of the 100 people will have a different understanding of PEM. More than 80 will be in boom and bust.

 

Malaise is good in its precise definition, but as with everything else laypersons and BPS have warped that into something very minimised. Worse sounds like trying to use a pseudo french term for how norms feel with a hangover, not too distant from ennui.

SO I half agree and half disagree. The disagree part is the symptoms still aren't defined in the PESE. And there are some people who don't have symptoms all the time. But probably most importantly we need something that gets across the 'whole is greater than the sum of the parts' gist.

Don't know what it is though

 

I'm not sure. That would be an interesting one to see, probably, but to different degrees. I think a lot will be in 'rolling PEM' and I think boom and bust is probably something we need to break down to different things (like there is a difference between work week then weekends and evenings being ill vs 'making hay when the sun shines'.. then really paying for it), and at that point I'd say 80% at least would be in a combo of the two (rolling PEM and ups and downs)

Sadly I also feel that Crawley has poisoned that term to have insinuations - the sadly part being because I think newbies get it, the 'not sad' is because others read it as 'well it's your own blinking fault for overdoing it doing things you like' interpretation (OK sometimes it is, often its insisting on getting the end of cleaning out that cupboard too if that counts ). A lot of the time the only way we can get most things done that don't disappear off our lists is to do it in the 'boom time' knowing it will cause PEM, but a dentist appointment doesn't just go away etc.

 

this

 

@bobbler Until they figure it all out then that's what we're stuck with.

Malaise is a medical term that's used for cardiac patients- malaise cardiaque, includes nausea, weakness, out of breath, anxiety, indigestion et. I feel this describes PEM quite well?

 

Yeah, I think it just sounds discriminatory and patronising. You tend to know from the context whether it's being used in a neutral, clinical way, and to be fair it quite often is.

 

I agree, I don’t think it’s used “medically” and in general parlance Ithink it’s used interchangeably with fatigue

 

If you are asking if I get brain fog, yes, I still get it as a part of PEM. But the cognitive PEM has never been nearly as big a problem for me as the physical inability, maybe because I haven't had to use my mind too often. The brain fog is not as bad these days, but the physical struggle still stops me well before I do anything mental enough when I'm in PEM.

 

They mean different things to different people but I think diluting the criteria to allow for fatigue after exercise can be highly misleading. PEM to me is deterioration from exertion that is long lasting not just feeling a little puffed out after going for a walk.

 

A lot of definitions of malaise are “a feeling of unease” which can be read more than one way. Certainly if you feel ill, you are not at ease. But it can be read as “feeling uncomfortable” or “feeling something is wrong” which all feeds easily into BSP/its depression/all in the mind

 

It sure would be great if there was a better term, because it's a really important concept.

I don't think it's common in English, but in French it's often used to mean a really bad medical event, most often a cardiac event. It's definitely sometimes used to refer to a state of intense weakness, dizziness, a feeling of sickness of the type we mean, not some minor "get a juice box and you'll be fine" thing.

But it can't be used this way in a medical setting, it wouldn't have the same effect. Which is funny when you think about it.

Of all the basic things that need improvement in health care, basic vocabulary is really one of the big ones. It too much feels like the Star trek episode with a race that speaks in metaphors, but without the whole "being in a situation where we both need to try really hard to understand each other or we're all dead".

It never ceases to shock me how any of this is supposed to work out. It's all so self-defeating.

 

When it was used to describe my illness, I think it really was in that sense.

I first heard it in the mid-70s, when I'd seen the GP numerous times after developing ME. I saw 'general malaise' on my notes card and asked about it; I thought it was a diagnosis. He explained it was shorthand for someone who's unwell with various symptoms, and he'd used it because he didn't know what was causing them.

It was also put on a couple of sick notes when I was too ill to work but hadn't yet been diagnosed with ME. I got to know that particular GP quite well as I also dealt with him at work, and I don't think he ever had any doubts I was genuinely ill. He used it because he couldn't be more specific, like our family doctor 20 years earlier. Until I had a spectacular crash after using an asthma inhaler for a couple of weeks, that is, and I finally got a diagnosis.

 

That's interesting, but nope nothing like my PEM, which has been far more like you suddenly get eg glandular fever. In the earlier years the glands would swell. Agonising leg pains, like something has gone into overdrive there. Need to wee a lot. I still get rheumatic aches everywhere. It feels quite 'immune reaction-y' and closer at the start to when if you've ever seen it but a computer gets overheated and you watched it suddenly get noisy and it sounding like it's doing lots on the inside. Then I literally can't wake or move. And so on..

 

Over there/in other countries did the medical profession (I don't know if they still do) write patient notes and medications etc in latin? I assume here it is/was specifically so that patients couldn't see what they were saying.

Of course this is what you get told when like me you are being taught latin. But I guess the profession assumed 'the patients' generally wouldn't

I think if there has been a shift to English I'm only assuming it is due to the increase in work done by nurses/nurse practitioner roles etc and probably also immigration/internationalisation meaning even a doctor from Australia or USA wouldn't be able to read latin - rather than being done for patients etc. and the medical profession apparently opened up to recruit from schools that hadn't taught latin etc.

Anyway looking up the origins it seems to be unclear whether it is old french or latin, or sort of both. mal (bad) aise (ease) being the main thing coming up. It's all a bit academic anyway because what it is understood as or taken as now is what matters. And yes the issue is that anything we lobby to change just ends up being another opportunity for those holding the power to trojan horse it. SO doing a better job of getting the correct meaning embedded and PEM better understood with some snappy definitions is the more important bit (which I think was 'got' until the BPS slowly and deliberately targeted it over the last few years)

Do we know who came up with the term PEM out of curiosity?

 

Agree, that it is interesting to hear the history and how it might like many other things have been something serious back then, but if it is an issue now in some areas then it does need to be being dealt with

Absolutely agree that it has come from the BPS push to capture vocab, and they clearly saw this one as a sitting duck but also we know how important the concept of PEM is given it was eg the CPET 2 day findings that blew their calling everything fatigue and of the mind propaganda from making sense, and I knew they would try and target that getting muddied therefore.

I don't know what the solution is without soem sort of edict from somewhere with a bit of power behind it (Institute of medicine who did the report about how horrific the stigma is springs to mind) basically treating it like the dirty bigotry issue that it is and enforcing change.

Otherwise we've seen that those who want to be in the gang, or just not get left out of or bullied by the gang, copy the disses the gang put on any word. And even if a new one was enforced then without some sort of policing going on it would just be like when they use MUS or people get FND diagnoses where it might have been ME/CFS they will just childishly abandon the guidance of why it is so serious and move to a different term to sidestep and not be told etc.

That doesn't mean that I don't think we couldn't have a very good and well done campaign - and the window is right now - nailing down educating the whole public about PEM as a term, including HCPs (I don't think it works just doing the HCPs alone anymore, they need that social pressure to show them up). Particularly given the concept has a really good diagrammatical offering when you can refer to the 2 day CPET experiment. Far better than the BPS storytelling. And as the most important penny-drop term it is much needed.

 

and importantly these days is how it is interpreted as 'to be treated' by even nice GPs has been influenced by certain pushes based on propaganda propped up by non-science and inferences. I agree that I'm not sure they are taught to spend time differentiating someone looking 'done in' and are told just send off to CBT/IABT with the lie that they will differentiate (they aren't generally able to challenge diagnoses and certainly can't say 'it's x physical illness'), or even worse lie that giving them mental health 'treatment' they don't need and isn't for that condition isn't harmful and so no harm no foul.

Which of course becomes the circle of: because everyone they sent just got given said label regardless, that stat gets fed through as 'most people who you thought look tired it was caused by mental health/right to send them because in 95% of cases they got that label', and it gets sold and that stat once they have that. When really the issue is they aren't ever actually hitting a point where anyone is diagnosing one way or the other just a switch and bait at the crossover point where they get sent undiagnosed 'to be sorted into hats' and then picked up 'as if pre-sorted'.

EDIT: I think what I'm underlining is that in the last decade or more GPs have been actively de-skilled, or via perceived threats (duty of care if 'they are mentally ill and do something') and financial incentives (giving people a referral to IAPT was on the list of 10 things GP got paid for if they hit targets) to not differentiate between anything that involved 'seeming exhausted'.

I highly suspect prior to this it was barn door when someone had depression vs was really ill in other ways and GPs did use these terms with specificity. But they actually have computer pathways they have to click on which questions to ask (and which not to ask) and in someone's answer which bits to disregard of the list vs focus on (eg ahh they said the word exhausted) which is literally like reprogramming people in what to see and not see.

A decade of that and...

 

I hope you didn't interpret my description of PEM as minor. I was just describing how malaise is used in a medical setting Of course PEM is an experience that no one could understand unless they've experienced it themselves. I literally want to be 'put out' for 3 days b/c I don't want to endure it.

I prefer the term malaise over fatigue any day.

 

I'm not sure - the quote you've included is a direct answer to the question you asked me, which I'd read as 'did this sound familiar to you as a description of PEM?' and no it doesn't to me, it might to others and that's the fun of PEM but I underlined the sort of immune system reaction feeling of PEM vs the cardiac malaise description you provided.

I wasn't replying on any consideration of seriousness of malaise and haven't really brought that up myself in this thread?

I do however think that where we are currently it is another term that needs to be something we make sure is better nailed down to be accurate, because BPS definitely are wanting to undermine the term PEM and malaise is part of that and always has been ripe for ambiguity.