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

Yep

I reckon as well that whatever you name it as or they’d be willing to acknowledge

I’d guess if put them all in a situation where they had to stand up still and couldn’t instinctively do things like moving feet, lean or perch etc then they’d all feel pretty unwell by twenty mins in or have had to ask to sit down

 

Didn't say "they don't have other medical conditions", but "no other conditions that could adequately explain their entire cluster of symptoms" - i.e. a completely undetected misdiagnosis at at least the 6 month mark.

The question predicate includes "recent diagnosis via CCC". If they're adults and have been recently diagnosed according to the CCC then they've been ill for at least 6 months and have been diagnosed by a clinician that uses the CCC (and they're relatively few) and they've got PEM. I think I'd still bet that in that circumstance that another condition will be unlikely to be found to account for all of their symptoms >= 6 months in.

 

OOh that people selling 'misperceptions or misunderstanding of pains' BS to everyone in the profession is pure evil and has so much to answer for.

It utterly should be something that is criminal or properly has a propaganda hate term given it isn't even veiled and the impact is catastrophic - I just wish that they had to live by their own edicts, but they don't. If they had some whatever then they would find some 'colleague' who investigated them medically so they'd know if they had any of these conditions, yet they wrote manifestos condemning those whose face doesn't fit to living a non-life and almost certainly dying early because of their 'don''t touch' warning.

So much for a health service that is for everyone. Not due to them. For those they target not even if they pay are they to have access.

 

Most of them think pacing will lead to allowing them to increase activity

 

It's an interesting one to bring up really, because as things move on for ME/CFS to focus on PEM and you think about the common other diagnoses the same person might have been given when they just see it as a lump-bucket FM/CFS/FND and the fact that people really could be quite likely to these days have both eg ME/CFS and something which is more pain related (whether it be FM or something else) which causes 'fatigue' but ME/CFS is a specific pattern of PEM that these others wouldn't have....

is there something about the criteria that need to be focused-up around that PEM description being better and more important

and less focus on whether people might also have other conditions that might also be connected with 'tiredness', given it's pretty common people might have comorbidities (as some other diseases often do come with comorbidities)?

 

I think first came the (wrong) assumption in their head that 'it isn't very bad/important' and you see the lack of seriousness most treat us with (vs anything else) - and there is a difference between fake sympathy/pity and seriousness.

Then comes their post-hoc justification (because it's nothing much, and will if you just lead a not too hectic life get better)

It's a whole minimisation thing to an extreme and those who live in it ... it's hard to explain how quickly you watch people just allow themselves to assume that, and then how it never gets let go of (because it isn't in their interests as long as they want to keep putting themselves first)

Most of my friends think I should feel sorry for them because I don't know how hard it is to have kids - like my illness that has taken everything from me is a tiny % of the tiredness of having kids. The so and sos know that all opportunities were taken away from me by this for that so that they can say that to me in that way shows how beyond callous and self-obsessed they are. SO many people are vile, lazy and self-indulgent I've sadly learned.

 

None of them will be doing less than they're capable of.

 

and hilariously most of them whilst ill with have been doing things for others that said others were perfectly capable of doing, but were just taking liberties - because many norms it seems to just do less or get someone else to do things 'for the sake of it'.

It's only 'can't' when it becomes 'really can't' for us, in a way that I've realised there is a majority of the population who will never fill their capacity perhaps don't have that same meaning for. And definitely wouldn't when ill (would absolutely take to their bed for 3 days with a cold types)

 

Some difficulties around digestion or eating that they didn't used to have.

It may be quite vague (e.g. just feeling more crap than usual after a meal), or specific (e.g. a food intolerance that causes IBS).

 

I've never experienced pain in 32yrs of having M.E. I didn't have sleep disturbances or PEM for the first 11 yrs of post-infectious sudden viral M.E onset. Sleep disturbance has never been an issue for me.

I was dx by an M.E doctor in 1992 who co-authored a draft definition (CCC). I was diagnosed with 'atypical' M.E. and told I would most likely recover within a few years. I relapsed 3 weeks after returning to work.

 

Most will report particular difficulty sleeping in PEM.

A smaller proportion will have a shifted sleep schedule (whether or not they're pacing well), that they find difficult to readjust. It could be fully reversed day/night, a switch to sleeping early hours to late morning, or they may need an additional sleep during the daytime.

 

Behaviourally, they will all engage in sacrifice and some will engage in time theft.

By sacrifice, I mean giving up some things (including important ones like hygiene and good diet) in order to enable others, especially work, study, and childcare.

By time theft, I mean telling others that they're doing something when they're actually resting because they're exhausted. It's common in undiagnosed and recently diagnosed people, and may continue in some who aren't supported or believed, or who feel they have no alternative but to try and continue working.


The behaviours probably need renaming!—but they're helpful for diagnosis, and they should be made explicit and assessed during clinical trials, especially as participants may engage in sacrifice without even being conscious of it. I've never seen any serious attempt to monitor it.

 

So much info about pacing is minimising the importance of it , there’s always a bit about how it “helps you do more” or some success where someone can have a day out walking or something.
None of it helps you manage your realistic factual responsibilities and ADLs
I’d honestly like to see a terrifying shock campaign about pacing, if we had that I might have taken time out in the beginning.

 

Atleast 10% will have been diagnosed with some variation of a “functional disorder” or “somatic disorder”, even though they have an ME diagnosis explaining their symptoms. A large subset thereof (atleast in the countries I’m familiar with) will have been diagnosed with a “functional neurological disorder” by a neurologist, who then dismissed their ME diagnosis.

 

That is fascinating and makes you realise how far backwards things have gone over the decades

To have been so accurate all the way back then, and from what I've realised of how precise their mapping of what they saw I wonder whether they suspected any reason for these atypical vs typical (which might be a clue to us all of what might be going on)

 

spot on. ALthough I'd be careful with the time theft one. I can see the behaviourists - who spread rumours about all sorts of people (who may or may not have the codnitions they assert, and for which that idea isn't likely to be accurate for most anyway just their making it up) that 'they become deceitful / lie etc' .. along the lines of the addict idea

whilst it is snappy, and we might know what we mean my experience is a lot of laypersons are all too happy to transfer a sympathetic description (that's how exhausted they are and how unforgiving the world is) happily into something that gets twisted as being some sort of personality trait

 

Absolutely, that's why it needs renaming and possibly reframing. But it's a thing, and acknowledgement of it would be useful—albeit perhaps only in peer support and genuinely sympathetic settings where recently diagnosed people receive help with ME management. I remember how relieved I was to learn that it wasn't only me, even though I rarely resorted to it. I realised I still felt guilt about what were actually small but crucial acts of self-preservation.

ETA: researchers should know about it too.

It's not as important as sacrifice, which is obviously one of the key planks of pacing for everyone who lacks the capacity to cover all of the daily living essentials. That's why it has to be recognised explicitly in trials; we often do it without even thinking about it. I think it might be a good word to employ, because it's accurate as well as quite empowering.