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

What differentiates malaise from fatigue to you?

 

Your question wasn't aimed at me (sorry!), but ... illness.

Sore throat and swollen neck glands, hypersensitive bladder, feeling 'wired', inability to sleep, everything out of kilter. For me at least, fatigue isn't much of an issue on the first day of PEM. It kicks in on Day 2 and is worst from Day 3.

I think it's quite common for more mildly affected people who're in the early stages of ME to think they keep getting viruses. That's how it feels, and on the first day of PEM I still can't distinguish between the two even after 48 years' experience.

 

I do think there could be a referral bias in van Campen/Visser. Patients go there precisely because they know that they will get a POTS diagnosis there, so you tend to attract POTS patients and from what I've heard the ME/CFS diagnosis then seems to essentially be handled via that POTS diagnosis.

 

I don't have POTS, never had POTS, I already had a ME/CFS diagnose. I asked my GP for a referral anyway. Those docs just know more about ME/CFS than the rest of the country's docs together.

 

Yes, but Visser and van den Campen have shown that many people with a ME/CFS diagnosis have orthostatic intolerance without heart rate or blood pressure abnormalities - i.e. neither POTS nor orthostatic hypotension. These findings have been replicated by the Bateman Horne Center.

Did you mean to say that people with ME/CFS who experience symptoms of orthostatic intolerance (but do not necessarily have POTS or OH) are more likely to ask for a referral to their clinic?

 

That would be me. And my only remaining symptom is PEM. But that's like saying my only remaining symptom is ME/CFS; once in PEM, the whole slew of symptoms -- fatigue, ache, head pressure, brain fog, unrefreshing sleep -- comes back. It's like overtraining syndrome that I used to suffer before that turned chronic.

I find it interesting that I get progressively weaker through a skiing season, unlike healthy people who get progressively stronger. I'd start out skiing all over the black slopes, and then, about a month into the season, I have to cut the time and intensity by half to avoid PEM. Even then, I still suffer from PEM and I have to hang up the skis eventually.

I'm completely PEM-free when I live on the road though. I can ski/backpack all over the country without PEM while living in my car. I've never heard of anything like it, so that's probably unique to me.

 

@poetinsf

Interesting. Do you experience both cognitive and physical PEM or just physical PEM?

 

This was exactly how I was. Always getting a “virus” until I was able to differentiate a real one from PEM. In rolling PEM - boom and bust cycle.

I say PEM but I mean PESE

I’d also like to discuss my history with a knowledgeable consultant (as opposed to Prof PD White) he did note some instances of narcolepsy when I was younger (not my wording) also a history of tonsillitis/sore throats etc, but never recommended to have my tonsils out, unlike many of my school friends.

 

Yeah I must say I didn't get into this, so can probably agree on the idea of it being crazy-making, and have even been a bit cynical about when people talk about diaries. Because after all that's energy. I remember @Peter Trewhitt describing his experiment and thinking that technique was one which at least had gain-loss worthiness when used to inform long term via going through short term 'work'.

The not doing it has partly been due to not ever being in a situation where my committments controlled by others have been under the threshold, so it's been a case of tenacity to up efficiency or outsource/alternatives (eg a cleaner, online shop) where there were options etc. And also general heuristics and habits that work (ways of doing things or timing of shower to let hair dry etc). I certainly eventually did however get a sense of how much time off I needed as radical rest before/after certain things eg if I was going to do something social or shop somewhere or turn up for someone's important whatever. I'm pretty sure that's been from bitter experience of beign stranded being spinning headed and sitting somewhere awkward working out how to get myself home, and the approx time to recover etc.

Then you reach the point where you've done all the options available and hilariously that's the point where you mention help to someone and the so and sos try and patronise you and waste your cognitive energy by wanting to 'help by suggesting the obvious - that you did 10yrs ago - instead of just doing that 30min thing you need them to do 'this way' and not ask questions why (energy, they don't have the capacity to understand the complexity of it all - and it would take you years to get them there)'

 

what that would actually be useful for depends on whether some gnatty people who are very experience at living with ME/CFS at different severities can train them up

and then thinking how on earth do you make the impossible fit eg when an appointment comes up that involves travel and you've not got things you can sacrifice that aren't essential (although I'm sure others have had to reduce brushing their teeth etc)

One day what would be fabulous about it is finally - and this so shouldn't be needed - if people believed what we needed, even if it does to them seem so extreme, without them stealing our energy telling us to 'explain ourselves' when they never intend to listen or be convinced anyway (abuse).

So using that to put together some simple computer game style things that require bosses and supporters and any other services that will come in contact with us to have the experiential situation we face would help massively. If you know that those people who are pains in the neck currently with their silly advice have had to go through an hrs 'so plan this' and they keep getting 'computer says no' because energy doesn't add up for the next fortnight, and can't claim the computer must be broken then. And the computer can emphasise that their solution to others of 'just put your noise cancelling headphones on then' doesn't seem fair for 24hrs vs them adapting their behaviour which is choice and want and unnecessary because would normally be done elsewhere anyway (its just the sick person doesn't shout at them scarily when you take the liberties with them).

And I bet your bottom dollar if that existed you'll have a lot of arrogant people thinking the pwme has come up with a silly estimate so they 'go onto it' because they think they can do it better and 'show us'. So it would make a lot of headway for us.

 

thanks for confirming. it is hard to remember back.

A bit of thinking back to when I wasn't quite as ill as I am (showering is now very much a small window every so often for me) and I think it was more about balance, dizziness - as well as it was common that I couldn't get to the end without having to lie on the bathroom floor in the middle due to fainting (luckily then I 'slow fainted' and could feel it coming on). Although it also was exhausting, almost always meant having to lie down at the end having 'just got through it in time' and probably needed a big oomph too (similarly to how I walk by using momentum to throw myself through things, which makes me look 'counter' to the whole fatigue thing where people expect slow walking)

I know because I used to have horrific tonsilitis as a child that it is the same (but worse) as being very ill with very bad tonsilitis (quincy level) and when you think you are well enough to shower and end up going white and helped back on bed/sofa and everyone is saying 'oh no that was too soon'. But just not having a choice eventually if you are ill and have a job so you find some magic strategies round how to do it despite.

But you are right there were probably times I was ill with colds or other things I just wouldn't remember as they were non-events. So it's fascinating that you mentioned that, really interesting to hear - particularly as I imagine they will be frames of reference HCPs might be coming from. I also remember coming home from sports training (even proper stuff like big sets of 200/300/400m with jog back recoveries of hill training) and the thought obviously going through my mind more of a tired/can I be doing with it.

Knowing you've got to shower before x it would be a case of hoping a window comes whether evening before (def take it if you are well enough because hair can dry itself) or running the risk of if the well point doesn't come in the days running up that a miracle will happen the day of. When it was back in the days of work and being more well that would involve a lot of alarms and ridiculously extra hours early to try everything to get to that point. It's so sad when you think of it because people would joke and be snide as if you were lazy but truth was that you'd be setting your alarm for 5am in said attempts.

I hadn't thought of asking others the details, but I do often think there are certain activities that probably offer the most insight even across severities.

 

I do wonder if mine weren’t whipped out (as was usual back then) because they weren’t “really” getting tonsillitis. As in, any sore throat used to be deemed tonsillitis, mine was clearly sore, bit red perhaps, have some banana antibiotic suspension anyway. Maybe it was fake ME non-swollen glands.

 

This is an important question to ask as it is exactly this we need to get others to understand.

Particularly right now, as BPS are currently trying to do exactly the change of subbing in post-exercise fatigue or even post-exertion fatigue for PEM

Although obviously the other thing with their thing, is they are talking about almost straight after too as 'post', rather than it being like a big illness suddenly hitting you 36hrs later.

 

Second this: "you always ended up with really bad tonisilitis (or something similar after tonsils were removed) every time you had a night out, or came back from a trip at school (particularly one that involved eg hiking in the rain)"

 

Yes! before even I knew what was going on (so was desperately having to trudge through and keep doing), there was a point where someone noted to me that when I walked I looked like I had bendy legs. Combo of the muscle pains in different places, and probably muscle issues (deffo not deconditioning caused by not doing, I think from my experience when you exercise when in ME/CFS and it's 'live' it might well actually 'waste' the muscles) and the new gait as you are trying to 'throw' your body through the walk vs having the energy to drive it and all the keep your balance when you are that unwell and so on.

And that is just one isolated example part.

Agree that just lowest common denominatoring this, and other things, into a 'fatigue' ends up (unless to put as a group category) sounding like the can't be bothered of the HCP just putting it down as 'that'll do' it is so distant.

 

My friend was tired after a night out, she asked me if I ever feel so tired my bones hurt. I had no idea non-ME people could get that tired!

I prefer PESE as it’s a precise title. Post-Exertion Symptom Exacerbation. Does what it says on the packet.

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?

 

This second paragraph is really important insight. I keep trying to note every so often that we need to be emphasising that the key characteristic of ME/CFS isn't just PEM but the deterioration that happens if we cumulatively push our limits - ie try and 'cheat PEM' or 'manage PEM' or just plan our lives to perform as we need even if we are resting enough to 'go out and do another round', whether to us that isn't easy either and we know (like when at work we are sticking a smile on our face but we know we have no life and are in PEM all these times we aren't in, and it's getting harder and worse) or think we are doing 'OK' (which is why I really worry about Gladwell when I read his approach as I can imagine him thinking he's cracked it and it being a formula to almost the worst type of deterioration because you build it up over so long then boom at 6-12months).

I guess theoretically even when severe there will, only every so often, be hours where if I'm not exerting at all and not sitting up too much and it's definitely been a good week etc leading up able to have a moment where I can 'feel OK' - although I might have aching hands, feet or somewhere else if I thought too hard I just don't feel ill for a moment. But that is only if I don't start moving and doing. And I definitely remember when less ill having times where again I felt OK - although would of course be followed by PEM and so on.

So on that pattern it flags an interesting question of I think that is as you say ME/CFS, just in its 'purest form'? Not that the feeling blinking awful basically all the time isn't also it too - real problem that we have to say that but we've come to learn how simplistic too many in the health profession want to be and 'simplifying' isn't some great skill in the way most who think it is tend to do it (just cut out the important stuff and focus on the easy bit doesn't mean you make headway, just miss the point) - you've emphasised how looking at the whole spectrum together, in all but the most defined of reasons, is important in understanding this 'thing' I think (If I'm thinking back to @rvallee 's question about 'what a model would need to explain' type theme, and people making sure they understand 'x phenomenon or description' would need to cover that 'spread') ?