Assessing current PEM severity (whether one is in a crash)

In the News From Germany thread, I posted about how I emailed a researcher about an upcoming study on sleep in ME/CFS. Snippet from my email:

Snippet from Claudia Schilling's response:

Does any metric exist for assessing whether one is in a crash at the moment, and/or how bad the crash is? One possibility I came up with:

@Ravn suggested this:

 

FUNCAP might be a proxy here.

Although one problem is that people might not know that they are in PEM if it’s a long crash (and they are not veterans in this game). I certainly didn’t last fall, but it was very obvious when I finally got out of PEM after four months.

Rating based on you worst experience ever has its own issues. Consider what someone that was severe, but is mild now. Anything would be on the lower end of the scale, because a crash as severe is so much worse.

 

And PEM is a pretty vague concept! Sometimes when a crash lasts really long, and it turns into a permanent severity worsening, it’s hard to tell when the PEM stops and the new baseline starts.
Sometimes I feel like I’m still in PEM from those crashes years ago.

 

I dimly recall us discussing the suitability of FUNCAP for measuring PEM. IIRC the general feeling was it was not finegrained enough to capture PEM well (FUNCAP wasn't designed for assessing PEM)

 

Important point - probably another one worth discussing (along with getting more precise terms for crash, flare etc that is eg a bit of PEM or a crash for two days or two weeks or four months and so on).

 

I don't think it's feasible to develop a metric as such, because PEM's just worsened symptoms. You can give a rough assessment of them, though, and that might be enough.

Something like:

PEM means the worsened feeling of illness you get 24 to 48 hours after "doing too much". This could mean more activity or concentration than you can manage, or being exposed to more sound, light or stress than you can cope with. Some people call it a crash.

If you have PEM now, please rate the symptoms on a scale of one to three. 1 is the mildest PEM you ever get, 2 is how it feels most of the time, and 3 means it's unusually bad.

• Are you having PEM symptoms today?
  Yes / No / Not sure
  If yes, please rate them: 1 2 3
  
  
• Did you have PEM yesterday?
  Yes / No / Not sure
  If yes, please rate them: 1 2 3
  
  
• Have you had PEM for longer than two days?
  Yes / No / Not sure
  
  
• Longer than a week?
  Yes / No / Not sure
  
  
• Longer than a month?
  Yes / No / Not sure

I'm not sure anything beyond that would be useful? Newly-triggered PEM night be different to a crash that lasts more than a week, but it's hard to imagine there's much difference over a longer period.

 

I'm not sure in my case if that would provide any meaningful information though because the length of my PEM depends on how much I went outside of my energy limit. I don't get 'mild' delayed PEM, my delayed PEM is always horrific.

 

It would tell them that (a) you had PEM and (b) it was triggered recently, by exceeding your limit. That's all that's needed.

A score of 2 or 3 establishes that symptoms are severe enough to record as definite PEM. A score of 1 might be PEM caused by a minor infringement, or it could be that the person just felt a bit worse than usual. Probably has to be recorded as unclear.

Some people don't have a 1-score for PEM, others do. If I've overdone it slightly I'll wake up with a sore throat, very swollen glands, and heavy limbs. I know it's PEM because there's a clear link to an event the day before, but the symptoms are mild and they'll often improve by the afternoon.

 

I'm not up to coralling my thoughts right now, & struggling to take in a lot of the suggestions, my brain is too blurry. but I like @Ravn's mention of activity.

This question brings to mind your recent poll @forestglip where I seem to remmebr others having same experience as me where worst sleep/most sleep probs come after overdoing it, after a huge uptick in activity.
Rather than during PEM itself.

So it seems like a question about activity/exertion levels might be as much or actually MORE important, than a Q about PEM.

I'm sorry i cant make any sense of how that would help in terms of the study, but wanted to flag it, because if my experience is indeed common - ie difficulty sleeping after overdoing it, rather than necessarily during a full blown PEM. The yet another study into sleep without taking that into consideration will likely be fruitless.

Well done for contacting the researcher!

 

I agree. I think what's important is seeing what changes from before to after exertion. Some people here have said that severe ME/CFS feels like PEM that never ended. It seems plausible to me that there is no difference in the biology of PEM vs more severe ME/CFS. One of the main questions should be, what is exertion doing to the body.

Unfortunately, incorporating exertion is a terrible study design for the health of study participants, so alternatives are needed. Chris Armstrong's ongoing study tracking activity and markers during regular life has potential to be a good alternative.

Or, just brainstorming, maybe the opposite could be done. Have people in the study do absolutely nothing for three days, and see if there is a trend in any markers as participants presumably improve from any PEM from regular life three days earlier. Would have to be people who are at least a little active.

 

Just to clarify, i was meaning asking about activity in regard to a question for the German researcher to ask, rather than in studies in general.

I wasnt thinking about incorporating it into a study design.

 

Oh no, I know. I went off on a tangent. You're probably right about asking about activity being important.

 

Yep I get sleep reversal and it screws up all timings for everything and takes 1-2weeks to cycle round , hence it being torture when idiots think triggering me again was the way to ‘set me right’ as punishment for ‘sleeping at the wrong time’. Which has led me here to utter disability none of them take responsibility for their part in causing

it’s more like giving someone a bout of raging glandular fever I’d mang weeks they’ve blown me for - not ‘symptoms rise a bit’ and let people choose gif themselves if they think it was just a few hours for you.

so one person blowing it for me would write off an entire weeks annual leave being restful and instead a struggle through sleep reversal and pain to not be triggered again whilst still look after myself to cycle round to normal ‘one day’ except you are now sleeping in the day making you more vulnerable to others, holidays were pointless because the travel blew my body being in any kind of rhythm fir longer than I ever stayed at the destination so it was just a desperate showing up and exposing myself in front of others by being trapped in accommodation with them etc agsin you are a sitting duck then to criticism and people thinking they’ll wake you up just for judgement sake. And that meaning instead of it ending that day that it’s triggered needing two or three more.

I also get issues like the lie flat thing - note that I like the wording on what causes it, however at my level it is just general‘hectic ness’ so movement around me and smells as well as being in an uncomfortable unsupported position for too long . We have to remember how laypersons use this against us, my life has been at the rough end only really coming across this type. I’m at the bottom end of severe and most I know even decades in can’t manage to actually give any leeway or Change their behaviour to as if I were mild. People are selfish in general and look to split hairs and find new ways to put themselves first and excuse it so pretend they aren’t grabby takers.

I’m afraid I find the ‘simplifying’ is slso minimising - we need to remember the cage issue and quantifying just how the sun total of these actually debilitated us otherwise we get people who talk about it just being a big of pain or dizziness not realising what they triggered is at best two weeks of throwing out even us scraping out getting to that essential gp appointment or completing an impossible but essential phone call. Normally just because the person having done it ‘was bored’ or ‘couldn’t be bothered’ as a sum total selfishness fir the taking from me by doing something that put me right over or disturbed my sleep whilst I was in PEM as if it was ‘a little thing’

it can be - as it was fir me for years and took me from moderate to nearly very severe - that people around you give no toss and you are continually disturbed whilst you are in PEM so are never ‘out’ of it. I think that’s the norm for most based on I can’t count on my hand the times I wasn’t in PEM not the other way around. And all I pray for is solid enough time when in PEM to sleep it off and get my feet under me - I think my body is blown beyond smithereens by now though too much has been done. And I just hide hoping to survive now knowing my body won’t even go back to the operating in PEM with the odd ‘pretend I’m normal time’ I used to have.

It just went for too many years basically being left being abused by selfish people all around until it nearly killed me. No one moved me even when I begged. No one stopped because’they have to live their lives’ (the post covid selfish peoples rebellion where they thought they did something special and now can grab things and be inconsiderate in ways that weren’t acceptable pre-covid because they pretend they were locked down ‘fir disabled people’ which they weren’t, they did it for themselves, we were already locked away)= can’t help taking liberties they would take with a well person who can stop them or be believed when they complain but they get away with when it’s an ill person they are visibly destroying because people are awful and don’t step in (and will just be happy it’s not them being picked on and getting all the noise snd crap).

Everyone who doesn’t step in then lies afterwards to take no responsibility for the harm they let happen to you and deterioration that means more needs - no one picks up the pieces for the consequences you then wear. So the worse you are the more hit about from things which aren’t small to you, because you have so little in your life, but can be belittled by others as ‘just this or that’ . And the less they will acknowledge it these days. Apparently ti these people whilst said debilitated I ‘don’t look ill’ which means deserve to be ignored in what I say. But I’ve realised those who ‘can’t see ill’ is a personality type only by meeting later in life the odd not selfish person . Most people aren’t looking at all anyway when they trot that one out . They have to be told it’s serious when it’s serious because they don’t come with a module of kindness or leeway for a few symptoms. And they don’t take responsibility for his if you antagonise someone when they have them then they are multiplying how bad and how long it lasts for.

I’ll be honest I worry we are ducking the ‘can’t’ in this write up so far that is so important - the genuine limitations that no one believes and is bad enough I imagine if you are mild , but terrifying dystopia to live in when more severe.

yes we are ill, but just saying that won’t stop other people from being inconsiderate and expecting us to just live with it not realising it is like we got this ill from having flu 4000times where we didn’t rest it off but weee made to do marathons whilst working instead. And the consequences of tgat on the body. The debility is a vicious downwards cycle because if we don’t get allowed to rest off one lot of PEM it just multiplies.

And we aren’t talking about how limited are lives can be in the first place. Limited to us, not what we ‘put out to others’ because that work productivity and turning up fir what turned out to not be that important vs my future now ‘events’ others couldn’t compromise on , but in joy, peace feeling freedom and safety ever. Huge things. Limitation levels most can’t imagine because we live on a different scale and framework vs other illnesses ‘having little adjustments’ to normal life. We had to rearrange completely how a week works to fit in obligations that neither fit our energy nor will people compromise. So you sacrifice nights of sleep and % of future heakth for them and wear that additional unwell ness for a very long time for having done it, giving up maybe 8weeks if doing anything ‘fir yourself’ whilst you recover.

I don’t have a routine because what people can if needed do in a day if pushed to it now is a years planned careful exertions for me. And that takes discipline and utter sacrifice every day around it to pull that off. I don’t get to also have days with routines because that’s what I sacrifice and compromise to ever get to a medical or dentist appointment and to do essential calls on which my survival depends. I save energy and take weeks of hit and recovery from those. I don’t get any normal weeks where I get routine and something just knocks me about a bit.