Dissecting the nature of post-exertional malaise, Hartle et al, 2021

I agree. PEM for me feels like I am severely hungover or poisoned.

That it isn't mentioned is a serious omission in most ME/CFS research in my opinion.

 

I am all too familiar with being very easily burnt as well. Never tan just burn.

Sunburn itself doesn't provoke the flu like symptoms, nausea and so on but, for me, sunstroke most definitely does.

 

Me too. When the subject of "tiredness" comes up I usual reply with I don't feel tired, I feel like I have the worst hangover imaginable, I feel like I've been poisoned.

 

I'm exactly the same in every respect. I am very prone to sunstroke (and very rarely go outside if it's 30+ degrees and sunny, although now I wear huge summer hats to protect my head from direct sunlight because that is what seems to be the main issue for me). When I was younger, I had no idea it was connected to sun exposure because it felt so very similar to having an immune reaction to some infection and there was also a considerable delay in it (I experienced symptoms many hours later or even the next day), that I didn't connect the dots, someone else had to explain it to me to understand.

 

It bothers me that the medical experts on "our side" don't understand so much about our illness. We will never get anywhere until that happens.

PEM as a worsening of our symptoms is not conveying the true nature of our disease and has become an obstacle rather than a help to moving forward till ME is given the same consideration as other diseases, particularly a doctor knowing what we are experiencing.

It is a soundbite description of some very complex processes.

When we use energy there are different outcomes after a certain limit that is variable as are the outcomes which is a very important point. It makes our life unpredictable and very difficult to explain.

It is important to understand we all have dysautonomia to some extent, severe or mild and again variable, which causes problems such as high heart rate, blood pressure problems, hypoglycaemia, loss of temperature control and so on with immediate consequences when a limit is crossed.

We also experience the same exhaustion after doing too much that happens in other illnesses which may be a central fatigue as seen in neurological diseases.

An obvious symptom is being very fatigued even with no exertion so that trying to do anythign is impossible.

Many of us get fatigability. For myself, I can be doing something then I stop completely unable to move for a few seconds up to hours.

Then there is the fatigue experienced in other disabling diseases such as MS, RA, cerebral palsy simply because disabled bodies actually need more energy than healthy bodies to do simple tasks.

More specific to ME, overexertion causes immune symptoms that are not usual with doing too much. These may be the symptoms of our illness that gets worse with exertion. They can start to appear up to 3 days after we have overdone things.

Cognitive activity can cause physical symptoms and vice versa. It is unusual to fall over because you have been doing the accounts but it is a very ME thing.

Then there are the thing that is so unique to ME it keeps getting missed out. There can be an extended, up to 3 day delay in experiencing symptoms even when we did not realise that we had overdone things. It is only when we collapse that we work back and see what caused it.

There is no way a simple acronym can cover everything and all the questionnaires have been inadequate.

edit to say - I think it would be useful if the scientific minds on S4ME to try to make a document which lays out what happens to us with exertion to help anyone who really want to understand ME

 

is there any mention of repeated pem episodes leading to a significant and prolonged worsening of symptoms as well as reduced capacity to cope with just everyday necessities of self care . i have never recovered from any of the major crashes i have had in the last 30 years .

 

I haven't read the paper but given the level of 'understanding' shown in the questions I would suspect not.

I mean a fixed time to 'recovered', really?

Do they mean recovered enough to get to the bathroom, recovered enough to make a drink, recovered enough to make a sandwich, or recovered enough to hoover more than 1 room at a time, or even recovered enough to get a bath, etc?

Or, even worse, do they mean recovered recovered which would indicate a significant amount of stupid exists.

So, no, I don't think it likely they will have grasped such 'complicated' concepts as trying to operate with something 'damaged' causing more 'damage' than the same task done without something already 'damaged'.

Most 3 year olds can, but scientists....apparently not.

 

I have this most mornings when I wake up; not just normal 'bleary eyed, not quite awake' feeling but like I've had a night on the tiles. My legs also take a while to start working and balance is all over the place. This seems to be regardless of what kind of a night's sleep I've had.

It tends to dissipate over the next few hours, sometimes paracetamol can help particularly if there is temperature disregulation. However, if it doesn't begin to improve but gets worse then I know I'm heading into PEM territory.

 

Yep, me too. I can feel like this even after a nap during the day & is one of the reasons I hate taking naps because I know how I'll feel when I wake.

Then again, if I don't take the nap it's likely I'll end up feeling like that anyway or wired but tired which means I'll struggle to sleep and that will amplify that toxic feeling the following day.

 

All of the above

I despair. Sorry but my patience is thin tonight... To have a single option for Q4 response is pathetic, as is thinking that a single option for Q2 is suitable... depends what you mean by PEM. They dont understand it, and they dont even bother to ask, oh i dont know, a few patients, how to design the sodding questions they never will understand it.

They worked out they need to understand it, which is good but this is such a typical case of 'i am a dr/scientist i know what this thing is that i want to study'.... Like men developing questionnaires for PMS, or women for erectile dysfunction - ask the people who experience it how to study it!

They just dont get it.

Q4 needs an 'all of the above depending on what i did, how much i over exerted and for how long'. If only it was as simple as they seem to think. Why dont they actually LISTEN

 

Agree with your comments re the questionnaire. Sad thing is it's one of the better ones out there, at least for guiding a clinical interview where a questionnaire is just the start of the process. My guess is that's how it started life, as a clinical tool.

And the researchers probably did talk to quite a few patients about it - and the patients said it's great because it was the closest they'd yet got to something even vaguely resembling what was happening to them, especially if they were relatively recent onset and/or had little understanding of science.

Thing is, it's not just a matter of listening to patients, you have to listen to the "right" kind of patient, and that's not the one who gratefully agrees with everything you say because you were the first medical person to take them seriously. I think us nitpicky science nerds constitute a minority of patients and thus are easily overlooked. A researcher has to realise that:

a) their current patient feedback is just a form of echo chamber,
b) they're missing suitably critical - but constructive - patient voices, and
c) that such voices exist and can be found on S4ME.​

It's not just the Bateman Horne Center doing this. On top of my head I can think of Workwell doing this, and Jason, and there are others I can't think of right now, too. I can see how they would think they're listening to patients, because they do, just not to the "right" ones, the ones who challenge their ideas.

 

I agree with most of what you said but

I disagree about the diaries.

Okay, I'll admit part of that is because I loathe the things and find it's the equivalent of having your disability well & truly rubbed in your face. For me a wholly negative experience and a massive extra cognitive burden. I do know and accept that some.people find them helpful.

Use of activity diaries has been going on since I was diagnosed and probably well before. They haven't really given us any staggering insights so far.

On top of the cognitive load, the negative effect they can have emotionally & psychologically, they also fail to take into account the very many things outside our control that affect PEM and PEM thresholds. That list would include - menstrual cycles, hormone, imbalance, menopause, humidity, air pressure (for some), air quality & pollens, ambient temperature & swings in temperature, and so on.

Honestly, having had some not bad expert input in the early days & keeping diaries etc, I can safely say that I have learned much more from conversation with other experienced patients (usually on here). Some of it I already know but haven't quite joined the dots and someone will comment and then the penny drops.

 

Again, it still stands. I don't believe this is suitable & filling in once a day wouldn't be at all accurate. Especially for the very people you would want to target - those who suffer particularly from cognitive problems.

I have learned by experience not to answer the phone for example. Too many times IM has come in just as I replaced the receiver and asked who was on the phone. I look at him blankly, "did it ring?". I might remember later, I might not and if I do I might remember a few days later but not recall what day I am recalling.

so you would either have to be filling it in often enough for it to be a burden or the information is completely unreliable.

That's exactly the problem. Unless you are one of the people who've lived with and adapted it's very hard to appreciate just how bad it can be, the people who have it may forget it but if you get them talking about it they'll trigger each other's memories.

 

I think it is possible but we just need to go about it differently.

The barriers to learning more, as I see it, especially in light of covid and the errors being made there -

1 - the patient - especially the experienced patient is a part of the team & not just something to be harvested for their data.

2 - just because some data has been gathered it, the researcher doesn't necessarily have the tools to interpret it correctly.

3 - bad or incorrectly interpreted data can be worse than no data at all because it gives a false sense of knowledge and expertise. That can easily lead to harm for patients.

4 - nothing is set in stone. Everything should be to the best of our knowledge, so far. Everything should be up for review and revision.

5 - the tools currently used for data gathering are limiting the way in which we gather and interpret data. They are in some ways a barrier.

I think initially just talking to patients with lived experience, not one to one but as a group like we do on here, to get a grasp of just how fundamentally something like cognitive PEM affects them.

It's important to talk to us as group - especially initially - because many of us fall into the habit of routines to work round our cognitive limitations. Then we can forget why we have such routines and the triggers and symptoms. So I might be asked by an assessor or researcher & completely forget I had a problem but hearing another patient describing a similar problem and I will remember. Or it may be that it's something that I can still say no, I haven't had that.

Maybe an iterative process? Instead of a single questionnaire, develop a series of staged questionnaires each starting and ending with a group discussion. The discussion and comments on the previous questionnaire informing the direction of the next. Each discussion stage open for at least days, preferably weeks or more. Very slow.

I don't really know enough about the formulation of such questionnaires and tools. Just the problems I have with the ones I have come across.

One of the biggest bugbears being when researchers out their own interpretation on what they think they're seeing, based on experience that may not translate and getting it very wrong. I tend to assume it's wilful but maybe some of it is genuine overconfidence in what they know?

 

Right from when I became ill at 14 one of my biggest obstacles to getting help has been the impossibility of explaining what is wrong with me. One aspect is the sheer complexity but that is partly answered by getting symptomatic help from painkillers of a wheelchair so I can go out though these are answering the more superficial problems.

After 53 years I still do not recognize when I am getting worse. A cousin and my Brother-in-Law both described having strokes. They knew something was wrong, crawling along on your stomach to get the dog his food for instance, but it did not seem to be very relevant. This echoes what happens to me when my ME gets bad probably for the same reason, the brain is under stress.

In a nutshell, part of PEM is not being able to form sentences about what it is. The same thing happens when we try to describe faces. We do not see in words, police officers have to be trained to do it, so we cannot use words to convey a description. Diaries are a way of trying to find the words but may not help.

If the biochemistry of what goes wrong in ME gets teased out we will get a way of talking about PEM but it is going to be difficult before that. It is easier to look at descriptions and see they are wrong than to say what it feels like.

For myself, I use the Workwell findings as a way of guiding my life. The idea of a broken aerobic system has given me a way to describe to others what I am experiencing even if it is not completely accurate or just a part of the whole problem.

 

You make some excellent points Ravn, all of which i agree with. I am just so frustrated in my personal life atm that i feel like flipping my lid, unfairly.

Also agree with what you've said @Trish & @Invisible Woman