What high-quality resources should S4ME produce for PwME, clinicians, researchers etc.?

Excellent way of putting it.

I, too, use "difficulty processing sensory stimuli" rather than "sensory hypersensitivity" for all the reasons previously stated. I also often point out that dodgy governments--particularly my own--use sensory overload/deprivation and orthostatic stressors in "enhanced interrogations." Even very healthy twenty-year-old men will find being bombarded with very loud music and bright, flashing lights (as well as being chained to the floor in such a way that they cannot sit down) utterly intolerable after a certain amount of time. For pwME/CFS, the threshold at which that sensory stimuli becomes torture is much much lower. Your analogy @Subtropical Island of already having significant tissue damage before getting a paper cut works in much the same way.

I've found myself in the last few years increasingly uncomfortable with the causal insistence on exertion and crashing. It's always retrospective and, thus, prone to all sorts of biases. Most of the time when I crash, I'm going back and doing what @hibiscuswahine mentions above, "what did I do wrong?" And then coming up with "well, maybe that thing I did a couple of days ago?" Which I think we can all see why that's a problem scientifically.

Moreover, the worst crash I've ever had had no link to exertion. My best causal guess would be hormonal changes brought on by perimenopause but without the ability to measure anything, "whereof one cannot speak, thereof one must remain silent."

To be very clear: I am NOT saying exertion is irrelevant or unimportant. Like @Jonathan Edwards (if I've understood him correctly), I think that exertion is one of many potential triggers or "gear-shifts" precipitating a crash, perhaps increasing the perturbation of a complex cycle of signals and processes already at work under the hood that is completely random. Because exertion is a potential trigger--and because we have no good evidence that it helps--GET should be contraindicated. But like Jo, I don't think the insistence on centering exertion as the cause of a crash helps us and may well be distracting us.

[That last par hurt my brain. Must rest. Sorry if I can't respond further.]

 

Until more is understood about it I can't see the value in tinkering with the term PEM. As someone said back in this thread somewhere I think, it's a placeholder.
However! Personally, I can't even bring myself to use the word malaise. Its medical meaning, "a general feeling of discomfort, illness, or lack of well-being" hardly does justice to what I have experienced. I really does conjure up images of a Victorian swoon. I have no idea what could replace it but Post Exertional Deterioration comes to mind as something more relatable.

 

Apologies, just skimming, only have read the last two posts since I last checked. So maybe redundant.

Agree both that PEM probably works best as a placeholder (like the term ME/CFS) for now and that it needs to be described and investigated better.

What I think is an misconception is that pwME/CFS feel debilitating ill/ sick only after some trigger that could be understood as "leaving our comfort zone". That's at least how people often seem to understand when I try to explain my disabilities.

Maybe because "post-exertion" implies the idea that before the exertion that is seen as trigger people usually don't exert themselves? I think that's wrong. Even 'post over-exertion malaise' still doesn't conceive what happens I think.

I now find it difficult to remember how it was when I was still very mildly and mildly affected. I think the tricky thing was that I didn't feel/ recognize the activities/ stimuli were unusual exertion while engaging with them. Also I think I still experienced substantial periods of time (e.g. a complete day ) without having debilitating symptoms at all. That has been different for long while now.

I remember that in my mild phase looking for a GP I said something along the lines to one of the candidates:

As long as I'm at home I can cope with my symptoms, only when I leave the house it gets worse.

He concluded: "Ah, so you want me to treat your social phobia."

He got very impatient when I doubted that I could have social phobia, because I actually enjoyed being outside and meeting people.

(So enjoying something and getting worse from that to many people seem to contradict each other?)

 

Continued from above.

Now being moderately to severely affected I find it difficult to disentangle which symptoms are just due to a random fluctuation in my disproportional physical and cognitive fatigability and which are 'real' PEM, as I feel very sick almost all the time, but still exert myself most of the day too -- mostly with daily activities that I didn't experience as exertion before but now do, but also still a tiny bit with activities that I'm happy to not experience as an exertion while I'm engaging with them.

Edit: Also, I still can enjoy activities while they are amplifying brain fog, pain, dizziness etc. So even more confusing: Not only does my illness worsen after activities I enjoy but also while I'm being happy with what I'm doing -- at the same time, even though only for a very limited time before I need to rest;

Edit 2: And even resting now has a different meaning -- before ME it could just be needing to sit down or even taking a walk or chatting with friends in a nice atmosphere. With mild ME, it became meaning to lie down in a quiet surrounding /with earplugs. Now it sometimes still means the latter but often means staying lying in bed (from which I do many activities now) but taking a nap (most of the time I actually fall asleep for almost exactly 30 minutes)

I realize it may be helpful to give some examples -- sorry won't be able now as writing posts is a huge (voluntary) exertion. And just writing these two posts took a very disproportionate amount of time.

 

I have posted a new thread - or maybe just an essay - to try to answer.

 

Just throwing this out there as I had one of those inspiration moments.

And this suggestion is more long grass/term and inspired by if there was a website which the forum would then be embedded into

Would it be worth fishing around for good resources on what good design is/articles on some of the principles that people need to be aware of and thinking of when either designing an experiment or reading a research paper, perhaps by different areas/subjects (the journal issue in Health Pyschology that covered the Pace Trial being one example that could 'bridge' the more generic to the ME-specific for example).

What I had in mind when thinking about this was due to outside my window overhearing a conversation [someone else was having] with someone who used to be a science teacher

....and thinking back to those years where many people were dead set on being doctors/medical school, others studying science thinking that was their thing and many others had the basic subjects but no idea what that translated to in university or careers and were just starting to explore what different things were about (including law or philosophy which might also be subjects they don't do and are starting to do a bit of exploring to learn the principles of). And how at some point you start to read around the plain subjects

So age group 14+ (but in the classic way, pitching it at approx 17+ and people might read earlier). I'm not meaning it needs to be anything to do with careers but thinking about this might be the point where people have the most breadth still and haven't 'specialised' into eg physio or psychology or medical school and theoretically all these principles of good research should be consistent across all.

Plus really it is more a 'how to' in relation to some of the terms we refer to in picking out design issues, and maybe we could go as far as a glossary (or link to) for rhetorical argument/fallacy (e.g. 'straw man argument'). Basically as a quick 'catch up'

The hope I guess is that whilst the context of all this is most definitely ME/CFS, and science related to it, if there aren't many other places where these basics are linked to and then you've example 'analyses' (if you can call some of the threads that) we probably don't offer too bad an example of this.

 

The committee has made an announcement about the project discussed in this thread:
The Fact Sheet Project

Members can contribute by being part of the writing teams for two initial topics, and also by contributing information and opinions on the fact sheet development threads for each topic.

 

Yes. I have all kinds of pain and heavy flu symptoms that can hit me almost instantly as well as rapid fatigue which may occur on its own. Fatigue is the word I’d use to describe a loss of function and strength and clarity and vague illness symptoms.

I still don’t think of this as the onset of PEM it’s more like exposing and hitting the limits imposed by the rolling PEM that I am already in.

Sometimes this pain and fatigue spike lasts hours, sometimes longer it just depends. Sometimes some water and rest with painkillers will sort it. Sometimes it’s gonna be a very bad few days. I can just bounce back though. Not at will unfortunately. But recovery can be rapid, just as the onset of symptoms were.


Whereas the onset of PEM is always delayed. Used to be reliably 48-72 hours after extra exertion and otherwise just because. As the illness is capricious and a bad phase follows good. An unreliable delay for me now since C-19. I never know.

It’s like going along having some function at my disposal however little, and then -sometimes with warning signs of increasing fatigue or pain and sometimes without any -having the rug pulled on that level of function.

Being absolutely wreaked for a minimum of four days, used to be three has never been less for me, usually weeks or months now. I’m like Bambi afterward.

Edit: extra sentences to clarify.

 

….leading to an ‘incapacity to proceed’. I carefully don’t qualify whether mentally or physical and end the sentence in a finality tone. Is this a mic drop Moment? It seems to convey to doctors this is a serious enough problem to me which seems to elicit their curiosity.

Of course incapacity does have history in the UK but we are an international group and to me it’s so correct. Another way I quickly convey pem is ‘ effectively drunk post 15.00 even if I have rested in bed’

 

Not sure if this will contribute much to all that has been posted here but I'll share some points I include in my personal little "fact sheet" I carry around (in my head).

Whenever I try to explain PEM or crashes to people (including my doctor), I say that when I crash, I feel "sick" and that this is not a mere amplification of how I felt earlier the same day, it's the onset of a "malaise" and a bad one at that. To me this distinction is important because for people who only think in terms of "chronic fatigue" whatever you try to explain, PEM means that following exertion the "fatigued" patient feels more fatigued, that's it, no big deal. They think of a quantitative change, not a qualitative one.

Allergic reactions or food poisoning or fever are not exacerbations of earlier physiological states, they are processes that kick in. PEM feels just like that to me: a process has kicked in. Or something has shut down. Or both...

And about the "delayed" aspect, in my view it matters but only for specificity with regards to other forms of crashes in other illnesses. The reason I don't overemphasize it is that the delayed onset is very far from being what makes PEM life-altering: it's the duration of PEM. What I wish people could know above all about PEM, in addition to feeling awful, is not that it begins the next day, but lasts many days. However delayed a crash is, if it lasted only a few hours I could almost lead a normal life.
(anyways when we speak of delayed reaction, all we are saying is that we feel PEM hitting us 24 hours later, but the pathophysiological process surely must have been initiated right after we crossed our threshold, I don't see how it could start entirely out of the blue two days later)

 

Indeed. There is no stopping it once the threshold has been crossed. No resting, longer better sleep, eliminating certain foods- nothing.

 

But .. you can make it worse by keeping going and then often I get either adrenaline or something keeping me going or just so exhausted my brain doesn’t have wherewithal to know how to stop and it can of course be that you are at work and have no choice

I often then can’t get my body into rest too and PEM will be much worse for obvious reasons

This being able to do this is puzzling to others - you’ve gone past a point where you don’t just feel you should stop but significant signals like might collapse, but being able to do this is sometimes the only way to save yourself eg if you need to get home still (I can’t get proper rest until I’m in my bed) but also to be able to complete appointments which I shouldn’t really do but do need if I want to tackle that health thing that might help in the long run and is way beyond my limit. I do need to start looking at wheelchairs options though (difficulty there is that still involves exertion I imagine depending on how well it fits and I’d not be able to afford one that reclines and of course there’s still sensory etc - being driven if a big exertion, both of those have big symptoms added when PEM hits)