The Concept of ME/CFS

symptoms

I realise that it is a bit vague but it is the difficulty of defining or predicting the time course that I see as important.

 

Does this mean further comments on the content should better be posted on Qeios then?

 

I have sent it in for publishing. People are welcome to comment on Qeios as 'peer review' but I am not intending to modify the text further unless there is a reason to make a major content change.

 

It’s up on the website!

https://www.qeios.com/read/NXCXM1

 

22 views, 2 downloads!

 

Not gone through the whole thread here, so apologies if this has already been mentioned.

Very good, but I think there is something that should be specifically noted as an extremely common, additional and highly disabling symptom, though I appreciate it is likely covered within the more generic umbrella terms used.

Once my wife has overdone things and crashes, yes she gets the inevitable deep fatigue, like the energy has been sucked from every cell in her body (and maybe that is not so far from the truth). But when she is slumped back in the sofa like that, eyes closed and in "shutdown" mode, I now know that utter exhaustion is only part of why she is crashed out like that, because the other headline symptom is that she feels downright bl**dy ill, very very poorly, like a bad bout of flu. Which is of course how the derogatory term "yuppy flu" originated. That symptom in itself is totally disabling, and combined with the profound exhaustion, renders my wife incapable of doing anything, whereas normally she is strongly driven to do whatever she can manage. Like many others here, my wife is one of the finest examples that PwME are not that way because they do less than the are capable of.

So I do feel that this symptom of feeling desperately ill as part of a crash, is important to bring out explicitly, because it is very real and not in the least imagined. Maybe the "malaise" part of PEM should be elaborated on a bit?

Just a thought from me as a very uninformed non-medic: Has any study ever been done to to run toxicology tests on PwME when they are in a crash? Could it be that when in such an energy deficit, toxins may not being getting removed properly, and making them feel so ill? Something for sure makes my wife feel very ill in crash circumstances, does anyone know why that is? Or has the focus been only on the fatigue/exhaustion aspects? I'd think there might be mileage researching the "feeling very ill" aspect also?

Edit: Ah, realise I came into this thread too late, but I'll still leave this comment here. And I realise @Jonathan Edwards did in fact mention nausea.

 

I relate to this 100%, 'tiredness' or 'fatigue' has never been the issue for me either, but rather being hit with feeling deathly ill and toxic. And then a frightening sheer total exhaustion following along secondary to that. The idea of running toxicology tests when someone with ME is in that state does indeed sound interesting. It does feel like becoming filled with toxins and the body not removing them properly.