I’ve come across some NHS info which says that pwME might not know why some days are good and some bad, whilst it seems there’s no reason, it’s down to energy use. I don’t know why it’s bothering me so much - is it true? I don’t know that it can be proved, can it? Or is it the “blaming” tone? Your thoughts please!
Probably one of the better clues is in Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients (2023, International Journal of Molecular Sciences)
Yes, physical exertion (which implicitly involves energy use) leads to abnormal recovery in ME. We should do a lot of "inflammatory cleaning up" in the 1-2 days after physical exertion and that seems to not be happening in ME. Healthy people excrete metabolites in their urine and patients do not. That suggests the possibility that the unexcreted metabolites - or more likely their precursors - still in the tissues or bloodstream cause symptoms, experienced as a bad day. Rather than inflammation following muscle use, it may also be that simply using more energy is bad. If the mitochondria are impaired they may not control their production of reactive oxygen species, leading to things like immune activation and inflammation. I don't think any of this is known or proven yet, but the simple idea of post-exertional malaise is that over exertion leads to a bad day(s) later. In their leaflet the proxy for exertion is "energy use", which seems a reasonable term to convey the idea.
I dislike the 'energy issues' conceptualisation of ME/CFS more and more. I really don't think it is energy depletion that is the problem. That does not add up to me. Why does reading a book produce the same (or similar) consequences for ME/CFS patients as going for a long walk? Reading does not use energy in anything like the same manner or degree as walking. It is the consequences of any activity that is the problem, not energy depletion, per se.
Aside from PEM, my bad days are often down to my hormones. Monthly cycle has a huge impact. Took me a long time to realise as the symptoms are just a ramping up of all usual ME symptoms and it happens about week 3-ish of cycle so I didn't make the connection for ages, it just felt random and I couldn't work out why the sudden increase in symptoms when I was managing energy effectively. So I get your frustration - energy usage is definitely not the only thing that causes bad days. But over energy usage does always cause bad days. If it's being implied that bad days can be avoided through energy management, that's inaccurate. But they can be reduced!
I don't think we have any scientific evidence base for this. Changes in urine metabolites may be completely irrelevant. Apart from anything, most people with ME/CFS do not spend half an hour on an exercise bike on any day of the week!! I think this is just bullshit from BACME type people - probably physios - pretending they understand the mechanism of the illness when they know nothing. It is a general observation from patients that they often feel worse after exertion but turning that into some bogus physiological explanation to explain back to patients 'what is wrong' is completely phoney. It is part of a health professional strategy to sound knowledgeable by sounding plausible or familiar. Health care isn't about that. It is about providing patients with advice based on reliable evidence that is not obvious to them already.
Is there any data as to how many of us experience full-blown PEM solely after increased cognitive activity? I may be something of an exception here because I do not (significantly increased brain fog yes, but the dreadful flu-like PEM occurs reliably only after physical over-exertion).
Can you copy the relevant bit, or photograph the pamphlet and upload it to the forum? It may be an attempt to write in 'plain English' a description of PEM.
Oh good, it's not just me. I think it's a model that kinda-sorta fits what PWME experience in a very limited degree, but which is misleading when pushed beyond that. If people read "energy" frequently in ME studies, they assume that it's a proven model, and that treatments for "boosting energy" should work, which they don't, because the model is invalid for ME. Ah, but do you know 100% for sure that it's actually energy usage that's to blame? For many PWME, the activities that trigger PEM generally correlate with ATP consumption, but for many others, there are activities that trigger PEM which don't seem to consume much ATP. For me, a 40 km strenuous bike ride didn't trigger PEM, but climbing a ladder a few rungs did, so it's not as simple as ATP consumption. There are other body processes that correlate with exertion, such as muscle microtears that activate the immune system. Maybe there's some process involved that hasn't been discovered yet. I think there's enough counterevidence to the simple "energy usage" model that it should be dropped. The best I've come up with so far is simply "exertion", whether that's physical or cognitive. Is there "emotional exertion"? Also, why does socializing for less than a minute trigger PEM, while processing a lot of visual input (all those visual cortex neurons firing while watching a movie or walking in the woods) does not trigger PEM? Is it a difference in neurons or their support cells, or blood supply or glymph drainage (ability to remove waste), or hormone sensitivity, or something still undiscovered? Science starts with asking questions. Hmmm, there's another argument against the use of "energy" for ME: blindly accepting that term hampers the asking of questions, stunting science.
Exactly. Their explanatory and therapeutic model has to assume we are delusional morons, incapable of figuring anything out without their expert guidance. As soon as that assumption is subject to robust examaination the whole thing falls apart.
I've had ME for decades and I still can't tell what causes PEM most of the time. I do know that three days in a row of strenuous activity (for me) may lead to a single day or a few weeks of PEM. At other times it can happen out of the blue without any apparent cause. A sure sign I have PEM is sleeping soundly for 8 hours after which I generally feeling drugged all day in spite of it. When I eventually have a bad night's sleep I can be pretty sure I'll feel tired but able to face some housework or shopping. Long ago I gave up trying to predict any of it. I just do what I have to and take what comes. There is only one thing that is sure to bring on a day or two of utter exhaustion and that is socializing. As @Creekside says, it can be less than a minute. I can 'feel' the effort it takes to have to relate and react to another person instantly, in real time.
