Please allow me to speculate here. Suppose Phair is correct and there are in fact two metabolic traps, #1 IDO (tryptophan) and #2 Tyrosine. Would this perhaps explain the 2 types of ME/CFS I see reported here. First, there is a group of people who have fatigue and brain fog (Brain ME/CFS) and second, there is a group who report significant PEM from physical activity but do not report much fatigue or brain fog (Body ME/CFS). So perhaps the two groups might be trapped in different places. When I hear people on the forums claim that they don't have any (or much) fatigue I think that we must have different diseases. Maybe we are just trapped in different spots? Yes, I know that neither of the traps have been proven yet, but again, I am thinking out loud here.
Well, i can only speak for me here. I have extreme brain fog, to a degree that i forget my own name. No joke. But fatigue isnt keeping up with that. Sure, i couldnt run a marathon now, but a can walk for 30min to 1h without feeling the fatigue kickin in but the brainfog and cardiac problems killing me. So do i have half of both traps then ? haha
I personally don’t think there are different types of ME. But I do think that symptoms can vary from person to person. I have fatigue, brain fog and PEM, along with hell of lot of other symptoms.
I definitely believe that there are different forms of ME. Just as there are different forms of cancers, diabetes, respiratory infections, headaches, etc. it wouldn't surprise me if there are several different causes of ME/CFS and each possibly requiring a different form of treatment. My ME/CFS is 80% fatigue in the form of exhaustion, so when I hear people claim that they don't have fatigue, I shake my head and wonder how can we possibly have the same condition.
Hmmm I see where you are coming from, it’s a difficult one. Because fatigue is very grey area and people tend to have different opinions on what they think fatigue actually is to them. Do you think that when people say they don’t have fatigue, they may actually have it? But because there other symptoms are more severe and troublesome, they just don’t notice it’s there?
Also, another thing I thought of. Maybe fatigue isn’t a main symptom after all. It’s possible you could be right. I still think because it’s a neurological disease, you don’t necessarily have all the neurological symptoms which severity and symptoms varies from person. Until more research is done we will never know! It certainly will be interesting to know the outcomes. Edit: reading that back it’s not making sense hahaha 1: you don’t necessarily have to have all the neurological symptoms as severity and symptoms varies from person to person.
Maybe the severe have both traps? I concur, ME is most probably a spectrum disease. I recently learned there are really Alzheimer's diseases (plural).
This is why I think that when we have a better understanding of ME/CFS, we will find out that there will be different types. If people say that they don't have fatigue then I have no reason not to believe them. For some it could be that other symptoms over-power the fatigue so that they aren't so aware of it. Many years ago my Dad had a brain tumour but he didn't notice the headaches as they were so mild. It was only when the doctors started asking about his symptoms, that it dawned on him that he probably had had a very mild headache for some time. For him it was the fatigue that really stood out.
Or it's just me/cfs or fatgue/PEM on the cellular level constrained to different areas of the body, ie: the brain rather than the muscles.
Prof Chris Ponting said at MM it's a series of devastating disorders. There are 8 subtypes of asthma, 3 subtypes of MS and over 300 subtypes of rheumatologic diseases. Think of the enormous variation within MS.
Fatigue for me means tired, means gotta sleep. So I am not fatigued. i very seldom sleep during the day. But i meet the CCC. I have post exertional ‘malaise’. i got sick after mono. i have muscle fatiguability. i have increasing cognitive impairement upon physical and mental exertion. i have POTS, which means that gravity pulls me back to horizontal. Just like there is 50 shades of grey, there are different shades of ‘tiredness’
I think it’s quite likely that there may be more than just symptom variation going on but it’s difficult to tell until we have objective measures. Because of its nature (multi-systemic...I’m making an assumption here as well), our perspectives on symptoms are probably clouded by loads of variables too (how well we pace, what environmental conditions we have, our priorities, wrong correlations etc etc.). This makes researching the problem ...well problematic. Hopefully once we have some diagnostic markers, things will begin to fall into place... oh, and some more money for research of course. I agree with others though...symptom presentation and onset type variation does suggest there may be different types of ME .... it can’t all be attributed to misdiagnosis that’s for sure.
I think fatigue in ME is like other diseases it can be there or not the problem was when they made it the cardinal symptom. Before that fatigue was just something that some people had like gut symptoms, say. I have fatiguability, I go on then suddenly stop, wait a few minutes then start, also neurological problems were the main thing in the early days and still continue. I could walk quite far but if I overdid things I would forget how to get home for instance. After CFS was invented though, it seemed to me like some people thought what they were feeling was fatigue because they were told that's what they had. When they described how they felt it was more like me. Nowadays I find that pain often stops me doing things before I reach the point of fatigue and that may be common. In the days before CFS there was a debate going on about whether EBV lead to the same disease as enteroviruses. it was never resolved because the US dropped enteroviruses and concentrated on EBV. It could be that enteroviruses lead to neurological problems and EBV gives fatigue. A few years ago I suddenly felt overpowering constant dragging fatigue. I thought that it had finally caught up with me. Turns out I was diabetic with sky high blood sugars. That was treated and the fatigue went. Just remembered as I type this. I get fatigued when my OI and POTS is bad. That could be a factor as well. An interesting thing to discuss.
fatigue is chronic exhaustion, all over the body. tiredness changes and can make it impossible to keep upright. its like sort of "torture".
