Katie:
The mitochondrial aspect of the condition really explains the symptoms and the reason things like graded exercise can be unhelpful. It explains the nature of the condition and (seemingly) how best to approach recovery.
In terms of cause and effect, I don't see CFS as a mitochondrial "illness" - necessarily. Mitochondria can be damaged or impaired by: nutritional deficiencies, things like hydrogen sulphide from gut problems, viral illness, toxins, allergies, acid/base problems from overbreathing, overwork, etc.
It's easy to see how a combination of factors - say: a long-term nutritional deficiency and a bad viral illness; or: a food allergy, mercury fillings and a period of chronic stress - could tip a stressed system into a chronic state, where homeostatsis itself becomes impaired, and we begin to accumulate burdens -> vicious circles -> syndrome.
So I don't doubt that things like XMRV, mycoplasma infections, mercury fillings, candida, chronic hyperventilation, etc. can be *central* to an individual's 'symptoms', by impacting mitochondria, but by their very nature, *syndromes* don't tend to have simple cause and effect explanations. Which is why when people treat a very specific aspect of the illness in isolation - such as taking antivirals - they can experience symptomatic relief, but you might be stuck on antivirals forever if it's metal toxicity, an allergy or nutritional issues which are impairing your immune system in the first place. (But poorly functioning mitochondria certainly fit into this vicious circle because you get more free radicals in the system when they slow down. But without the detox regimes and investigating allergies and gut problems, mitochondrial support alone might not be enough to actually pull you out.)
Looking at why the mitochondria have gone wrong should explain what you need to do to get better. (And lifestyle is going to be central to this... I know there's a need to balance healing - which can be a long process - with living a life of some sort, but sometimes you really do need to go backwards in terms of what you do and expect from yourself in order to go forwards... And the mitochondrial supplements definitely give me a buffer, over-spending wise, which makes it easier to pace and function. I've also got a rescue drink I use when I do go over now: 1tsp D-Ribose, 1tsp Maca, 1tsp Vit C, 1/2tsp Malic Acid, 1tsp L-Glutamine. But the buffer gets better as you do. Which is why recovery seems somewhat exponential. SLOW, but exponential. And I *may* even be at a point where I can benefit from graded exercise now.)
@Knackered:
It's funny because your *battling* attitude is so common in Type A personalities who tend to get this condition. (Being able to accept someone else's opinion without agreeing with it is useful in general if you want to keep healthy. Over-reactivity and anxiety are common early stage symptoms though.)
I've talked to people with CFS before - I've got family members and friends I've known since first school who've had it. I've been on forums before too... You can instantly tell people with good attitudes from people with less helpful attitudes. And optimism, acceptance, rationality are probably central to getting well... The people who are more concerned about arguing semantics all day have usually adopted helpless/futile attitudes towards their condition, and will wait around for some kind of magic bullet cure while not really seeking anything tangible which is likely to improve things on a day to day basis.
I'm far from 100%. I'd say I'm about 30-40% well from 10-20% almost 2 years ago. What's significant is I've found an approach which makes recovery very consistent, so where I am now is of less significance than that. I don't believe there'll ever be a magic point where I've suddenly not got 'CFS' any more. Everyone has different limits. I know plenty of people who get so tired after work you'd think they had CFS... Medicine sees MANY conditions this way these days: that there's sliding scales we all fall on. Not just with CFS but with things like: autism, schizophrenia, depression, etc. They only become classifiable 'conditions' once symptoms impair everyday life to a certain point. Treatment is about control; there might be no definable 'disease' there to treat.
I think it's worth sharing because my case was one of the more stubborn ones - I'd get breathless and my heart would beat at 180 just moving my arm in bed sometimes. I'd need to spend 10 minutes getting upright from bed to avoiding fainting. I spent years with a level of fatigue which made just breathing feel too exhausting to maintain. (Used to fantasize about being hooked up to a mechanical breathing device so I could rest my respiratory muscles.) I remember not being able to walk the length of my garden without seeing stars and feeling sick for hours... When I hear people talking about CFS and still being able to work part/time or go on 30 minute walks, I think that's a LONG way from the severity a lot of us wind up in.
And also, without my daily attention to pacing and measuring activity, I could believe I'd spent a year on every protocol and supplement under the sun without making much improvement - and I might have given up. (I've shown recovery can be very slow - possibly too slow to notice. But with 700 days of records, and having a routine which tackles many aspects of the condition at once, I can know beyond doubt that I'm in recovery, and I can plan and structure my life around my current, and expected, energy levels.)
I actually hate the terms 'CFS' and 'ME'. They sound too much like diseases.
My symptoms have been severe, but I've always referred to it as 'burn out'. Now I just refer to it as: 'I get tired sometimes'. (Mental attitude exerts a HUGE influence over the nervous and immune systems. It's why placebo medicine and plenty of alternative works so well.)
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