So far I haven’t covered in detail the most characteristic aspect of ME/CFS:
Cause, symptoms, treatments, they all vary from person to person so that in effect everyone has a unique condition. Added to this, there are fluctuations in the severity of symptoms both long-term and short-term.
- Long-term – symptoms and their severity may alter, usually lessening if the person is coping well, but there can also be relapses where symptoms become worse than ever.
- Short-term – often the person appears perfectly well, then without much (if any) warning they can become severely restricted in their activities.
In-between these two extremes there can exist the feeling of being ‘not quite right’. This in-between stage can persist for months at a time without the person developing the extreme pain, fatigue, etc that are commonly held to be the most disabling symptoms. (More on these three stages later)
This variability makes ME/CFS a difficult condition. Difficult to diagnose, to try and treat, to research, to live with. Difficult to believe in. (It’s easier to accept and understand when there’s a visible symptom, less so when there isn’t, and it gets even harder when the sufferer can go from living their life to incapable of cooking a meal within a single hour.)
So although variability isn’t in itself a symptom, I think it’s a major part of ME/CFS, and learning to accept that – that changes can be fast and unexpected – is an important step in coping. Also to be aware that your syndrome may not stay exactly the same the whole time you have it – when I was younger I got quite a lot of joint pain and headaches; recently I realised I don’t get those symptoms so much but the brain fog seems worse and I’m more sensitive to noise.
True variations? Or something I’m picking up on since I started researching current thinking?