A common theme for those who've recovered seems to be:
1: Meticulous measuring of activity levels, pedometer etc.
2: Finding the amount of activity you can do every day without feeling worse, and sticking to it (this requires that you're able to avoid any additional external demands... actually that could be no. 3)
3: Avoid any external demands/desires which could side-track you. Pacing activity levels being the sole consideration.
4: When you got these things right, gradually get better...
Saying that, I've spoken to people who have recovered using just about every quack cure imaginable. Quite a few people seem to have something else wrong with them, and when this is identified and treated, recover from CFS. Individual cases aren't terribly helpful for guidance, and CFS research seems to be such a mess that we don't have access to terribly helpful studies.
I'm still ill, so I'm not terribly confident in any of the above. I've never really intensely committed to the pacing stuff - but I've only just been in circumstances where I realistically could do, and that seems to have led to some recovery on its own. Very often CFS brings with it other problems (poverty, etc) which make it even harder to take care of yourself properly.
I'm still assuming 'CFS' has lots of causes, and those who recover could happen to have a condition more amenable to treatment than others. I really don't know though.
Good luck with it all though.
Hi Blinky.. i had a what i thought was a complete remission for 2-3 years (which came after 5? years of illness, 2-3 years of that was very severely sick eg bedbound or housebound). I was that recovered that I even completed in and did a 2 day marathon without post exertial fatigue afterwards.
I achieved that by basically the advice Ester gave above.. except i didnt use a pedometer, I just guaged activity levels of whatever i was doing and used a clock to make sure I didnt go over my limits. Think of each crash as you have that you are sending yourself away from healing.. and aim to never trigger your symptoms off, this means trying to do less than you are capable of and avoiding anything which will cause more symptoms to come in.
This is VERY HARD work to do as it means you will need to change MANY things in your life to do it... eg limit friends and family visits, miss things you may want to be going too ect and will mean having to simplify every part of your life so things are easier and you can do less. It involves finding new ways to do things.
I also set myself enforced rest periods even when I didnt feel like resting or think I needed it (This is called ART=Agressive Rest Therapy). In that time I made myself go to bed and try to sleep (or if i couldnt sleep I'd just lay there with eyes shut). I'd do "ART" every afternoon. If you know by a certain time of most days you get tired.. set a scheduled time to do ART an hr or two before that time happens. It was "ART" time the moment I could feel a crash coming on, I'd send myself immediately to bed for THREE days and stay there, I hated to spend that much in bed but I realised this ART really helped me CFS wise. I've heard of others using ART and being helped a lot too by this.
(of cause we are all different as our CFS is currently at different levels of severity and what was right for me time wise, may not be right for you). Some may need only half a day in bed to ward of a coming crash while others may need to be there for several weeks. (always aim to be in front of your symptoms, like to try to outwit the CFS). In my brain I saw myself at war with the CFS and my strong point was in strategy and defence (rest).
I basically lived by a scheduled program to make sure I got the rest I needed and to help stop symptoms. (each day when i first got up, I'd set my program.. from the aim or aims of that day.. all broken down into managable time slots.. to the enforced rest times etc).
On top of that you need to work out if you have any coexisting things going on eg Postural orthostatic tachycardia syndrome, food intollerances (avoid all foods you find you are sensitive too), chemical or mood issues (if so you need to completely avoid those things) etc.
I went out of Remission when I stopped listening to my body as I truely thought I was fully over the CFS as I hadnt crashed or got sick in so long.. so what harm can really pushing myself when feeling healthy kind of tired and feeling a little unwell, probably due to a cold or something do?.. and ended up suddenly then having to my surprise a minorish CFS crash, then before i was over that, someone pushed me with something and hence i then severely crashed futher.
Ive spend now 4-5 years, trying to get back into remission and thou i can stop my symptoms by doing the things I got well doing in past (i can by that go weeks without any CFS symptoms except not a great brain and a very occassional POTS hit). Im nowdays left not able to do much at all without causing symptoms so living a severely restricted life now wishing I'd stayed in remission where i was doing everything again. My body doesnt now seem to heal whatever is wrong. i still thou have hope of going back into remission again at some point. (im better now then i was 2 years ago). Getting into remission Ive found to be a slow (may take years of doing things right), hard process. Last time it took me 2-3 years of trying to get into remission.
Getting a handle on infections is a key step.
