Hi, am learning lots about the condition, and i know symptoms can fluctuate. i just wondered can the condition itself progress.For example could a person who has mild CFS, progress/deteriorate to moderate CFS or moderate to severe CFS?.
thanks
I would say yes.. Ive had it for 21 years.. it has fluctuated over that time, but with every new relapse i seem to get more new symptoms 
But thats not the same for everyone. My condition has varied from moderate to severe and back again many times, but i am lucky in as much as i get long periods where im still mobile and able to have a life of some kind. Others are not so lucky and are constantly stuck in relapse mode .. its such a wide variation.. what one person will experience , will not be the same for everyone else. Always best to focus on your own journey instead of how its effecting others and worrying if that might end up being you, because nothing is written in stone with CFS. 
That's really enlightening for me littleme because I've had it for 10 years and I always wonder what people mean when they mention relapse because I don't get enough respite to experience relapses. It's been more or less the same all the time.
I am sad to say in most people YES to your question, having had ME for close on 20 years I can see a downward decline and an extended recovery period after a relapse, and the relapses are closer together than they were.
Staying positive and looking forward to good days gets me through the bad days.
Nobody appears to have the same symptoms or reactions to M.E. and the treatments given to aid recovery. However, as old age comes in to play, the underlying cause can at times be down to having M.E. such as developing osteoarthritis, which is a common condition in an ageing population. (Also known as degenerative joint disease or age-related arthritis) exercise is said to help this condition such as walking and cycling but with M.E that is the last thing you can do.
Every part of the body can be affected by M.E in some way, the Brain, speech, muscle control the list goes on and on, my neurologist at the hospital told me the more damage you do to an impaired body the heaver the toll is on the body over time, making recovery times longer and longer. He did go on and say I needed to just potter about and take greater care of my body.
I did not have the heart to tell him I have little control on the way M.E affects me and my life, as pacing is difficult to manage with such a fluctuating disease. But you tend to work with the “deck your dealt with” in this life and give it your best shot.
Yes
so it's a tough disease as you almost walk a tight rope of having a life to prevent depression due to not having a life ..and not doing too much so as to relapse or worsen...
once you learn to have a life with cfs without relapsing you do see improvement ...but it's a tough tight rope to walk ..takes time to work out your balance that also enables you to move forward ..
Thanks littleme, I just wondered because I think I have it mild, but having flare up every few weeks which last days or weeks, longest being 4 weeks. I Think I have had it a long time, but never crashed up until this last 12 months, and crashed several times now, so I wondered if it progressed. I know I am very lucky compared to others so I am not complaining at all, I just want to understand the condition really.I can manage to work, but take time off sick when bad.
Thanks so much for the reply, it sounds like you have it severe dragon test . Am so sorry to hear how bad it gets for you. I think positivity is a wonderful thing, but hard to do when your having a flare up. I really didn't realise it got progressively worse, I thought people had it at different severities from initial diagnosis.
I can imagine, my problem is the boom and bust , and on good days I feel normal, am so lucky to get weeks this way, but I need to now learn to not over do it, but that's the hard thing to know what will tip you over the edge and make you crash. I can just wake up and boom am crashed, it's so weird. And that's what worries me about the future, if it progresses and work etc.
The clue is in ' flare up every few weeks' how much are you doing between flare ups? Try reducing what you do and see if the flare up goes to a month. If it does then that is progress.
What I did was to find the point where a flare up would last only a day or so. Then I used that as my base energy point so I went several months without any flare up. I then built on that slowly, bit like someone trying to run a marathon, you never run 26miles at the outset. Slowly my body has learnt to accept those new energy levels and its working. but its very,very hard to control yourself and you mustnt be tempted to say I will just do one more thing and then stop
Thanks, I am just getting over a flare up so am still just being very careful, but have decided to cut everything right back, maybe just a little walk with dog, and gradually build up a bit more. When you say you used the point of flare up as base, would you then just build up gradually again?
Yes. It can progess, as it did in my case. After a relapse, I developed new symptoms, such as nerve issues (burning, tingling, etc.). That's why it's so important to pace yourself.
One thing i have learnt about this condition is its made worse by hormones.. I get increased symptoms when i ovulate and also a bit around my period.. so it may be worth doing a chart to see if thats your issue also
Yes so once I know the energy level that doesn't cause a flare up I start from there. But its a very gradual build up, so if we take walking dog as an example I would start with say walking the dog to the end of the road, the end of my road is not very far!. If that doesn't cause a flare up do that for say a month. Then next month add on say 10% of that distance. Keep doing that for several weeks and if no problems add another 10% if that makes sense.
I also never do an exercise like walking the dog every day. My exercise has been cycling so I would leave several days rest before I try again.
The problem is that everyone is different, but for me the success has been very small steps. I was a world class boom and bust person, just ask my GP, until I started pacing and for me it has been very successful.
Tomorrow if the weather is nice I am planning to break my cycle record by going a bit further. But I have been resting and building up energy for this. However, if I wake up tomorrow and don't feel good it will get shelved for a few days or I will do something very easy. I listen to my body now and only push it in small amounts but I at last feel I am winning
Thanks Jackie, i will definitely start taking things more easily, and learning to relax more, thanks so much
Thanks littleme, I will definitely keep an eye out. Thanks you
Aw that's fab thank you, I will do something similar and see how I go, fingers crossed,
thanks you
Hi
What wonderful advice.
That for me is the hardest part....reading my body!
In time.,
Thank you
Hi nichola,
I have discovered that finding your "good" base level and pacing yourself works but everybody is different. What I can do on a good day maybe is perhaps as much someone can do on one of his or her bad days. Looking on the bright side and being positive is of great help to me.
Graded exercise therapy (GET) program was not useful to me and made me relapse most of the time. I was involved in the PACE trials years ago and did not find any help from being involved in that. Nevertheless, the doctors generally think Graded exercise therapy works for some reason. Perhaps it does in some…
Hormones may be to blame in some cases as the ME ratio is reported between the sexes is 10:1 female to male split, I do not know. All I know is it sucks...
Yes, but being calm, relaxed and centred enough to pace must be a crucial part of it and if someone with ME has high anxiety levels it's really difficult and almost a catch 22 situation. Because I find that the self discipline required puts more of a stress load on me and defeats the object.
Also I can't force mysellf to relax by telling myself to; it doesn't work. I just go to sleep or rest when I need to. An occupational therapist told me to have pillars of rest rather than my usual 2 hours sleep in the afternoon but that's just not the way my body works, or my mind, we're all different.
I agree with pacing but in our own individual ways and not by an overly stricly self enforced structure or doing it how someone tells us to.
I'm only speaking from my own experince of living alone and going through menopause. I hear such good results from a lot of people and it's clearly great for you dragon.
I just feel guilty and a failure when I keep reading about pacing though because I can't do it. I have to do all of the things necessary for survival myself so it's what's necessary when necessary to do, as long as I eat and deal with things as they arise I sort of basically function, and rest and sleep when I can.
Hi Georgia
You are not a failure!
That's the awful thing about ME.
When you think you have got a handle on it suddenly it strikes again.
If it's any consolation, I am still persevering with the pacing, mostly on goodish days and brill days ( like you I sleep on bad days, it's easier) and That,'s after a year. I've had it for 3 years but only come to terms with it in my head about a year.
I think you will beat it .....when you become, like me, the warrior that we need to be. It is a fight but one your brain has to take control of.
It's a bit like getting to know yourself all over again but in miniscule detail; odd, I know but that's my perception of it. I don't think anyone beats it short term but long term, Yes, many do.......so there's hope.....
Let's hope we are among the thousands that beat it.
Jinny 💝