Ok so feeling quite pissy this morning, been on Twitter and read another of those “I kicked CFS & I have the secret, listen to my conference call and I’ll tell you all. You can get rid of it too.” It’s bad enough "well" people not understanding and belittling what you’re going though but for fellow sufferers to do it is just shameful. Fair enough say these are things that have helped me, may help you as they are non invasive, I don’t promise you a cure, I don’t promise miracles but it could be worth a try. That’s honest, that’s not psychologically hurtful. It’s like those NLP programs that claim to do the same thing, if you don’t get well it’s your own fault. I mean what is that all about? Would you say that to an MS / Lupus sufferer? No, people just allow themselves to spout this crap and their arrogance and ignorance is astounding. They also claim to be all knowledgeable on the subject. If they were, they’d know that CFS is different from person to person. I have yet to meet anyone with a similar experience to mine. I wish I could, it would help so much.

Some people go into remission some people don’t. Obviously if you are not listening to your body, you’re over doing things when you shouldn’t be, you’re eating crap everyday, you’re negative then of course you’re not doing yourself any favours. Well I don’t do those things, I take really good care, I listen to my body and it’s been three & half years now and to no avail, no periods of remission or partial remission. I know that I am doing everything I can to take control but you know what no surprises, it’s not getting any better. I’m not getting worse and that’s what I have to hold on to, I’ve not entered the 25% of severe sufferers and hope I never will. I know why I’m not getting any better and it’s not because of something I am or am not doing. It’s because I have a disease that is not understood and therefore not being controlled, it has free reign of my body and does what it wants at its will. If you’ve gone into remission then I am really and truly happy for you, you should count yourself as lucky not some Guru. You should also recognise that there are many kinds of this illness so your type may not be like my type and once the truth is out we will know what each person is fighting and what we need to do for each one. I suspect that they will find that there are types that are progressive and kill, we sadly see evidence of that far too often, and there are types that are very mild and cause few problems at all. So please do not put us all in the same pot, you’re preaching to the converted but not all of us can be saved until the illness is fully understood. We have accepted that, isn’t it time you did too?

Source: http://www.new.facebook.com/home.php?ref=logo#/note.php?note_id=112773848056&ref=mf