ME-Gids.Net

Thank you Eressea in fact it's ImPatient, to stress how I don't like being a Patient, doesn't really relate to a character tract
Annemontje: I am very sorry to hear that, I was like that for the first two years, having to rest for hours to be able to go to the toilet, cooking vegetables in one piece because I couldn't cut them, oh yes, sounds familiar I have to thank acupuncture, I was really lucky, even if after the first improvements it took three years in the countryside and a LOT of work for learning to perceive the signs and stop immediately when the body says so.
Still now I spend hours everyday in meditation listening to the body, but sometimes still I miss some important communication, apparently
I know well it's not curable, but there are people who have been better with alternative therapies, and I very much discouraged with "western" medicine, having seen many friends (and myself) going from doctor to doctor and getting worse all the time, this is also why I will pass DeMerlier. I am sure he is a great doctor, and I will indeed go talk with Dr Van Meerendonk to have blood tests prescribed and those things that general doctors don't always prescribe to people who "look" healthy, but personally I feel my system is already messed up enough without putting antibiotics into it.
PS together with acupuncture, I did do some really weird diets and treatments to cleanse the bowels for years, so who knows what really helped, De Merlier might be right

that is just my humble opinion and experience, of course

which you are totally entitled to!

I've tried almost everything possible because I'm also not fond of medicine at all, had the best acupuncturist in the Netherlands (chinese traditional, very well known for his results for ex. with neurological diseases) for almost 2 years, and lots of other natural remedies and methods, one of them being Art of Living, in 11 years in total (sick for 13,5 yrs now). All helped a little or a lot and made me feel better and be able to do some more, but after a while (weeks, months) I've always felt back, everytime worse than ever before. I'm afraid that (in my case definitaly) alternative medicine or meditative methods etc. just isn't the total answer, although I'm very glad I've done it all, it for sure helped me delay the progression (I believe it has anyway). By the way, DML isn't fond of medicine either per se, he likes to use natural stuff whenever he can (for example for chelating heavy metals, instead of drugs he uses a herbal remedy) and he believes in probiotics, foodsupplements etc. But he has to use antibiotics and other medication too in order to get results no one seem to be able to have in at least a substantial part of ME/CVS-patients. Maybe ME/CFS is one of those illnesses like cancer (it has a lot of similarities with) which can't be treated without medicine.. dr. Van Meerendonk sends people to De Meirleir often too when he doesn't know what more he can do.

And that's just my humble opinion..

thank you for sharing that - in fact what I suspect sometimes is that there are more than one ME/CVS, and because of this it is still so complicated to find a solution good for everybody, or maybe just people's bodies are really different and some react in one way and some in others. Anyway, whatever works, is great, isn't it?
Sorry for all your years of troubles, and congratulations for trying all those different things, I hope DeMeirler can help you.. But I guess the key is to make the effort to be positive, and try (with a grain of common sense, of course).
I had a lot of help from buddhism, which is an art of living too I guess but I am sure all spiritualities can be in a sense healing, as long as they help "accept" the situation without suffering too much for the loss.. Acceptance is good for the SNS and immune system, don't you think? well, have a good day you all

I agree with what you say about staying positive, has never been a problem luckely, my shrink (we all see one or more in our years of illness I guess) told me she never met anyone who was such a happy and thankful person especialy under the circumstances I live in (most people she saw were often deeply unhappy without real reason) and by last year I've never been happier with myself than ever before, thanks to all spiritual things I've done and Art of Living and things like that. Has never helped me physicly though... And it doesn't mean I wouldn't be even happier when I would be able to have some sort of a normal life or that I can't be sad at times, but I don't need it for my happiness and most of the time I feel very good, mentally that is...

annemoontje schreef: able to have some sort of a normal life or that I can't be sad at times, but I don't need it for my happiness and most of the time I feel very good, mentally that is...

beautiful.. sad but beautiful

tnx How are you? Are you setteling in the Netherlands? Finding your way a bit?