Search results

I am being really cautious with the explanation, because I’m still working on it and have no idea what the long term will be. Plus I have had a lot of other treatment with medication, so no idea what’s doing what. I have tried a lot of physical therapies, like yoga, feldenkrais...

Sorry, I thought you were Dutch :D I agree with you, I am totally put of by secretive stuff, I think if you have something that works well, you should give if to the world to use. But maybe that's just my Dutch social healthcare attitude speaking ;) It's definitely nothing like the lightning...

Come join in the facebook group if you want to read what it does, it’s a nice group. It’s maybe not something for a scientific forum, as people point out. I went from moderate to mild from other therapies, so it was easier for me to start this. I am definitely feeling like this is a piece of...

I have a fitbit since three years and I have been measuring my HRV since May, so I hope to have some data. I am “mild” and can off course do some activity, but any exercises (yoga, pilates, feldenkrais, rehab etc etc) are always too much and I only get more pain and no benefit. The first two...

Yup, that’s what I mean. The language is the same with all kinds of methods and the only thing relevant for me is, can I do it without PEM and does it help me? Maybe not very scientific and therefore not appropriate for this forum, but still: I know a lot of people are yearning for some...

I have skipped that first bit, because I didn’t get a word of it. Just trying to make it more interesting I guess. Later on it got a bit more practical and there was a link to a clip with an exercise. This is obviously not a science guy, but a practical guy. Who found something that seems to...

I know the enthusiasm for a physical therapy will not be high here and will be met with some very raised eyebrows. But I want to keep you updated anyway. If only, because a lot of people here are from the UK and maybe this could be an option. So I followed the therapy for two weeks in Norwich...

Just to let you know;) The facebook group of dutch people got one of the certified people out of Australia to come to the UK and start the training there. You will all call me crazy off course, but I will be in the UK in two weeks:laugh::laugh: As I am mild and no rehab program can give me any...

I am in a facebook group with people interested in these kinds of therapies and I have to clarify. To be honest, it's a very nice and down to earth group, no strong "believers" at all. A lot of the people in the group have appalling experiences with the vermoeidheidskliniek, so there is little...

A lot of wisdom here, thank you so much:):) My friend turned out to be on the verge of a burn-out. She is now not working, at home and extremely exhausted. So I think that’s where her frustration came from, that she also is really really exhausted. I don’t think she has a lot of people that...

I’m really happy, my friend called to apologize! I still don’t really get why she said what she said, but apparently she misunderstood and was angry, because she had the feeling I accused her of not understanding, and she though that was mean because she listens to my stories all the times and...

@Kitty, I agree with you. I would not have been such a good friend. I was on top of the world and although I think I would have tried to understand, probably the friendship would have faded away.

Thank you so much for your reply! @ trish: your comments are precisely on the mark:):hug: Thank you so much for writing down such a long reply, it really helps me that other people are experiencing the same thing. I was just so flabbergasted yesterday, felt like I was going crazy.. It was very...

I kind of think it is. But I’m getting some advise (and have given it to a family member with a chronic illness..) that not everybody can be understanding and if you judge people too harshly on not understanding your illness or what it means to your life that you lose everyone around you. What...

Why are you diagnosed with ME then? Muscle problems are literally in the name and in every definition as well.

I completely agree, Invisible woman. That is the ideal way and we should definitely strive for that. I do find that for myself, personally, I am a bit more inclined to try some stuff, if I think it will benefit me. I am not going to wait until I am 60 to be well again. I think I now know my...

I agree that the website is pure marketing, but I have never found that there is much correlation between what people say (or think) they do and what people practically do. I have had an absolute abysmal rehabilitation in an academic centre and I have had wonderfull experiences (pre-me/cfs) with...

I don’t know why that first person from the netherlands went to australia, but the rest went because she is now recovered and working again. He doesn’t advertise as an me/cfs program at all. From what I’ve heard from the people that went there, it doesn’t seem like a lightning proces scam...

Well, don’t be worried, I won’t be rushing of to Australia soon:laugh::laugh: If it turns out to be genuine, we will see.

There are a few people in the Netherland waiting for this rehabilitation, but in the mean time trying some things that seem a bit similar, like feldenkrais and neuromovement. One girl reported a nice effect on her severe OI, sitting up for a few hours instead of needing to lie down after a few...