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I think the placebo effect is pretty big in this disease, because there is a lot of fluctuation in symptoms. Maybe not with severe patients, but with mild-moderate. If you really believe you will get better, you can also push yourself a bit more. When the amount of time of the study is short...

I agree with this. I don't want to dismiss people's personal stories or dismiss their suffering, but we really have to be careful about these kinds of stories. I've seen the backlash in the last few weeks in the Netherlands after the health counsel report and start to believe there might be a...

I really believe in preventative medicine, I think there should be so much more emphasis on diet in the primary practice. Could be a dietician giving the advice off course. Not knowing anything about food as a GP, just makes you look a bit dim. Food is not a medicine, a medicine is curative...

Good to hear you are better Tal!:thumbup: Do you know why you got the medication you got? Based on what tests? As far as I know there is no test for central nervous system overarousal? If we hypothesize that ME is actually a brain disease (maybe only in a subset), medications for other brain...

Thanks you so much, David!! For everything that you do:) I was really moved by the video, good to hear that you're ok:thumbup:

This is interesting. My T3 is just at the lowest point of normal, but T4 and TSH are normal. My TSH is even pretty low.

Haha, this!! Definitely! It feels the same for me too. I think I'm spending more energy on the same tasks than other people, but I'm also getting my energy back rather slow. With the accumulation, I mean that sometimes I spend energy one day and then the next day I still feel "ok" and then I...

Wow, this is pretty scary! I think this whole MUS thing maybe started out a loooong time ago as a good thing, as a service to give help to people who had an illness we couldn't diagnose yet. Somehow, through the years, it became a diagnosis on it's own (as MUS or BSS). And now the people that...

Boom and bust theory is about the biggest nonsense ever.... The funny thing is that a normal training effect is actually training and then "resting" for a day or two. So if they are really going for the deconditioning-theory, then training would not be "doing the same thing every day". Proper...

I have wondered the same thing often, about myasthenia gravis. My worst symptom is muscular fatiguability (extreme weakness), but it is post-exertional. When I try to ignore and push through, I do become ill. Also, I don't have eye problems. If I rest long enough, the strength seems to come...

:)Yes!! I am just going to be excited! I think this is the best advise we could have realistically hoped for. It’s a good start! No forced cbt and get! Acknowledgement that ME is complex, multisystem and debilitating and therefore a right to get disability benefits Advise for medical...

Oh no, I'm so sorry!:speechless: I though you and your wife said that about the doctor. I thought it was meant as:" getting a doctor to treat your ME? You might as well go to the butcher..." But the doctor said that to you?? :jawdrop: I can't imagine going through this at that age. I was the...

O wow, I was so dissapointed yesterday:confused: I listened to the radio interview and that was so good!! Lou Corsius was explaining very well the problems with PACE (and other research) and the director of the documentary really seemed to know what the problem was and sounded well informed and...

Yes! This! If this is just a misinterpretation of normal signals, why didn't I have this in the years before? Why could I just start up again after every week of flu, every broken bone, every period without serious exercise? As if we havent experienced any discomfort in our previous life, to...

Yes, I thought that was pretty interesting too. You see in every field that the people who really know their stuff and are real experts (in ways to actually help people with the actual problem), they never go for the psychosomatic route. It really is more a thing of incompetence, not knowing...

Interesting to see that the same thing is happening in other diseases, sounds familiar... Craniomandibulair dysfunction, this time:banghead: http://news.doccheck.com/en/7547/cmd-whos-cracking-the-case/

I think it's not that bad, but it all comes down to two things: They should not give you psychological therapies instead of organic ones. So it should be a complementary service. They should not be telling you what you do or do not feel. You should be able to ask for therapy yourself when you...

I don't ever go to my GP. I "save" him for when I actually would think I have something else. He can't help me with ME anyway, and at least he will take my seriously when I do have something else. The document is written with hypochondriacs in mind. In this theory about stress and somatic...

I have been reading a lot about BPS and MUS theories lately. Not really because it affects me personally, but because I find these theories weirdly interesting and also a bit shocking to read. I thought it was interesting to look at other MUS categories, to see if we maybe could learn something...

I think we are underestimating the appeal psychosomatic approaches have on people. It's not just crazy doctors or an easy way to get rid of people. I have friends who think every illness is linked with a certain emotion. I know people who think they can beat cancer with the right mindset, yoga...