Search results

I don't have trust in them, I'm sorry. Thanks for all the info here!

There was a "rule" in coaching - don't use "not". I and others will actually overread the "not", i.e. "I'm pretending to be sick". Don't know actually if that's true for some or many...I just know from myself when I had bad nausea, to think "I'm not unwell" won't help with it, but "I'm well"...

:rofl: It's less than that - it's just being tired. You shouldn't exaggerate things, you know :D

Thank you so much @Gingergrrl for your post! You motivate me to demand my EMG and ENG test results from the neurological clinic (although I guess it didn't show something; I guess SFN is more probable).

Just came across this thread, and it's pretty interesting for me. I'd say the same in my case. Fitness, muscles, nerves, pain...all this seems to get worse and worse, whereas cognitive function isn't. I, too, would like to be properly checked for mito issues or whatever... On the other hand, I...

I agree @Alvin. I view this idea as one possible step. I think there's also another big problem: Some/Many ME organizations. Can you imagine AfME would use the slogan "ME: The disease of the living dead"? I can't. If I look at IAME - and how many organizations seem to have joined - I can't ever...

I played tennis myself - but not at Wimbledon of course! :) Actually, ME is living death. A family member actually looks as if she's already had laid in the grave; that's not a joke, it's shocking. I agree that big numbers can only be really achieved with emotions. You name two of those that...

I like that article. If I remember correctly something like that was said about Germany, that the German government increased the gap between rich and poor and the number of poor people. What is the canary?

your speech was just incredible! Thank you

Again this mysterious "researchers'" statement: "His thoughts on GET are not shared by all, though. A statement to Newsbeat from some of the country's leading ME researchers and clinicians says: "These therapies help many people with CFS/ME by reducing symptoms, increasing what they can do, and...

Thank you for this, too. I personally think trust is an important topic. I like this from @Luther Blissett's link: That is exactly what I think. I once spoke to a psychotherapist, and we had a conflict. I told her right now she doesn't give me any reason to trust her, so I won't, and she...

Having been raised in a Christian environment, I would have understood it as "Please God, help me" or "My trust lies in God"; but I agree it can also be understood as a wish for death. I personally think it's too religious looking; if it's supposed to reach a broad audience. Interesting...

That makes me uncomfortable. It seems to me groups are increasing power that shouldn't have influence - that's just my view. I don't have the feeling they represent me. But their actions may affect me - and others. It's just a feeling...

I'm very surprised the LVS is supporting Action for ME. Does someone of the Germans know more? Edit to tag @Joh, @YaS, @MSEsperanza, @Philipp...

This may be unnecessary - but do we have to be cautious about Monaghan because of the developments in Forward-ME? I still don't know what went on there, and it's always a bad sign if politics meet intransparency (although they are nearly inseparable, haha).

@adambeyoncelowe, thank you so much! @Arnie Pye, that doesn't sound too great :( I think increasingly I shall not take it but consider the alternatives instead

That's what I thought, too: "Bugger off with your 'We're doing thousands of ENGs a year and never observed that'." There's always a first. Besides, I have found 7 examples with awful side effects. Those people were always told this can't come from the electroneurography.

I'm definitely thinking about it. I already wrote my lawyer about what's going on. But this won't "bring back" my leg. :( I have called the Independent Patient Counseling (UPD= Unabhängige Patientenberatung in Germany) and a Neurologist will call me next week. I have found three cases of people...

I have called the clinic today. They told me they have never ever heard of such a reaction before. They claim they have searched the literature worldwide (in an hour or so) and there is not one such reported case (sure they know). They say it simply cannot be possible that my pain is a...

I like it, @Allele. Thanks for doing this!