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I don't think it is simplifying. Saying things as they are is the prerequisite for change. Saying things as they are is difficult because it will always create turmoil. Those who are affected will fight back because they view it as an attack if things are spoken out clearly. Of course, it's not...

There was a time - not long ago - where the divide psychosomatic/biomedical was clear, even in the population, but today psycho-stuff - esp. psychosomatic - is so en vogue. Everything is psychosomatic today, even things that aren't because psyche and body are one. (Which is not the same as...

But they prove there IS orthostatic intolerance, as 2-day-CPETS can show there are abnormalities. This is not irrelevant when it comes to credibility in general (pwME are viewed as hypochondriacs with a somatoform disorder, or simulants - depending on what serves better - they need to prove...

This is quite interesting @mango, thank you! (And nice to see you again. :) )

This treatment has an autoimmune background. If I understood and remember correctly, they selected patients with high values in the CellTrend panel, i.e. autoantibodies to certain muscarinergic and adrenergic receptors.

It doesn't have to be a "mysterious something" (although it could); something they don't see or understand (because, e.g., the nano-needle is not made for it), like different signals for example, or an altered signal which would be needed for activation of enzymes in the mitichondria. Or a...

In a time where profit maximization is everything, the best argument in my view is to point out that something isn't cost-efficient. The health system is classified as an industry, namely as part of services industries. Principles known from production, e.g. production lines, are translated to...

It's really easy. (But now that I give IGG s.c. at home, everything with needles seems easier. :) ) It's less than 1€ for one phial à 1.5mg hydroxocobalamin. The adenosyl- and methylcobalamin versions are more expensive here. Isn't there B12 by Pascoe for instance in the US?

You certainly considered it, but still I thought I'd ask: You could give B12 injections s.c. yourself?

They may be considered not to be of sound mind by some, but legally there needs to be a process of incapacitation. Unless somebody is lawfully incapacitated he is deemed legally competent, i.e. "of sound mind". The UN says nobody, if sick, disabled, psychologically ill or whatever (altogether...

:laugh: Plans. That means nothing. What about getting concrete?!

I had an EMG with and without electricity. I found it painful, the one with electricity very painful. I had severe muscle soreness directly after it. I will never again allow ENG, EMG or anything with electricity. It only triggered pain that stayed for good. I think a nerve/muscle MRI and...

I'm "honest", so I don't want to pretend I'm ok. I already was accused of faking to be sick because of this.

I found this interesting: Is this correct, does anyone know?

Why? Why wouldn't it be correct for a subset? Or for a subset of symptoms? Could the direction be interesting? Why not? I agree though that nitrosative stress maybe is not the answer alone. (Is there any evidence of nitrosative stress/hypernitrosylation in ME or elsewhere?) They are not...

Yes, I agree with you. From my own experience, though, you only really understand if you know chronic pain. Before that, compassion and empathy will help, although they're rare. I heard a story about a woman who broke her leg; it was nearly an open fracture. Due to adrenaline she didn't feel...

I find this quite interesting. I always wondered how it can be that the assessor disregarded all the medical reports, just like that, as if it wasn't time- and energy- and money-consuming for all parties, and instead already knew it's psychosomatic. I already felt it must be institutional...

Pain catastrophizing...Pain IS a catastrophe! I don't mean mild pain that can be easily ignored. I mean PAIN. Pain is draining. And if it's chronic, if you don't have pain meds or they don't work or whatever, it is only natural to get desperate over time. Because whenever you're awake, it's...

And this, in turn, reminds me if the movie "Bob Roberts", which was good but a pain to watch. (Because "Barts" or "Bobs" shouldn't win...But actually they do...)

I agree with you @Samuel. I think that calling something unethical "unethical" is the right step in the right direction. But we need much more as you're pointing out.