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My thoughts, @Philipp, as you might guess :) I am certain things can be done in that direction (although my lawyer meant, concerning Degam, she doesn't see a possibility), as I mused on the other thread. Do you have ideas about fundraising? Legal steps are costly, and I can't do it with my...

You're right, @Invisible Woman, I had other people in mind, e.g. protecting families who are too afraid.

I regularly have crashs (PEM?) after colds.

Ah, yes, the swiss one is more hostile. The German one...well...doesn't surprise me at all. No action there, people seem to be happy with how it is. What???? Maybe that's the core problem? That Germans with CFS do think CBT and GET are helpful? And that they don't see a change is needed? I was...

I know that forum, too, as you know :) I invest my energy here, it's a much nicer place. I am not surprised though. There once was a time when a hot discussion would have started, see an older thread about the previos guideline. But today, there's a certain agenda/ideology (alternative...

I hope more will follow and leave fatigatio, and give their money, voice and energy to other organizations who have proved to advocate for people with ME. I sometimes think fatigatio might be a part of the problem since they transport the message "Everything's fine in Germany" - oh, reminds me...

Maybe it's time to say with self-confidence it's ok to stand up for one's goals, and that that by itself is not militant but determined. Which, in everyday life, always seems to be desirable. It's a just a thought...I wondered why "they" can say anything, and we accept that game and try to...

I read some parts in the report, and it is very disrespectful. It sounds a little like "Piss off, you worms! We are the most perfect know-it-alls in this universe, if we say it is, it is".

They use PACE: Ref. 273

284. Price JR, Couper J. Cognitive behaviour therapy for adults with chronic fatigue syndrome. Cochrane Database Syst Rev. 2000;(2):CD001027. 285. Prins JB, Bleijenberg G, Bazelmans E, Elving LD, de Boo TM, Severens JL, et al. Cognitive behaviour therapy for chronic fatigue syndrome: a...

I wanted to check the references in more detail, but not today. I found 13 Wessely papers. Edit: This time they cited PACE.

Yeah, that was a good one :rolleyes:

That was my impression, too. It is not acceptable.

I would have to check my documents, but I slightly remember that the FEV value was important. I think it was slightly decreased, and there was another test, and I was told I have asthma (or more accurate: hyper-reactive bronchial system, a pre-level of asthma). At that time I really had trouble...

For those who have that problem - do you have suggestions for treatment? It seems I have developped POTS (or whatever name there is for > 30bpm after standing a few minutes) although on good days I don't seem to have the problem. I hope.

Yes. :( If there was an international ranking, Germany would take the last position.

Well said! I had absolutely the same thoughts about her July-joke.

I won't make a statement regarding fatigatio; last time someone critisized them, they threatened to sew them. No comment on that. Shame! I'm disgusted. And what's that last part about not putting them in one pot with others - WTF?! Why, oh why does this organisation have members? Oh sorry...

Maybe someday they'll be surprised!

It is horrendous, unbearable! :mad: oh, I am so angry, I would like to....:emoji_right_facing_fist: