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I think one reason Germany and France are behind Scandinavia is or was the language barrier. The degree of psychologization of illnesses is bad but I don't know if it's worse than in other countries?

Great achievement, many thanks to Evelien van den Brink!

I like this article in big parts and it's great that it is published by the Ärzteblatt Saxony. this part is a bit irretating: "Two studies from Norway demonstrated the efficacy of the B cell-depleting antibody rituximab in more than half of the patients [11]. The results of the recently...

"I rarely get adrenaline surges, and when I do they mask my symptoms temporarily." It's the same with me. She doesn't say that she was feeling more ill at the thought of hiking: "So every time I had thought “I’d like to go hiking in the mountains but it always makes me so unwell,” my adrenal...

off topic/ fun fact: this trial once got funding by the EU https://www.ncbi.nlm.nih.gov/pubmed/18277062 :banghead: if I remember correctly 300 000 DM 150 000 € . This post has been copied to a new thread. Subsequent posts about this study have been moved there.

This post has been copied from a petitions thread; five following posts have been moved from that thread. off topic/ fun fact: this trial once got funding by the EU https://www.ncbi.nlm.nih.gov/pubmed/18277062 :banghead: if I remember correctly 300 000 DM 150 000 € .

I agree and I am scared that severe ME patients could become much worse because of this operation and the effort to travel this far.

old thread: S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire https://www.s4me.info/threads/s4me-submission-to-the-public-review-on-common-data-elements-for-me-cfs-problems-with-the-chalder-fatigue-questionnaire.2065/

There was a controversial doctor at this time in North Rhine Westphalia who offered expensive tests and unproven treatments for ME. This probably didn't help the cause. Nevertheless it's awful what the Ärztekammer wrote.

I guess several weeks in a rehab clinic can be much worse than GET where you can rest at home.

We don't have "real" GET in Germany (this one year therapy by a physiotherapist). We have psychosomatic rehab clinics for depression and all sorts of illnesses which are thought to have a psychological component or you can go to a psychotherapist who will tell you to do more or just your GP...

https://www.s4me.info/threads/rituximab-and-placebo-response.9704/ (discussion of this thread mostly about the open trial)

I didn't listen to the programme. Based on your description I share your concerns. There will be patients who will go to "Lyme doctors" abroud because of this. They will spend a lot of money and energy and take the risks of treatments which are not proven. (I was diagnosed with chronic Lyme and...

and they still refer to "boom and bust" even they couldn't find such a behaviour at the magenta-trial

Karina was a competent adult, she wasn't a threat to herself or others, she wasn't neglected In this case it doesn't even seem important which diagnosis she had, there was absolutely no justification to forcebly remove her from her home It is outrageous what happened to her and it seems so very...

I took a lot of risky medication prescribed by "Lyme experts" included a malaria medication (Hydroxychloroquine) :( I really wouldn't do this again. You take the risks without the proven chance to get better. My two "Lyme doctors" were normal doctors (no privat ones), very nice people who...

I thought private patients would tend to justify the high costs. The 2 anecdotes of people I remember who got the costs covered were not better. I am puzzled by the open phase 2 trial, too. I don't think it is a good example to help our case. It's to easy to wrongly interpret it as placebo...

I wonder why the anecdots of privat patients were nearly all negativ, only small improvements or even worsening. I think in these settings the expectation to improve must be as high as in the studies and it was very expensive for them, so you would think they would exaggerate small improvents...