Dies ist notwendig, da bestimmte Informationen laut Heilmittelwerbegesetz nicht frei zugänglich sein dürfen. Außerdem sind sie zum Teil lizenzrechtlich geschützt.'
(Google translates it as: 'This is necessary because certain information may not be freely accessible according to the Remedy Advertising Act. In addition, they are partly protected by licensing law.')
I understood this in the first place. There are ways to solve that "problem". I won't list them here.
I don't feel it is right due to several reasons:
I don't merely trust for good and well-known reasons. ME has a certain past, and patient organisations played a role in it, not always positive.
I and we are the sufferers. If there is stuff that could have the potential to help us, we should know that, too. We should know who could help us. It shouldn't be kept secret. It should be made public. I and we will most probably never meet those handful doctors that inform themselves about ME. Why should a possible treatment remain exclusive to some persons?
I also fear that those doctors will have to be paid privately, since the insurance won't pay for ME treatment in general or since those doctors are private.
I don't see a problem with self-responsibility - we need that if we want anything to happen and to change. I don't believe in the therapeutic state.
It shouldn't be the goal of a patient organization to make information (and possibly treatment) accessible only for a solvent crowd - and most of us aren't very solvent.
Before I recommend something, I want to know what I recommend.
I guess that Prof. Scheibenbogen counseled. Why doesn't she publish her knowledge, e.g. in a book or paper or whatever? This is something I am sad about also when it comes to other ME doctors.
We deserve to know if there is something that can help us - or if misinformation is shared. (I don't say it is, because I cannot know.)
Ok, I can talk to my GP and ask him to share the info with me. That's maybe how I'll learn about it.
And last, I think this is something the members should have decided on, too, as should be the case with any patient organization. A society/club/whatever shouldn't be like a party that I once elected and then they do what they want.
If a public list of those doctors who accessed the portal and/or who attended a workshop by Prof. Scheibenbogen were published, and if those doctors made public what they learned, e.g. on their homepage, that would change the picture a bit because it would be very helpful to all of us.
Maybe the DG plans a patients' portal, too (maybe it needs to be members only), where you could find the same information only without dosages or whatever is deemed as critical. Maybe they plan a public treatment info that will contain even less information due to legal reasons. But sadly I don't know. If so, I apologize.
Still, I see the potential plusses. This is the right direction. And I have a lot of respect for establishing this portal.