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How aware are the supposed international partners of this consortium of the problems? Can they apply pressure?

On top of someone with the right biomedical background, they have to have the humility to listen to patients and have faith in their expertise and input.

The questionnaire is badly designed. Best if people not waste their precious energy on this. I had to give up fairly early in. I just couldn't answer the question about year of illness onset and there was no option to explain. Yet I felt it was important that I had important information to...