Hi @Sundancer, I enjoy your ramblings, just too tired (ha) to post much more tonight. I live close to the Dutch boarder and am very interested in the situation in the Netherlands regarding ME. I'm unbelievably impressed by the superactive patient community in the tiny Netherlands. If I remember correctly you have about 40.000 and we have about 300.000 ME patients? And the Dutch activists organize Unrest screenings (even with David Tuller and Dr. Shepherd), Millions Missing, translate everything (even the long Davis Tuller articles) and manage to get ME in the media.
By the way the guideline tiredness named three other guidelines they relied on and one was a MUS guideline from Dutch GPs.
Exactly! I've always done activism (in other areas) and would have loved to advocate for ME if I had gotten a diagnosis earlier (and could have advocated from outside my bed). It took 14 years until I got a diagnosis, so I was excluded from this great community and felt very alone and desperate, while my life was falling apart and I didn't know why. Now I can put all the anger, frustration and sadness into productive advocacy from bed and volunteer for four groups and on my own. So yes, I agree we need to get people diagnosed to get a patient movement. And to get them diagnosed we have to get the information about ME out.
By the way the guideline tiredness named three other guidelines they relied on and one was a MUS guideline from Dutch GPs.
