Sushi
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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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And mr. Wijbenga agrees.
But we, the sick, are not looking for comfort. It's treatment we're after.
Regards,
Guido den Broeder
Chair of the Dutch ME Association
Perhaps, but this is 2013. Patients want to get well, not pampered.
The situation in the Netherlands is that the government supports all kinds of foundations and associations where non-patients seek to 'comfort' us. They generally don't give patients a say in the matter and do not know what ME really is.
But we, the ME patients, who simply want proper diagnostics and medicine, get no subsidies.
It's a difference between day and night...I don't think there's a real conflict here between 'comfort' and 'treatment' in any meaningful sense.
I don’t believe Sasha is saying that they are the same. My interpretation of her statement is that they are NOT mutually exclusive. There is a place for both.I don't think there's a real conflict here between 'comfort' and 'treatment' in any meaningful sense.
It's a difference between day and night...
That's all very well, but you are eating the cakedough where I prefer the cake.
I'm sorry that being a fan prevents you from understanding the issue that I raised. That happens a lot in ME land, also with certain doctors that almost seem to have groupies rather than patients.
dr. De Meirleir now seems to claim that ME=Lyme).
Yes, I know that you thought so. But I was talking about something else: the missed opportunity to, with the same effort and dedication, instead create something that actually has an impact on our cause.
This was the purpose of the project Science for Patients as designed by Lotte and me. It was part of a concerted effort to raise awareness, in synergy with other projects like the production of a guideline and collecting data. By stealing our subsidy, mr. Wijbenga set us back for over a year. Sure, he made some videos, but they are a random walk, have no co-ordinated message, and hence no impact.