Daffodil
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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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DeMeirleir's Seminar Videos
- Thread starter Daffodil
- Start date
Guido den Broeder
Senior Member
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- Rotterdam, The Netherlands
Knowing that they with two other groups (MS and OI) received almost € 600.000 for creating these videos, the results are not stellar. Just the one doctor's view - Belgian, too, rather than Dutch, not really suitable for the less informed viewer, and kind of a mess with knowledge and speculation much intertwined.
It is an entirely different setup from the proposal for this project that I presented on behalf of the original ME/CVS Vereniging (since succeeded by the ME Vereniging Nederland) in 2010/11. The project was intended as one of our three corner stones to bring ME awareness on par with that of other chronic diseases in The Netherlands, the other stones being a ME guideline (in development) and a patient panel (now running for over a year already). Without synergy and consistency it is just one of many similar isolated efforts.
Sadly, after we had done all the preparatory work, the Dutch Minister of Health granted the subsidy to mr. Wijbenga's group instead. What one foreign doctor is saying on Youtube will not threaten the CBT/GET-only policy in The Netherlands, after all.
It is an entirely different setup from the proposal for this project that I presented on behalf of the original ME/CVS Vereniging (since succeeded by the ME Vereniging Nederland) in 2010/11. The project was intended as one of our three corner stones to bring ME awareness on par with that of other chronic diseases in The Netherlands, the other stones being a ME guideline (in development) and a patient panel (now running for over a year already). Without synergy and consistency it is just one of many similar isolated efforts.
Sadly, after we had done all the preparatory work, the Dutch Minister of Health granted the subsidy to mr. Wijbenga's group instead. What one foreign doctor is saying on Youtube will not threaten the CBT/GET-only policy in The Netherlands, after all.
I found the vids interesting, and I was pleased de Meirleir said that the psychological approach wasn't right. But if this was meant as a full scale awareness campaign- then no, it falls well short of that. I am sorry all your hard work was filched and trampled by politics Guido.
Sushi
Moderation Resource Albuquerque
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Hi Shell,
Those videos are part of a series--short talks on a number of relevant symptom-treatment aspects. The series also includes talks by other doctors. So far only a few of them have been English-subtitled, but there will be more.
Best,
Sushi