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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Wasbeer

    ME/CFS docter Dr. Vermeulen R.C.W. suspended

    Frank, maybe a change of the topic-title is appropriate.
  2. Wasbeer

    ME/CFS docter Dr. Vermeulen R.C.W. suspended

    The accusations are quite serious and involve sexual harassment. If they are proven to be true, it would mean a big disappointment, and I sympathise with the (alleged) victims.
  3. Wasbeer

    ME/CFS docter Dr. Vermeulen R.C.W. suspended

    This is outrageous. I know the man and he is one of the few 'good' doctors we have in The Netherlands. I would love to read a motivation on his suspension.
  4. Wasbeer

    KUNR Radio - WPI interview

    Great stuff I'm listening right now and this is really a great show! It's ideal to share with people who are not completely 'up to date' with all the research. I really love these guys, it''s very empowering to listen to them. Love the thumb-hammer analogy :Retro biggrin: If you have 100...
  5. Wasbeer

    Outrageous comment by Dr John Mellors - Expert in Infecious disease & HIV/AIDS

    That is exactly what I thought and felt when I watched and read his words. Thank you for writing it down so clearly!
  6. Wasbeer

    Le Monde XMRV article

    Exactly! But a nice article that I could send to my French speaking friends.
  7. Wasbeer

    Outrageous comment by Dr John Mellors - Expert in Infecious disease & HIV/AIDS

    When I was watching the Q and A session this man really annoyed me. His tone seemed to be very biased, alomst hostile, against CFS and its sufferers. After reading this response, my irritation has turned into pity. Although we should give him credit for the inventivity of his theory, but talking...
  8. Wasbeer

    From the 1st annual XMRV conference

    How naive of the chair to assume (and close the dicussion because of his belief) that there is nobody who WANTS to find a negative XMRV result! British and Dutch studies were clearly designed to protect reputations, jobs and prestige of the psychiatric CFS lobby, and I can think of more than...
  9. Wasbeer

    CFS patients and families deliver strong message to NIH officials on Sept. 7, 2010

    Amazing to read this, surreal almost, seems like the speed is finally picking up, would have loved to be a fly on that wall.
  10. Wasbeer

    Concerned about TWiV/Virology.ws & Alan Dove - so I sent an email....

    Thanks a lot Ash. You have written exactly how I feel about the matter.
  11. Wasbeer

    XMRV, De Meirleir and Van der Meer on Dutch television tonight 8/30

    I would say the importance of n vandaag is average. It's an early night news show with some background stories. Not a great timeslot, but quite a solid reputation. My mom phoned me right after the show, and she thought it was a good item. Her opinion is more important than mine, because I'm an...
  12. Wasbeer

    http://www.cfidsreport.com By Craig Maupin

    Yes, in this context I mean being able to function, even if it's not 100%. I mean cured from from being bed- and or housebound.
  13. Wasbeer

    XMRV, De Meirleir and Van der Meer on Dutch television tonight 8/30

    The role of van der Meer and his buddy Bleijenberg in the Netherlands can be compared to that of Simon Wessely in the UK. Van der Meer and Bleijenberg 'proved' the effectiveness of CBT/GA in their notorious Lancet article. Scientificly, this was a joke. They made a mess of cohort selection and...
  14. Wasbeer

    http://www.cfidsreport.com By Craig Maupin

    I've been thinking about this a lot lately. I mean; you can't help but wonder what a future 'without' CFS would look like after all these years. It's exciting and scary at the same time, and when I think about it more, I always come to the same conclusion. Our CFS-experience won't be over when...
  15. Wasbeer

    Alan Dove responds to his XMRV/CFS/ME critics... from TWIV podcast..

    Yes, ofcourse you can ask, but I doubt if naming names will be constructive. Everybody has his own style of responding, and everybody means well. In general I can say that I don't think that reactions with an attacking or angry tone are helpful, especially when somebody like Alan (in my opinion)...
  16. Wasbeer

    Alan Dove responds to his XMRV/CFS/ME critics... from TWIV podcast..

    I agree with you completely. It is my feeling that some people have forgotten how to pick their battles, bitter as they have become by so much deception and disappointment. Understandable, but far from constructive.
  17. Wasbeer

    Alan Dove responds to his XMRV/CFS/ME critics... from TWIV podcast..

    Hi Alan, I think you're a great sport explaining yourself here in person. Ofcourse you're not the enemy, but I hope you can understand that a lot of patients feel very emotional towards these subjects, especially when the psy-word is used. I agree with you about the stigma mental illnesses...
  18. Wasbeer

    Media Coverage of Dr. Alters NIH paper, post stories here

    First articles from the Netherlands: http://www.mednet.nl/nieuws/id4374-studie-bevestigt-vondst-retrovirus-bij-cvs.html http://www.refdag.nl/achtergrond/gezondheid/virus_gevonden_in_bloed_cvs_patienten_1_498095?localLinksEnabled=false Both articles are from minor newssources, no big guns...
  19. Wasbeer

    What better way to prove causality than holding those clinical trials?

    On a bit more serious note: is there something we could or should do to show the research community that it's in their and our interest to start those trials? There are already a lot of petitions and patient intiatives going on, but neither of them is demanding for clinical trials, as far as I...
  20. Wasbeer

    What better way to prove causality than holding those clinical trials?

    It's a very good commentary, and I hope the people who wrote it will put their money where their mouth is. I really don't see any reason why we shouldn't start those trials today. What is interesting about the commentary is that most of it's authors come from France, a country with barely no...
  21. Wasbeer

    Media Coverage of Dr. Alters NIH paper, post stories here

    Nothing new in the Netherlands....yet. (I emailed all major newspapers yesterday and will try to use my friends contacts, who is a journalist)
  22. Wasbeer

    What better way to prove causality than holding those clinical trials?

    Hello everybody, I've been known to oversimplify things, so please correct me if necessary. Like all of you probably, I've been reading a lot of articles and analysis since the appearance of the Alter/Lo paper and a lot of arguments keep being repeated. One of the most read arguments is: It's...
  23. Wasbeer

    NIH/FDA XMRV Paper by Dr. Alter Out!

    Too bad that the US still doesn't cooperate with the International Court of Justice in The Hague ;-) I would like to nominate a few people for a vist to the Scheveningen Jail :-) But that's not the kind of trials I was talking about. Can't believe it that the CEO's of big Pharmaceuticals are...
  24. Wasbeer

    Dr. Alter Paper embargo ends today at 3:00pm, press conference today

    Great catch Bettine! What a day to finally see the PNAS-paper!
  25. Wasbeer

    NIH/FDA XMRV Paper by Dr. Alter Out!

    First reaction: small population numbers, but a very high percentage!
  26. Wasbeer

    Report on the WPI community open house. Aug. 21, 2010

    Originally Posted by richvank : "To Belcanto’s inquiry, Judy assured us that she is doing fine, and she still seems to have boundless energy. She said, and it was confirmed by others there, that there is a joke in their group that no one dares to give Judy a can of Red Bull, for fear of what...