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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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Search results

  1. Guido den Broeder

    Interview: Ian Lipkin’s Million Dollar Appeal for Microbiome Study

    KDM presents a brand new cause of ME every year, each time discarding his old one. Last year it was Lyme, now it is the flu. Sorry, but no. There is no reason to abandon all other research because KDM has found another small anomaly, not even in ME patients. The erroneous immune response in ME...
  2. Guido den Broeder

    ME Global Chronicle: impressive new newsletter

    Egan and Wijbenga share the view that CFS = ME.
  3. Guido den Broeder

    dutch me association interviews with dr. Speight, KDL, dr. Visser

    Cardiologist Frans Visser is a member of our ME guideline working group. You can find a longer presentation on our website, see http://www.mevereniging.nl/landelijke-me-informatiedag-2013 (different patient organization). His main interest regarding ME is in bloodflow abnormalities.
  4. Guido den Broeder

    CFS Internationally

    For The Netherlands, go here: www.mevereniging.nl :)
  5. Guido den Broeder

    Martine McCutcheon opens up about the seven years she suffered from cfs and depression

    ME does not do that to your skin. Typically, it will rain comments on how well you look, and people think you're younger.
  6. Guido den Broeder

    Wikipedia entry on CFS

    Mr. Sciencewatcher can also be found at times on the unmonitored CoCure forum, where he uses his real name, promotes his book and attacks other posters for disagreeing with his ridiculous views.
  7. Guido den Broeder

    KDM and sleep

    By sleeping on your stomach, you might avoid the need to take anti-epileptic drugs. The frequent waking problems are caused by low oxygen saturation, and short of sleeping in a sitting position, a prone position (sleeping on the stomach) is the best way to keep oxygen saturation up. Also...
  8. Guido den Broeder

    All plausible causes of ME

    They can, but I don't think that's happening in ME. Our immune system is fighting a real intruder, only it does so ineffectively because our B-cells have been repogrammed, as it were.
  9. Guido den Broeder

    KDM and sleep

    I haven't seen any evidence for what DeMeirleir suggests, neither from science nor from ME patient experience. There is, however, quite a bit of evidence for an alternative explanation, namely that the day-and-night cycle in ME is disturbed. That is a hormone problem, not an immune system...
  10. Guido den Broeder

    BMJ: US Editors Choice: Getting clinical guidelines right

    Interesting article. If I count right,, the Dutch guideline on CFS (CBO, 2013) scores 8 out of 8 red flags. But evidence-based guidelines, defined as is, remain primitive no matter what. We need model-based guidelines.
  11. Guido den Broeder

    Martine McCutcheon opens up about the seven years she suffered from cfs and depression

    At the time of My Fair Lady she was diagnosed with hepatitis c, glandular fever and throat infections. She then supposedly recovered by following an exercise regime and something called the 'blood type diet'.
  12. Guido den Broeder

    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    Reduced blood volume has been confirmed by cardiologist dr. Frans Visser in Amsterdam, still unpublished though.
  13. Guido den Broeder

    ‘CFS patients feel increasingly isolated’ FemaleFirst.co.uk (Talkhealth Survey)

    The findings from our survey in The Netherlands are similar. Obviously these results are according to our expectations, but it is important to collect and post them regularly so that the rest of the world hears of it.
  14. Guido den Broeder

    ME patient found dead of heart failure and malnutrition

    My doctor ran bloodtests, and found my kidneys on the brink of failing back in April already and other signs of malnutrition. I also lost 8 kg within a couple of weeks. He is concerned, but there is little he can do. I am dependent on the foodbank for lack of money. Other people just comment on...
  15. Guido den Broeder

    ME patient found dead of heart failure and malnutrition

    Malnourishment in ME can easily go unnoticed because you may still have a normal weight.
  16. Guido den Broeder

    Dental Health: Yet One More Challenge For Those With ME/CFS

    Getting a cavity filled is a nightmare for me (and my kind and understanding dentist). Not because of the drilling - that I can take - but because I can't open my mouth wide enough for longer than a fraction of a second. The pain and cramps from trying are worse than anything else I know.
  17. Guido den Broeder

    Wikipedia entry on CFS

    If you want to experience the MMORPG named Wikipedia first-hand, try to create an article on ME. Warning: don't use your real name for the defamation you'll receive stays at the top of Google searches forever.
  18. Guido den Broeder

    Deborah Waroff interviews Dr. Dan Peterson: ME/CFS Alert, Episode 48

    As you keep attacking a position that I do not have, I won't respond anymore to your posts.
  19. Guido den Broeder

    Deborah Waroff interviews Dr. Dan Peterson: ME/CFS Alert, Episode 48

    You insist on a choice that need not be made. It is possible to apply the agreed on terminoloy, i.e. ME, and yet not discard the evidence from individual outbreaks. Akureyri and Tapanui also have evidence specific to those outbreaks, for instance.
  20. Guido den Broeder

    Deborah Waroff interviews Dr. Dan Peterson: ME/CFS Alert, Episode 48

    Immunization, but not vaccination. Big mistake, but it remains an outbreak of ME.
  21. Guido den Broeder

    Deborah Waroff interviews Dr. Dan Peterson: ME/CFS Alert, Episode 48

    Funny then that Gilliam does not mention this. The first attempt to even develop a polio vaccine began in 1936, AFAIK, i.e. 2 years AFTER the Los Angeles outbreak.
  22. Guido den Broeder

    Reliability and validity of Short Form 36 Version 2 to measure health perceptions in [CFS]

    A rather weird study. This is by no means a validation. As you say, the questions are about the last four weeks. But no participant will have answered with that in mind. Nor can the conclusions be generalized. The study says nothing about the validity and reliability of the SF36 for measuring...
  23. Guido den Broeder

    DHHS - soliciting for study on diagnostic criteria for ME/CFS

    With a starting point of 'ME/CFS', instead of ME, I can see only trouble ahead.
  24. Guido den Broeder

    Deborah Waroff interviews Dr. Dan Peterson: ME/CFS Alert, Episode 48

    Somehow they keep forgetting Los Angeles 1934. Great interview though. :) We are aiming to set up a center of excellence here in Rotterdam, but that requires some other major steps first. We are so far behind.
  25. Guido den Broeder

    New Medical Director of WPI--Kenny De Meirleir M.D., Ph.D.

    Formerly know as Kutapressin. Not quite on par with targeted antivirals as Valganciclovir, but still something we can't get in The Netherlands. So there is a lot of traffic of Dutch patients to Belgium. I remember asking him to accept Dutch patients way back in 2000 or so. Basically, I figure...
  26. Guido den Broeder

    New Medical Director of WPI--Kenny De Meirleir M.D., Ph.D.

    I've had contact with DML's Belgian practice yesterday. He will be at the WPI for only a limited number of days a year. That means we lowlanders won't need to invade Nevada after all. ;) http://www.mevereniging.nl/prof-demeirleir-zee-wpi
  27. Guido den Broeder

    New Medical Director of WPI--Kenny De Meirleir M.D., Ph.D.

    Will DeMeirleir leave Belgium behind entirely? He has announced that several times in the recent past.
  28. Guido den Broeder

    ‘Academic freedom’ overrides individual concerns in PACE Trial tribunal

    You will never win this, or any issue related to ME, in court. They are part of the system. It is hard to find even a single judge without relations to the medical establishment.
  29. Guido den Broeder

    Valganciclovir research paper - Jose Montoya & Andreas Kogelnik

    According to Lerner, it takes 5 to 7 years of treatment to see the final result. Also, they need a more accurate patient selection to draw conclusions about the effect on ME.