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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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  1. W

    ME/CFS specialist in Germany?

    Nanou, all of those tests cost me €555.59. Lala, yes, the most common neurotransmitter test is a urine test, but I would not consider it to be a useful test. It would be really wonderful if there was a valid, reliable test for depression. I disagree with what you've said about low levels of...
  2. W

    ME/CFS specialist in Germany?

    Lala, there's no evidence that a deficit in any neurotransmitters is linked to depression. I'm not sure what neurotransmitter tests you're talking about, but if it's a blood test it will be completely useless. Neurotransmitters don't cross the blood/brain barrier easily, and if you wished to...
  3. W

    ME/CFS specialist in Germany?

    Daffodil, is that question addressed to me? If so, I'm extremely happy with how my CFS is being treated here in Munich and if you have a look at the BODI protocol, you'll see that it's very similar to what De Meirleir is advocating. I don't see how you would know that/if De Meirleir is ten years...
  4. W

    ME/CFS specialist in Germany?

    Hi Nanou, I know the feeling, of being so sick of it all. I'm 5 months in to treatment now. I said in the other thread that for a few years I was unable to work for more than 20 hours per week, but I would say that was a bit ambitious, 10 would be about right. I would say I was at 30-40pc...
  5. W

    Duloxetine/Cymbalta and ME/CFS

    I'm not off it yet...I'm currently on 3mg per day, just three weeks to go until I'm finished! LDN sounds really interesting...I'm torn between wanting to try something new as it might help me, and my wish to minimise the number of drugs I'm on. I'm feeling better, more alert, on less duloxetine...
  6. W

    Duloxetine/Cymbalta and ME/CFS

    EnduringAngel, I feel your pain. It's such an awful feeling. I would never have been able to stop cold turkey at 15mg. When I went from 30 to 20, I got brain zaps, my POTS was far worse, I was nauseous, even more weak than usual. That's all I can remember. You CAN get Yentreve in the UK, I got...
  7. W

    What to do when CFS affects your relationship?

    My partner and I have been together for 10 years now. A few weeks ago, when he was feeling really low, he said that he has thought about breaking up with me in the past, but would feel bad doing it as my illness is not my fault. I was really shocked. I don't think he was seriously thinking about...
  8. W

    Duloxetine/Cymbalta and ME/CFS

    Hi Fluffytrousers, I really feel for you. I've been on Cymbalta for almost ten years now. Most of that time I was on 60mg, but I also spent a fair amount of time on 90, 120 and even 180mg! I have horrendous side effects when I try to reduce. After two years of gradually reducing my intake, I...
  9. W

    ME/CFS specialist in Germany?

    Ah, I'm a big fan of the GanzImmun tests too! Redrachel, I'm posting about my treatment in this thread: http://forums.phoenixrising.me/index.php?threads/greetings-from-germany.20714/#post-315379 ...which I will update shortly :)
  10. W

    ME/CFS specialist in Germany?

    Yes, I didn't even have to suggest the tests! They asked me questions based on the Canadian criteria for CFS at the start of my first session, and then did the tests of my major organ systems. When my heart and lungs didn't perform so well (with no overt sign of pathology) they hypothesised that...
  11. W

    ME/CFS specialist in Germany?

    I posted this in another thread on ME/CFS in Germany, but I think it's relevant here too: I'm in Munich and I go to the Burn Out Diagnostic Institute: http://www.burn-out-muenchen.de/ Burnout is a recognised condition here, and the clinicians have a lot of experience in dealing with CFS. I've...
  12. W

    Another specialist for gut-related Cfs around Germany than KDM?

    I'm in Munich and I go to the Burn Out Diagnostic Institute: http://www.burn-out-muenchen.de/ Burnout is a recognised condition here, and the clinicians have a lot of experience in dealing with CFS. I've been seeing them for just two weeks and I'm very hopeful for the future. My ATP and...