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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. NK17

    The End ME/CFS Project: History Taking Root

    I also had the immense pleasure of meeting and talking with Dr. Davis and Linda Tannenbaum and can confirm that not only they will go the extra mile for all PwME on a scientific and fundraising level, but that they also deeply understand the true devastating nature of the disease and the...
  2. NK17

    Lyme conference Dr H. Dr B. etc - a must read

    Just wanted to thank you @Hanna for posting in this thread about Prof. Christian Perronne. I'm fluent in French and from what I'm finding about him and by him, he is indeed a very serious doctor/researcher/clinician. There is a magnificent and very exhaustive presentation given by Prof...
  3. NK17

    Interview with Dr. De Meirleir about ME/CFS/SEID and Lyme Oct, 2014

    @SOC couldn't agree more with you!
  4. NK17

    Interview with Dr. De Meirleir about ME/CFS/SEID and Lyme Oct, 2014

    @voner Can you tell us how big was the study? And did they test blood and/or spinal fluid? Which kind of labs/tests did they use?
  5. NK17

    Interview with Dr. De Meirleir about ME/CFS/SEID and Lyme Oct, 2014

    @Jonathan Edwards do you know if Prof. Mella and Dr. Fluge have ever tested their ME patients and/or study participants for Borrelia and co-infections? It would be really interesting to know in light of all these exchanges here on PR and anecdotals reports of Lyme, Bartonella, Babesia...
  6. NK17

    ME Global Chronicle #10

    Very easy to confuse them and get confused ;). In any case they both are true stellar scientists and only good things can come out of their research.
  7. NK17

    ME Global Chronicle #10

    Thank you :)
  8. NK17

    ME Global Chronicle #10

    Maybe we should point the "error" out to the nice people/patients that put together TGC (Global Chronicle), so that they can make a correction or at least say that at the moment there is no official figure of funding for ME previously known as CFS. What do you think? I also wish that, as in...
  9. NK17

    ME Global Chronicle #10

    Hundreds of millions of $??!?! I doubt that is a correct figure, but wish I was wrong and as all of us PwME, I really hope this will become reality and would do anything in my power - very little :( - to see this happen! Having watched the latest video/webinar from the Dutch group, in which...
  10. NK17

    Debates on ME in Dutch Parliament May 14; & Lyme May 15

    @paolo and @Valentijn IGeneX Western Blot labs results states under LIMITATION: (…) Some viral antibodies cross-react with 31, 41, 83-93 kDa I think that something has been going on between some Herpes viruses, gram negative bacteria and possibly HERV (endogenous retroviruses, those which are...
  11. NK17

    Interview with Dr. De Meirleir about ME/CFS/SEID and Lyme Oct, 2014

    Good question @Nielk! One to which I'd like to have an answer ... I personally think that there are many roads that can lead to ME and it is becoming more clear that Lyme Disease and other associated co-infections might be part of the picture. Mind you I'm not saying that all PwME have...
  12. NK17

    Interview with Dr. De Meirleir about ME/CFS/SEID and Lyme Oct, 2014

    Yes Dr. Ka/ Dr. #2 @OMI. IGeneX was the lab used for testing. Not sure how to report the results, but several important bands are ++. Now getting tested for Bartonella with Galaxy Lab NC.
  13. NK17

    Interview with Dr. De Meirleir about ME/CFS/SEID and Lyme Oct, 2014

    I finally listened to the radio pod cast today, what can I say since I've just been diagnosed by my ME specialist with Lyme ... The overlapping of symptoms and immune abnormalities are definitely there. I wish we could get some answers sooner than the 4 or 5 years that KDM talks about. In the...
  14. NK17

    Interview with Dr. De Meirleir about ME/CFS/SEID and Lyme Oct, 2014

    And this is exactly what just happened to me ... I guess from now on I'll refer to my diseases states as LyME, who needs SEID?!
  15. NK17

    CFI Spinal Fluid study from Lipkin and Hornig is out.

    TY
  16. NK17

    CFI Spinal Fluid study from Lipkin and Hornig is out.

    I really appreciate your help @duncan TY
  17. NK17

    My Experience With Dr. Kaufman at the Open Medicine Institute

    Another patient of Dr. Kaufman here. I've seen him a month ago and can confirm the importance of SIBO breath test. He wants me to get tested again and I'm in the process of setting up an appointment with my old gastroenterologist who had treated me with abx (Xifaxan + Flagyl) back in '12...
  18. NK17

    CFI Spinal Fluid study from Lipkin and Hornig is out.

    @duncan and @MeSci can you please help me locate where in this thread you/we started talking about Lyme in regards/connection to the Hornig and Lipkin CSF study and the rationale? I'm in a big crash and have to conserve the little energy I have for other daily living activities. Thanks
  19. NK17

    Has anyone had akathisia (severe muscle agitation) from Valcyte?

    Yes Valcyte. I'd like to add a disclaimer here, actually more than one. Until we get solid real biomedical studies we can't really compare patient's response/non response to meds. Each of us has a very different medical history and there are many paths, or shall I say, encounters with...
  20. NK17

    Avril Lavigne diagnosed with Lyme disease

    @Misfit Toy awhh you made me laugh so much and I'm still laying in bed hurting all over after a night of sleep ... WTF is absolutely a keeper as @duncan well said!
  21. NK17

    CFI Spinal Fluid study from Lipkin and Hornig is out.

    Don't want to hijack this thread, but I need to mention and suggest to @Kati and @alex3619 Prof. Gavin Giovannoni's MS blog: www.multiple-sclerosis-research.blogspot.com for all of the most insightful news on everything, really every aspect of MS and its impact on patients' lives and for a...
  22. NK17

    CFI Spinal Fluid study from Lipkin and Hornig is out.

    Yes! Yes!! Yes!!! I should be sleeping, instead I'm crying ..
  23. NK17

    Patent filing for the use of nitric oxide with or without B-cell depletion in CFS

    Wow @deleder2k once again you are our greatest informant and Prof. Mella and Dr. Fluge our true heroes! They're really looking and working hard to find the treasure trove of treatments that might work for us.
  24. NK17

    Has anyone had akathisia (severe muscle agitation) from Valcyte?

    So sorry to hear about this bad turn @Gingergrrl. I hope that the akathisia has abated today as well as all other nasty symptoms. I've been on VGC for a little over a year and I was fortunate enough not to experience any side effects but did not rip any benefit at all and have recently...
  25. NK17

    My Experience With Dr. Kaufman at the Open Medicine Institute

    I'm so deeply happy for your improvements@jeff_w and I'd like to thank you for: 1. Getting up to open the door for me at OMI 2. For the compliment which, by the way, is exactly what I think about you, even before meeting you :) and 3. For the precious informations and updates. I've been...
  26. NK17

    Allergic reaction today- almost went to the ER!!!

    @Gingergrrl I'm just reading your post now. I really hope you're doing better today. Sending you all my best thoughts.
  27. NK17

    Chronic Fatigue Syndrome: Right Name, Real Treatments

    He is a desperate jerk.
  28. NK17

    Attack on Lipkin/Hornig and Fluge in a medical magazine

    @deleder2 I would not waste any time in commenting and engaging with Dr. Mads (!). I agree with Prof. Edwards that he should be left in his hole of ignorance. Soon real science done by real scientists will prove him wrong.
  29. NK17

    Attack on Lipkin/Hornig and Fluge in a medical magazine

    If it's a belief you can't back it up ;)
  30. NK17

    In Memory of Bevan Jeffery (beaverfury)

    "There must be music in paradise." from Bevan's blog RIP Bevan Jeffery