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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. Gamboa

    Beware of Aiding in the Burial of ME!

    Every time I read these sort of posts I get extremely angry. All of the people who are so intent on separating ME from CFS and not supporting all of the recent research on ME/CFS ( yes I said that! and I will say it again ME/CFS), are not helping anybody. I follow all of the research very...
  2. Gamboa

    OMF-Dr Davis research update (video!)

    Thanks for this Ben. I must have missed something at some point recently. What are the 4 potential biomarkers that he is referring to? Thanks Claire
  3. Gamboa

    Your Dream Place for an IACFS/ME Conference: Take the Poll

    Thanks Cort for posting this poll. I have been wondering where the next conference will be held and look forward to attending it, no matter where it is. As a resident of Ottawa, I would favour Boston or New York City due to proximity to home and short flight. Having said that I would be...
  4. Gamboa

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    A year or two! That is very discouraging. It is so hard to be patient when we have already waited for decades. I thought we were closer to some news, even some tidbits to keep us going. I do, of course, understand how science works and know that the study results have to be iron-clad...
  5. Gamboa

    2-day CPET test results (reveals Chronotropic incompetence)

    Hi all, I did the 2 day CPET at Ithaca with Dr Keller and, like you Dechi, have Chronotropic Incompetence. Two years later I did another 2 day CPET in Ottawa at the Ottawa Heart Institute where, once again, I had CI. I was then referred to a cardiologist due to other abnormalities and was...
  6. Gamboa

    SPECT scan results : it looks bad :-(

    Hi @Dechi . I would not be worried about this but instead happy that you are closer to a firm diagnosis of ME/CFS. I also saw Dr. Hyde and had a SPEC scan but mine was not as conclusive as yours. The low blood flow ( hypoperfusion) is more evident in your scan and is a great illustration to...
  7. Gamboa

    A unofficial update on Prof Davis and Janet Dafoe...

    I am too unwell to be able to put words together to express how I feel. Thank you just doesn't seem enough to express my extreme gratitude to everyone involved in this team effort. Claire
  8. Gamboa

    OMF (Open Medicine Foundation) 'A Year in Review'

    Thanks for this review. I do have a question regarding the release of results of the Severely Ill Big Data Study. I thought that Dr. Davis was going to release results in the weeks following the IACFSME Conference yet in this review it is mentioning a date in the summer of 2017. Apparently...
  9. Gamboa

    Realistic expectation of time frame before treatment that improves function.

    @perrier -- Dr. Davis is about to release the first set of data on his metabolomics study--any day now. He had hoped to be able to present it at the IAME/CFS conference at the end of December but there were some legal hurdles to overcome. This was anticipated to take a few more weeks. I think...
  10. Gamboa

    New Org!: ME/CFS International Alliance

    The IACFS/ME Conference is a much larger and longer conference than the annual international London conference and being the most recent had the most up to date research. A lot has happened in the last few months, especially the recent metabolomic papers that have been released. Anyone who could...
  11. Gamboa

    Comment by 'Gamboa' in 'between life and death'

    I am so sorry that you are living in the UK and having to go through this. It is awful for all of us with this dreadful disease no matter where we live in the world but England is just nuts. I don't think it will be too much longer until Esther Crawley and Wessely end up looking really stupid so...
  12. Gamboa

    The 2016 IACFS/ME International Conference--Review by Cort Johnson-Part 1

    Cort Johnson has done it again and written an excellent review of the recent 2016 IACFS/ME International Conference in Fort Lauderdale, Florida. I was there and can tell you all that it was truly a turning point in the history of our disease. We are finally getting somewhere and there is no...
  13. Gamboa

    Medpage: NIH Program Director Talks Team Work to Tackle ME-CFS

    Excellent article. Great to see this one, along with the three by Miriam Tucker that have just come out in Medscape. I know people are very upset with the NIH over so many things but at least they and we are moving in the right direction. $15 million is peanuts but is better than any...
  14. Gamboa

    New Org!: ME/CFS International Alliance

    I am fairly positive that she knows very much how much the MEGA, Pace and other British Pysch crap is viewed by the scientists, doctors and patients who attended to IAME/CFS conference. The science showing that our illness is very much a multisystemic, very real, possibly autoimmune...
  15. Gamboa

    New Org!: ME/CFS International Alliance

    Yes that is it. Then, no, I have no idea what this other alliance is. I will check with ME/FM Action Canada people. The executive should know something. Regarding Sonia Chowdhury, I had no idea who she was and just realized that I sat with her at the banquet dinner, along with the President...
  16. Gamboa

    New Org!: ME/CFS International Alliance

    Wow! Just looked at this new ME/CFS International Alliance website and was surprised to see a Canadian in the executive group. David Mann of FM-CFS Canada. I recently looked up FM-CFS Canada when I was searching to see what advocacy and help groups we had in Canada and found this group but it...
  17. Gamboa

    New Org!: ME/CFS International Alliance

    I could be completely wrong about this but when I was at the recent IAME/CFS conference in Florida there was a woman from Holland? or Norway? ( brain fog) who was talking about a new European alliance of various advocacy groups. It was composed of 8 to 10 groups from various countries and is...
  18. Gamboa

    The Undetectable Infection

    Hello. I am very late to this discussion and have only read the first few pages and the last few so forgive me if what I say has already been said. I worked for 15 years in a microbiology laboratory at a major hospital in Canada and am finding a lot of what has been discussed here is somewhat...
  19. Gamboa

    A genome association study of TRP ion channels, ACh receptors, and adrenergic receptors in ME/CFS

    I'm having trouble understanding whether homozygous AA or GG associated with ME/CFS. I checked my own results and am GG for ADRA1A rs2322333 ( 23 and me raw data).
  20. Gamboa

    Video Dr. Byron Hyde - Enterovirus theory?

    I have been a patient of Dr.Hyde's for the last few years and was thoroughly investigated by him. And I do mean thoroughly! This was was really only possible, however, since I live in Ottawa, where he lives part of the time, and I am an Ontario resident, so the tests he ordered were available...
  21. Gamboa

    Is Anyone Here Going to the IACFS/ME Conference in October?

    Hello all, I was wondering how many of you ( if any) are planning to attend the IACFS/ME Conference in Fort Lauderdale this October. I went to the last two and really enjoyed them and had planned to go to this one but have not bought my ticket yet. I am suddenly having second thoughts about...
  22. Gamboa

    Come say Hi (if you can) to OMF's Linda Tannenbaum and Prof. Ron Davis at IACFS 2016 CONFERENCE

    Thank you Ben. I and my husband are attending the conference and might attend the session the day before. Claire from Ottawa Canada
  23. Gamboa

    How would you describe your brain fog?

    When I have brain fog I feel like I have been drugged or poisoned. My head feels heavy and full inside as if the pressure is too high. It isn't quite a headache but is close. I feel as if there isn't enough oxygen, blood and or glucose reaching my brain and everything slows down. I can't make...
  24. Gamboa

    Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

    Well said, Bob. Now is the time to group together and move forward, not split even further apart. The momentum is with us. Let's use it !
  25. Gamboa

    Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

    I thought this briefing was fantastic!! I think we need to group together and not split even further apart. For those who feel that the IOM report does not represent their interests, we have to start somewhere. The more money and recognition that can be raised for ME, CFS or SEID research the...
  26. Gamboa

    Anyone Know Their VO2Max?

    Thanks MeSci. :thumbsup: That's a great article and explains things very well ( much better than me :confused:)
  27. Gamboa

    Discovery on microbiome bacteria that decrease inflammation and regulate immune response

    I could do that but would end up in the same boat as you: " not sure what to make of this". I'm not sure at this point if knowing the identity of my gut flora will help if we don't know what they do or don't do. I will definitely do it once some of the upcoming studies, such as Dr. Lipkin's, are...
  28. Gamboa

    Anyone Know Their VO2Max?

    You obviously understand more about this than most people. I'm not so good with this so was happy to leave it up to the experts. I know that there is more to the testing such as proving that the test was done with maximal effort, converting it to METS etc. I got a six page report from Dr...
  29. Gamboa

    Discovery on microbiome bacteria that decrease inflammation and regulate immune response

    Very interesting. I took antibiotics for acne from age 13 to 25 and then again periodically for another 5 years. I always wonder what that did to my gut flora.