• Welcome to Phoenix Rising!

    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. Kyla

    Celiac Test Done: High IGA and IGM Levels: Is This Precursor to ...

    Hi @Astrongtower yeah, that is pretty much what I was saying, although what I meant by positive tests was the gluten antibody tests - which I think you said were borderline high? sorry don't have the ability to reread whole thread. Either way symptoms + 1st degree family history should be...
  2. Kyla

    Celiac Test Done: High IGA and IGM Levels: Is This Precursor to ...

    Hi @Astrongtower sure, I'll get back to you with some links in a little bit, I wore myself out with that last post ;) Briefly for now: From interacting with other Celiac patients, and from my own experience I would strongly urge you to go through the formal testing process for a few reasons...
  3. Kyla

    Celiac Test Done: High IGA and IGM Levels: Is This Precursor to ...

    Actually the 'classic' GI symptoms are only present in about 30% of adults with a confirmed Celiac diagnosis, and no gastroenterologist will diagnose Celiac disease in adults without a positive biopsy unless their antibody levels are off the charts high . I'm harping on the details of this...
  4. Kyla

    Celiac Test Done: High IGA and IGM Levels: Is This Precursor to ...

    uh...actually the standard screening test is an IGA antibody test (unless you have an iga deficiency). https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/ If that is positive you still need a biopsy to confirm. @Astrongtower You NEED to be...
  5. Kyla

    The real story about chronic fatigue syndrome

    http://garnetnews.com/2016/10/19/real-story-chronic-fatigue-syndrome/ another great article written by Maureen Hanson. Has a comment section if you want to thank her. excerpt:
  6. Kyla

    The Apology I Owe My Patients With Fibromyalgia

    https://themighty.com/2016/10/apology-from-physician-assistant-to-fibromyalgia-patients/ Excerpt:
  7. Kyla

    The ‘Swiss Agent’: Long-forgotten research unearths new mystery about Lyme disease

    https://www.statnews.com/2016/10/12/swiss-agent-lyme-disease-mystery/ excerpt:
  8. Kyla

    NIH MOVING AT BUREAUCRATIC PACE WHILE ME/CFS METABOLOMICS FINDINGS GET HOTTER

    Summary/update From microbe discovery project http://microbediscovery.org/2016/10/12/nih-moving-at-bureaucratic-pace-while-mecfs-metabolomics-findings-get-hotter/ Excerpt:
  9. Kyla

    Index markers of chronic fatigue syndrome with dysfunction of TCA and urea cycles

    Unfortunately uses Fukuda criteria, but it will be interesting to see how this matches up with Navieux , Hansen, other metabolomics research
  10. Kyla

    Index markers of chronic fatigue syndrome with dysfunction of TCA and urea cycles

    http://www.nature.com/articles/srep34990
  11. Kyla

    A Pair of Identical Twins Discordant for ME/CFS Differ in Physiological Parameters and Gut Microbiom

    http://www.amjcaserep.com/abstract/index/idArt/900314
  12. Kyla

    Julie Rehmeyer Radio/podcast piece on PACE

    http://www.newsworks.org/index.php/thepulse/item/97724-advice-for-chronic-fatigue-sufferers-may-have-been-all-wrong
  13. Kyla

    MEGA research for M.E./CFS: White & Crawley listed as involved

    You can always ask them to unsign. description of how to do so here: https://www.change.org/p/change-org-offer-a-simple-way-to-unsign-a-petition-on-change-org/responses/10902
  14. Kyla

    Millions Are Missing: Will The World Finally Notice? - article by Maureen Hanson on Huffington Post

    http://www.huffingtonpost.com/maureen-hanson/millions-are-missing-will-the-world-finally-notice_b_12184042.html Really great article.
  15. Kyla

    Counter petition to the MEGA petition, brainstorming stage

    I'm going to put my 2 cents here, but I am not in the UK, so you can feel free to tell me to butt out if you want only UK patients' input. :) For what its worth I think it might be better strategically to frame this towards patient demands for research and then tackle the MEGA study more...
  16. Kyla

    Pain kept this young woman from eating for 5 years, and doctors didn’t know why

    https://www.washingtonpost.com/national/health-science/pain-kept-this-young-woman-from-eating-for-5-years-and-doctors-didnt-know-why/2016/09/26/399211a6-6df9-11e6-9705-23e51a2f424d_story.html#comments Another rare-disease-patient-misdiagnosed-as-psychiatric story. excerpt:
  17. Kyla

    Guardian article: ME affects four times as many women as men. Is that why we’re still disbelieved?

    yikes. the comment section is a nightmare. Hope more of us will click through and either comment or upvote the better comments.
  18. Kyla

    "What is the StopGET petition and why should you care?"

    http://limitedcapability.blogspot.co.uk/2016/09/what-is-stopget-petition-and-why-should.html excerpt:
  19. Kyla

    Chalder and colleagues: Emotional arousal in CFS

    Is this the same paper? http://forums.phoenixrising.me/index.php?threads/chronic-fatigue-patients-more-likely-to-suppress-emotions.44661/
  20. Kyla

    David Tuller: 'Trial by error continued: the real data'

    http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ excerpt: read the rest here: http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/
  21. Kyla

    Crappy article - "Gentle steps towards beating chronic fatigue"

    http://www.mayonews.ie/living/nurturing/28600-gentle-steps-towards-beating-chronic-fatigue Ugh. So this starts off with the hypometabolism finding....and somehow moves to that being "evidence" that you should eat some sugar and then do some graduated exercise. ?!? Truly bizzare
  22. Kyla

    Publication bias and the canonization of false facts

    https://arxiv.org/abs/1609.00494 or .pdf file here: http://arxiv.org/pdf/1609.00494.pdf
  23. Kyla

    Postural orthostatic tachycardia syndrome is associated with platelet storage pool deficiency

    http://journals.lww.com/md-journal/Fulltext/2016/09130/Postural_orthostatic_tachycardia_syndrome_is.46.aspx (Open access)
  24. Kyla

    Study finds association between POTS and Celiac disease (& NCGI)

    Perhaps I am finding this more significant than most because I have both POTS and Celiac disease (properly diagnosed well before ME diagnosis), but i would say it is an interesting finding (assuming it is reproducible) because Celiac disease is an autoimmune disease, and has well-established...
  25. Kyla

    Study finds association between POTS and Celiac disease (& NCGI)

    4 x the normal population rate (which is usually slightly less than 1%) is pretty significant!
  26. Kyla

    Study finds association between POTS and Celiac disease (& NCGI)

    Dysautonomia International put out this statement / summary of the study:
  27. Kyla

    Study finds association between POTS and Celiac disease (& NCGI)

    http://www.ncbi.nlm.nih.gov/pubmed/27606948
  28. Kyla

    Opposing Effects of Fasting Metabolism on Tissue Tolerance in Bacterial and Viral Inflammation

    Atlantic article here: http://www.theatlantic.com/science/archive/2016/09/glucose-inflammation/498965/ study here: http://www.cell.com/cell/fulltext/S0092-8674(16)30972-2 Some excerpts from article:
  29. Kyla

    Clinical Trials Doctors Demand Ownership Of Patients' Data

    I have an ad blocker as well, I just turned it off for that one individual page. If it is "Adblock", you just click on the icon and it brings you to a drop down, select "don't run on this page" It's annoying but a lot of sites are doing this now due to losing ad revenue.