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  1. TrixieStix

    FDA outlines potential crackdown on Clinicaltrials.gov offenders

    "Based on new draft guidance it seems that the FDA and NIH are teaming up in a big new way to punish those who are non-compliant with the Clinicaltrials.gov-related regulations and laws, including potentially with large fines. What do sponsors of specific listings do that’s so bad? There are a...
  2. TrixieStix

    Placebo effect & “the fade” after stem cell clinic shots

    Placebo effect & “the fade” after stem cell clinic shots "Sometimes when I talk about possible placebo effects with fans of stem cell clinics I feel like placebo becomes akin to a bad word in the discussion. However, any kind of medical procedure can cause placebo effects in people. We’re all...
  3. TrixieStix

    OMF update - Research on red blood cell deformability.

    Interesting. I have a congenital blood disease called "Hereditary Spherocytosis" which causes my red blood cells to be misshapen. "Hereditary Spherocytosis is an abnormality of red blood cells. The disorder is caused by mutations in genes relating to membrane proteins that allow for the red...
  4. TrixieStix

    Patient–physician gender concordance and increased mortality among female heart attack patients, 2018, Brad N. Greenwood et al.

    Merged thread "Overall, the team found that female physicians outperformed their male colleagues, and their patients were, on the whole, more likely to live. That’s consistent with other studies: For example, it’s what Ashish Jha from the Harvard T. H. Chan School of Public Health found in...
  5. TrixieStix

    ICD-11 Fibromyalgia - MG30.01 Chronic widespread pain

    "The 2010 diagnostic criteria was updated in 2011 and most recently, in 2016. The 2010 fibromyalgia diagnostic criteria removed the 18 tender points examination standard, changed the fibromyalgia definition, gave widespread pain numerical measures via a widespread pain index (WPI), incorporated...
  6. TrixieStix

    ICD-11 Fibromyalgia - MG30.01 Chronic widespread pain

    I spent the past 4 years almost totally debilitated from pain, fatigue & neurological symptoms. Every specialist (various rheumatologists & neurologists) I saw brushed my symptoms off as "just" Fibromyalgia. and told me to exercise. I feel a lot of anger towards those doctors. I need to make...
  7. TrixieStix

    Chronic fatigue an under-recognised symptom of debilitating endometriosis, study finds

    When I was diagnosed (via surgery) with Endometriosis 3 and a half years ago I was hopeful that I had found the cause of my debilitating fatigue. I was so bummed when my fatigue didn't improve after my major and thorough Endometriosis excision surgery. Thankfully the surgery improved a number of...
  8. TrixieStix

    People With Autoimmune Disorders More Likely To Have Psychosis, Research Shows

    Interesting. Relapsing Polychondritis affects males and females equally. Perhaps that is more evidence pointing to it being a T-cell driven disease?
  9. TrixieStix

    I was diagnosed with a rare autoimmune disease called "Relapsing Polychondritis"

    @Jonathan Edwards I appreciate you giving me your take on it. It's mostly all gooblygock to me, and what you've said about these "findings" matches up with the overall consensus that the etiology of RP remains unknown. My gut feeling was that the listed "findings" don't really add up to much...
  10. TrixieStix

    I was diagnosed with a rare autoimmune disease called "Relapsing Polychondritis"

    more from the same online resource... "Relapsing polychondritis (RP) is characterized by widespread, potentially destructive, inflammatory, and degenerative lesions. Ear cartilage is classically affected, but RP may involve cartilage and biochemically and immunologically related connective...
  11. TrixieStix

    The New Yorker: The Neuroscience of Pain

    Great article. Really interesting stuff. I sure hope the volunteers who participate in these experiments (especially the one outlined in the excerpt below) are well compensated. Eeek! "Inflatable rectal balloons mimic the distinctive pain caused by damage to internal organs."
  12. TrixieStix

    I was diagnosed with a rare autoimmune disease called "Relapsing Polychondritis"

    @Jonathan Edwards as always I very much appreciate your scientific analysis and input. Same also goes to everyone else who has commented & "liked" my posts :) I found this information online that says it is "current" & "updated" and my rheumy is one of the listed editors. I'm curious if after...
  13. TrixieStix

    NYT: Why the Medical Research Grant System Could Be Costing Us Great Ideas (June 18, 2018)

    "Funding is harder to find in general, and the current approach favors low-risk research and proposals by older scientists...." https://mobile.nytimes.com/2018/06/18/upshot/why-the-medical-research-grant-system-could-be-costing-us-great-ideas.html
  14. TrixieStix

    I was diagnosed with a rare autoimmune disease called "Relapsing Polychondritis"

    I am a week away from hitting the 4 month mark since beginning treatment for RP. I am currently being treated with.... - 10mg Prednisone daily -1,000mg of Calcium citrate w/500mg of Magnesium (per NIH recommendations to help counter bone loss caused by the prednisone) - 400mg Plaquenil daily...
  15. TrixieStix

    OMF/Ron Davis Research Update May 2018

    I'd be interested in undergoing the test if available in future. To see what result is like in someone such as myself who met the criteria for ME and whose ME diagnosis has turned out to have been a misdiagnosis. I still have the ME-like & PEM-like symptoms, very low Natural Killer Cell...
  16. TrixieStix

    Migraine treatments

    I imagine those who have VERY chronic treatment resistant migraines will be more than willing to take the risk of the unknown long-term risks, and will jump at the chance to try this medication. There are ME patients who are willing to try treatments for which the risks are not completely...
  17. TrixieStix

    Migraine treatments

    Great news! Hopefully this proves to be the major breakthru that many neurologists think it is and that the people who need it are able to access it. I forsee insurance making it a difficult drug to get covered given the high cost.
  18. TrixieStix

    What you should know about stem cells, from promising research to dubious uses (April 30, Washington Post)

    https://www.washingtonpost.com/national/health-science/what-you-should-know-about-stem-cells-from-promising-research-to-dubious-uses/2018/04/29/430aa6ce-3460-11e8-8bdd-cdb33a5eef83_story.html?utm_term=.70bb297cfb65 "Stem cell research is one of science’s most promising fields. Scientists...
  19. TrixieStix

    I was diagnosed with a rare autoimmune disease called "Relapsing Polychondritis"

    @Gingergrrl The only improvement I've experienced is that which I noted last month (resulting from the Prednisone)... "It has made the pain caused by the nasal chondritis much more tolerable, and it also has me feeling less malaised (fatigue is still the same though)." Unfortunately the dose...
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