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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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Search results

  1. slayadragon

    Review Site - Netflix Series "Afflicted"

    Here is a review site for the new Netflix series "Afflicted," which focuses on seven chronic illness patients. https://afflictedreviews.com/ There are 51 reviews on the site so far, and I think they are interesting reading. https://afflictedreviews.com/reviews/
  2. slayadragon

    The Real ME: A Stock Photography Resource for the Media

    That is a good collection of photographs that you put together, Sasha.
  3. slayadragon

    Fluge & Mella's pre-trial study highlights life-changing potential of rituximab

    :) In truth, in terms of science, a non-placebo-controlled drug trial is no more credible than a large number of anecdotal reports. Both are preliminary and only hint at something interesting, rather than providing any proof. I am not suggesting that the reports from mold avoiders of...
  4. slayadragon

    Fluge & Mella's pre-trial study highlights life-changing potential of rituximab

    Lisa Petrison, Ph.D. Ph.D., Marketing/Social Psychology, 1998 Kellogg School of Management Northwestern University FWIW: Dr. Leonard Jason's Ph.D. also is in social psychology.
  5. slayadragon

    Fluge & Mella's pre-trial study highlights life-changing potential of rituximab

    I'm concerned about the use of this drug in this disease. Here is an interesting finding from the medical school of my own institution, for instance. http://www.northwestern.edu/newscenter/stories/2009/05/bennett.html The initial results of the mold avoidance survey that I am doing...
  6. slayadragon

    Dave Asprey's New Movie "Moldy"

    This new movie about toxic mold (which I am in) by Dave Asprey is available for free viewing until June 13. "Moldy" is about an hour long and is well worth watching. Providing an email address is required in order to watch the film for free. https://moldymovie.com/index
  7. slayadragon

    Could there be mold issues?

    Yes, it certainly is the case that the ERMI is not 100% accurate and may miss severe mold problems. I do continue to believe that it is more accurate than any of the other commercial testing that is available, however. Air testing routinely does not pick up on what seems the worst kind of mold...
  8. slayadragon

    Survey deadline today (March 1st)

    I am the developer of this survey. Some people are being asked only about positive elements, and some people are being asked only about negative elements. Some people are being asked about both. The direct link above is incorrect. Here is the correct link...
  9. slayadragon

    MEAdvocacy.org Update and a Call for Continued Support

    If you believe the name is an "acceptable placeholder," then that would seem to suggest that you do not think it is a bad name and you also do not think it is a good name. Otherwise you would be saying so. Therefore, if I were in your position, I would be stating that I thought it was a...
  10. slayadragon

    Which version of Ramsay's Disease is better?

    I think that as chief medical officer in the UK in the 1980's and early 1990's, Acheson should have done more to shut down Wessely in terms of burying this disease. So I do not think he deserves to have the disease named after him. I think Melvin Ramsay's Disease, shortened to Ramsay's Disease...
  11. slayadragon

    What Should This Disease Be Officially Called?

    When I wrote my blog on the IOM report, here is a list of alternative names that I sort of made up off the top of my head. But if anyone likes any of them, they could be included. >So perhaps we should be considering something like Ramsay’s Disease. Or BCP – Bell Cheney Peterson Disease. Or...
  12. slayadragon

    What Should This Disease Be Officially Called?

    To start out with, I've heard "Myalgic Encephalopathy" suggested recently. Should that be on the list?
  13. slayadragon

    What Should This Disease Be Officially Called?

    As background, I'm writing a survey which will be distributed widely within the community. (My Ph.D. is in marketing and I have a lot of experience with survey design. And am working with others on the project.) The wording will be something like below. Suggestions for improvements welcome...
  14. slayadragon

    What Should This Disease Be Officially Called?

    In this blog, Professor Leonard Jason proposes that rather than just adopting SEID, the government should take into consideration patient input when deciding on what name to use. http://blog.oup.com/2015/02/disease-name-chronic-fatigue-syndrome-me/ Obviously, many patients favor the name ME...
  15. slayadragon

    Concerns about IOM diagnostic criteria including those with mental illnesses?

    I think the concern is that some physicians are not going to evaluate whether patients have PEM rigorously enough, and thus will diagnose people who don't actually have PEM as having it and therefore as having "this disease" (whatever the name ends up being. Certainly that is possible. But...
  16. slayadragon

    IOM’s Redefinition of ME Invites Over-Diagnosis and Risks Inclusion of Primary Psychiatric Disorders

    I think it is clear what they are saying here is that even though having depression (including depression that preceded getting "ME/CFS") does not preclude the diagnosis of ME, it is possible for physicians to find whether patients have "ME/CFS" rather than or in addition to depression by using...
  17. slayadragon

    IOM’s Redefinition of ME Invites Over-Diagnosis and Risks Inclusion of Primary Psychiatric Disorders

    No, it states specifically that the depression can pre-date the ME for years, which would suggest that it should not be considered "secondary" to the ME.
  18. slayadragon

    IOM’s Redefinition of ME Invites Over-Diagnosis and Risks Inclusion of Primary Psychiatric Disorders

    Following is a quotation from the Canadian Consensus Criteria. >Co-morbid Entities: Fibromyalgia Syndrome (FMS), Myofascial Pain Syndrome (MPS), Temporomandibular Joint Syndrome (TMJ), Irritable Bowel Syndrome (IBS), Interstitial Cystitis, Irritable Bladder Syndrome, Raynaud’s Phenomenon...
  19. slayadragon

    Any Experience with Dr. Brewer Nystatin + EDTA Intranasal?

    I used an extremely similar version of this many years ago via Dr. Dale Guyer in Indianapolis. I was living in a moldy house at the time and was quite sick. I found it a little helpful. My understanding is that those two doctors know one another, so I suspect that that is where Dr. Brewer got...
  20. slayadragon

    P2P Protest Flyer

    Here is just the corrected version.
  21. slayadragon

    P2P Protest Flyer

    I was very displeased with the flyer created by NIH about their upcoming P2P workshop. It trivialized the disease and told the same sort of untruths that the government has been getting away with for years. So I am happy to be able to share this response, created by Laura Vitale.
  22. slayadragon

    A Mold Avoidance Sabbatical in Moab, Utah

    Moab (a spectacularly beautiful desert town in eastern Utah) has long been one of my favorite feel-good locations, and many other individuals with chronic neuroimmune disease (including ME/CFS, chronic Lyme, fibromyalgia and toxic mold illness) have agreed that they felt great there. This past...
  23. slayadragon

    Could there be mold issues?

    Here is information on the ERMI. Shoemaker recommends the Mycometrics test much more than other companies' versions. http://www.survivingmold.com/diagnosis/ermi-testing
  24. slayadragon

    Could there be mold issues?

    I have had other people who already are practicing mold avoidance in one form or the others tell me that their results on the free test tend to correspond with how they are feeling and/or how much exposure they have gotten recently. I think that may be true for me as well. Whether it should be...
  25. slayadragon

    ME/CFS Media Coverage

    A page of information with links to the most important media stories about ME/CFS that everyone interested in the disease should look at. http://paradigmchange.me/mecfs-media/
  26. slayadragon

    Could there be mold issues?

    Rarely do people who are living in homes that are very bad in terms of toxic mold believe that the homes smell like mold. In some cases there actually is no mold smell. In others, people's sense of smell has been damaged (Stachybotrys toxins have been shown to have the ability to cause brain...
  27. slayadragon

    Diagnosing Toxic Mold Illness Issues

    Information on toxic mold illness diagnosis. http://paradigmchange.me/diagnosis/
  28. slayadragon

    Long Term Effects Of Mold VOC exposure?

    From the hundreds of cases that I have seen, people who become sick with toxic mold illness invariably become hyperreactive to small amounts of mold toxins. (This needs to be studied!) Many people also become hyperreactive to chemicals, foods and other substances as well. One possibility with...
  29. slayadragon

    How to Tell If I'm Sensitive to Mold?

    If you look on the first page of the Paradigm Change website, you can find links to some information about mold avoidance. www.paradigmchange.me
  30. slayadragon

    Neurological Effects of Stachybotrys Toxin

    Hmm, that is the one that I have been using in other places and this is the first complaint. Maybe try it again? Or you could try the following, which is the first page of the blog site: www.paradigmchange.me/wp