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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. Lisette

    Ehlers Danlos Type 3 Hypermobility - Do you have it?

    Hi, " If you are not double jointed or hyper-extendy then I cannot see how you can be described as having hypermobility or EDS3, Lisette. " My doctors at the time considered that I might have EDS, because they were trying to figure out why my joints were getting increasingly unstable. But...
  2. Lisette

    Ehlers Danlos Type 3 Hypermobility - Do you have it?

    Hi, Eeyore I have wondered the same thing about hypermobility causality-- which came first? In my case they seemed to come together. I am not double-jointed, bendy, hyper-extendy, etc. No mitral valve prolapse (I had a heart scan for another issue) nor stretchy skin. When I first heard...
  3. Lisette

    Interpreting HLA-DR test results

    Gingergrrl I am so sorry you are going through this. The same thing happened to me back in 2008, and I had two elementary aged children at home at the time. They are grown now, and both are in college, so hey, we all made it through!! :-) I understand exactly what you are dealing with. Your...
  4. Lisette

    Are Parkinson's and ME related?

    http://www.ncbi.nlm.nih.gov/pubmed/19929732 Hi, This article discusses cyanobacteria, and how the illnesses of Parkinson's, ALS and Alzheimer's were seemingly related in the diets of people in Guam (and another island, I believe) who ate a certain ground up bean product. This was discussed in...
  5. Lisette

    Negative XMRV CFS study with Ila Singh's name on it (University of Utah)

    >> I hope I don't have a retrovirus, but if I do, well then shoot, I'll learn to cope with that too. I think you stated yourself well, Evangelina. I, too, would not like to have XMRV or any of its mousey-mafioso family members, for the sake of my own family. >>I believe miracles will...
  6. Lisette

    PLEASE HELP - Do Probiotics Methylate Mercury and other heavy metals?

    Hi, Danny, I don't frequent this site, so you may not remember me, unless you remember me from Prohealth, which I doubt. I just moved to the Seattle area from Tucson this past June. I really did very well where I am, in spite of an incredible amount of physical and mental stress from the move...
  7. Lisette

    Article: The Ampligen Supremacy

    Hi, Kelvin I had my own "Bourne" moment a few years ago in the form of a Mark Twain passage. I forget now which supplement or treatment had suddenly crumpled in on its promises. I didn't want to believe it, but as I was reading "Tom Sawyer" to my daughter one day, that's when I decided, "no...
  8. Lisette

    Sock It To ME: a community public art project to raise awareness and funds.

    Oh, that Forget-Me-Not flower idea has my eyes and nose all stinging with trying not to cry. That is the perfect symbol for a plea. When people see us, that is usually on a day when we are doing better and then they "Forget" that we are so ill. We are so often out of sight, out of mind. The name...
  9. Lisette

    Low cortisol but XMRV activated via mold and Lyme toxins

    I forgot to mention that I came across a guy's blog that I think is/was called "The Mold Missionary". His doctor has passed away, I believe. He lives in Alaska now, or at least did at the the time I was reading it. Erik Johnson is familiar with that doctor, too, I think. There might be a yahoo...
  10. Lisette

    Low cortisol but XMRV activated via mold and Lyme toxins

    Hi, Mark You can find anything you need to know about mold, mycotoxins, reactivity, sensitivity and avoidance by talking with Slayadragon on this forum. Erik Johnson of I&I is also on here, but he doesn't post very often, I don't think. Khaly Castle's blog "CFS Untied" is also very...
  11. Lisette

    welcome + thoughts on how to get started

    Hello, and thank you for the invitation. I think I will see what I can imagine myself doing that would make the most sense from someone with no real "creds". I don't want to end up being in the Kurt scenario of people wondering, "who is this Lisette person, and how is this her self-appointed...
  12. Lisette

    Volunteers to review CAA literature and website??

    This is why I asked for an interview with a CAA volunteer. I would want to know exactly how my help would be used, and the likelihood that it would used at all. Thankfully, JSpotila said that an interview with her (or someone like her) was forthcoming. I think knowing what the obstacles...
  13. Lisette

    Wessely psychologises Chemical warfare

    Koan, I had the same thought, except not so wonderfully succinct and fitting. I imagined him as a toady trying to get as close to wearing those gold braids as he could for one shining moment. It gives a whole new image of "suck up"-- I think that military general might have suction marks on his...
  14. Lisette

    Comment by 'Lisette' in 'Similarities of chronic fatigue to AIDS'

    I'm sorry, I don't get the logic. Please set me straight. M.E. is AIDS that was in a body that defeated the "AIDS virus" which was not HIV to begin with, must have been a different virus because there is no HIV present to cause the AIDS, but because it resembles AIDS in severe cases, it must...
    • Lisette
    • Blog entry comment
  15. Lisette

    Time for the Big Talk. How's the CAA doing?

    Jennie-- I think that the intersection with advocacy and what I understand the best of all is the topic of CBT/BET. This is where I can't stay silent. CBT/GET and why it is not only ineffective, physiological but also psychologically harmful for anyone. I don't care if someone thinks that it...
  16. Lisette

    Time for the Big Talk. How's the CAA doing?

    Because I said negative things about the CAA, I also want to say that I am really impressed with Jennie's willingness to read these threads and respond. When I think of the CAA, I don't think of patient/volunteers like her who are on the board and doing all they can. Especially not when I feel...
  17. Lisette

    Time for the Big Talk. How's the CAA doing?

    I used to have a subscription to the CAA-- then I let it lapse because I didn't feel they were talking about anything as relevant as what was being discussed on PH and now here. It was the advocates like MEZombie and others that opened my eyes to what goes on behind the scenes-- not the CAA. In...
  18. Lisette

    Article: Curing My Tunnel Vision - by Christina Gombar

    Thank you for writing about this aspect of our illness. I also enjoyed visiting your website.Lisette
  19. Lisette

    Buddhism & CFS

    Thanks for the tip on where my post went-- And those that were by some other people-- but I see why they ended up getting removed. Sorta sad. Thanks for all the nice responses. I think I'll choose to stay off of the other thread for now. I was learning so much from other people-- I hope...
  20. Lisette

    Buddhism & CFS

    Sigh of relief Instead of having a nervous breakdown from the holidays with family-- I decided to pop on here. Glad I did! Koan-- the story of your mother saying, "you should get down..." had me almost weak with wanting to laugh, but holding it in lest I wake people. Oh, me, oh my-- did we...
  21. Lisette

    the psych lobby strikes again: DSM-5 v. WHO's ICD in the US

    Oops-- one more idea Jspostila had posted a link to the icd maintenance page. Sorry, I'm not yet familiar with how to do cut and paste on here. I'll figure it out. Anyway, I found the section that a chronic pain doctor had done on the strange diagnosis "Psychalgia". This is in the...
  22. Lisette

    the psych lobby strikes again: DSM-5 v. WHO's ICD in the US

    Thanks for bearing with me Because I had things happen to me that happen to ME/CFS patients, yet they occurred with another problem that was considered psychogenic, and then watched how that problem was legitimized as having somatic causes in just five years has made me ponder various...
  23. Lisette

    the psych lobby strikes again: DSM-5 v. WHO's ICD in the US

    Wow-- so many posts since mine Whoa! Didn't mean to start a ruckus! Sorry about that. But please don't cyberscold me, all the same. ;) I wasn't trying to get this off topic, honestly. I simply saw a notion at the beginning of this thread that needed to be corrected. And I saw an opportunity...
  24. Lisette

    the psych lobby strikes again: DSM-5 v. WHO's ICD in the US

    Let's not join the contemptuous I know that many people with other chronic issues-- especially chronic pain issues that are not found on x-ray or MRIs-- have had some of the same humiliating and unjust experiences that we have had with CFS. I'm one of those people.:( We think that if we had...
  25. Lisette

    Time for the Big Talk. How's the CAA doing?

    The Vacuum When the CAA is not effusive with praise for various research studies, it seems to expand the vacuum that is created by the CDC's mumbling reasons for ignoring them. In the world of science, caution is a virtue, but in the world of advocacy it is a whisper of unbelief. It feels...
  26. Lisette

    Writing for Dollars

    Poems and Fish THE FISH I caught a tremendous fish and held him beside the boat half out of water, with my hook fast in a corner of his mouth. He didn't fight. He hadn't fought at all. He hung a grunting weight, battered and venerable and homely. Here and there his brown skin...
  27. Lisette

    Scars, and neural therapy...

    I meant to add, after reading this thread, that I think that Devin Starlanyl's Fibromyalgia book was more helpful to me than any CFS book I have read. It seems to me that having pain leads you into bodywork and energy medicine and the immune system is addressed second. However, I noticed that...
  28. Lisette

    Scars, and neural therapy...

    Hi, I'm new to this group, but some of you already know me. I'm using the same name as I did over at PH, which I stopped visiting about a year ago. Dan, I can't provide any sort of answer the scar question, but when I had hurt my back severely ten years ago (which precipitated my downward...