• 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. S

    Article: Website problems due to a recent upgrade

    Somebody is working on it? Who?
  2. S

    Article: Website problems due to a recent upgrade

    Example of what mezombie might be talking about: hovering over perfectly normal buttons brings up menus. There is no apparent way to turn off those menus. For me those menus are unnecessary and unreadable. As a result, I just marked all forums read by accident. I didn't even know that...
  3. S

    Article: Website problems due to a recent upgrade

    We ahve been through this before Cort, there is a thread from the last failed upgrade that explains most of it in detail, including the fact that none of the workarounds that are usually suggested, including the ones you suggest, work. This forum is not usable for me. Thanks for...
  4. S

    Article: Website problems due to a recent upgrade

    What's New and New Posts completely useless. Cannot read titles on those pages. Cannot click on some parts. Cannot edit any posts because blog this post obscures edit post. Cannot see text in title boxes. Posting often gets apache error and takes minutes. PM often gets apache error...
  5. S

    Article: Website problems due to a recent upgrade

    An unworkable peace for me.
  6. S

    Article: Website problems due to a recent upgrade

    Can somebody please explain why the upgrade happened? There is no other forum that I can go to that has the same kind of community and information. It is disturbing that if the forum goes down, then the community loses a major resource. I am experiencing that right now. Please tell me...
  7. S

    Article: Website problems due to a recent upgrade

    Forum still unusable The forum is still very very broken for me.
  8. S

    Article: Website problems due to a recent upgrade

    Still the same problems as reported.
  9. S

    Free online training for activists / advocates

    Interesting idea, Rachel. I have long thought that we might be able to learn from advocates in other fields, whatever they are. Maybe those of us who can investigate these kinds of things can summarize the lessons for those of us who cannot.
  10. S

    Snake oil?

    Interesting. Didn't look at the raw data though. They are big supporters of beta-glucan, which I have seen little about. Any comments?
  11. S

    The CAA Pamphlet to Educate Doctors

    A resemblance to a women's magazine CAA literature, including their pamphlets for doctors, is a little like a women's magazine. To me, anyway. Lots of mainstream health advice (predominantly behavioral). Sidebars with smiling pictures of benevolent-looking doctors (offering...
  12. S

    The CAA Pamphlet to Educate Doctors

    By the way You may be worried that any increase in exercise or physical activity could make your condition worse. Be reassured research has shown that a guided, gradual exercise programme can help people who suffer from CFS/ME without causing ill effects. In the US, the word is written...
  13. S

    PatientsLikeMe (www.patientslikeme.com)

    Maybe somebody should put a link to the questionnaire thread here and vice-versa. Or perhaps just to my previous post. I cannot do so now.
  14. S

    PatientsLikeMe (www.patientslikeme.com)

    Clustering Here is an old idea I was too sick to implement and commentary on patientslikeme.com. === clustering === The idea of clustering as I propose it is that there are such things as diseases (and spectra and what might be called fields or spaces of diseases, and pathologies that...
  15. S

    Khaly's latest: CAA-XMRV: Tell Me What It Means To ME?

    Not necessary to keep up with the details, Tina. :) But advocacy is always needed.
  16. S

    PatientsLikeMe (www.patientslikeme.com)

    What is it with sex ratio and patientslikeme? http://www.patientslikeme.com/fibromyalgia-and-chronic-fatigue-syndrome/community I have not signed up or even gone beyond this one page, but 94% female in a population of about 12,000 is surprising. I like the concept of patientslikeme. Does...
  17. S

    Information on the Science CFS Cohort - Inclusion of Cancer Patients?

    So you are saying that if they developed apnea, they were basically described as recovered to a casual reader? That needs to be shouted from the rooftops. Loudly. You just contributed to my list of fallacies. Thanks.
  18. S

    Low dose Naltrexone

    Can an immune reaction cause nausea and vomiting?
  19. S

    The CAA Pamphlet to Educate Doctors

    A few questions Hi jspotila, Is the CAA contractually obligated, under a penalty large enough to materially affect it, to keep those materials on its website until the end of the contract? If not, can they be taken down now? If not, why not? If so, what is the penalty? Can you...
  20. S

    Faith Healing Discussion

    Martlet, You revealed that Cameron and flex are probably at the same location. That is a violation of the privacy of Cameron and flex. Samuel
  21. S

    Faith Healing Discussion

    Privacy It is easier for two people who happen to share an IP -- which is very common -- to post within one minute of each other than for one person to fake being two people. I have noticed that a lot of people on this forum value privacy. There are also security concerns. To me, IP...
  22. S

    Help please - need genetic map of XMRV with all the base sequences

    Fuzzy matching Alesh, I hope that your software or the GNU R libraries are capable of agrep- or other-style fuzzy matching in case there are a few nucleotide differences? Samuel
  23. S

    Faith Healing Discussion

    Kim, I don't know what to say. I am sorry to find out that you are no longer moderating. Samuel
  24. S

    XMRV vs HIV and long-term anti-retrovirals

    If you know their names, they can be searched to see if people have discussed them.
  25. S

    Free uterus, lightly used, will ship anywhere except the UK

    Wendy, Thank you for donating your organ. Please have a safe procedure. Samuel
  26. S

    Orthostatic Intolerance And The Size Of Meals.

    Anybody the opposite? I sometimes feel less bad (reduced pain, malaise, and other symptoms) after a large meal with a mixture of mostly protein, some fat, and some carbohydrates. But maybe that's because I never eat enough and I am often basically starving. Still, it seems significant and I'm...
  27. S

    XMRV CFS UK study #II

    Hi Koan, Good point. These monster threads are hard to concentrate on for many of us. Please note that the forum software allows you to say how many posts show per page. So my page numbers do not match up with yours. :) Using article numbers is more bulletproof (though maybe not if...
  28. S

    Phoenix Rising YouTube Video Thread

    Laurel, Your CFSAC testimony was superb. Samuel