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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. S

    A CFS model demonstrates mechanical allodynia and muscular hyperalgesia via spinal microglial activ.

    Does anyone have access to the full text of this study? Thanks.
  2. S

    NYT: Tuller: "Fallout from Fatigue Syndrome Retraction" and Science Times Podcast

    I thought it was a really good article and podcast - informed and digestible for NYT readers, giving a real sense that this is a serious disease. From the podcast questions and answers, you realize how hard of a task it is for someone who is informed about the complexities of the political...
  3. S

    Disease names in different countries: CFS, ME, ME/CFS, other?

    With Japanese, mansei (chronic) is a common word, as is hirou (fatigue) and the word for syndrome, and japan being the overworked society that it is (a lot of people think they are burned out and tired all the time), mansei hirou (chronic fatigue) pretty much gives a nearly identical impression...
  4. S

    Disease names in different countries: CFS, ME, ME/CFS, other?

    Thanks for the suggestion Purple, I have added it to my original post. Nielk I agree (with both the disappointment and the dream).
  5. S

    Disease names in different countries: CFS, ME, ME/CFS, other?

    I am curious about what names are being used in countries other than the US for the disease, for example, UK, Canada, Norway, Denmark, Sweden, France, Germany, Spain, Italy, Czech Republic, Australia, New Zealand, India, China, Korea, Brazil, Argentina, any other countries. If you know, can...
  6. S

    trazodone --> ambien?

    I took Ambien and trazodone together, with no noticeable side effects and pretty consistent sleep (around 7 hours, plus another hour or so of shallow sleep) for almost a year. After a while though, it started wearing off at 5-6 hours and that's just not enough sleep, even if it's medicated ME...
  7. S

    CDC scheduling conference to discuss changing case definition (said at CFSAC)

    Another point is: how long is this going to take? As important as it is that the case definition be at least as accurate and restrictive as the ME ICC, it would be unacceptable if "data driven" means that this could take years, when the data they need already exists. They could make such a...
  8. S

    Which immune tests to get?

    I agree with both "save your money" and "do it if you can for future reference." I've had NK cell function test 3 times in my 3 plus years sick, and each time it's been abysmally low, regardless of relative improvement or worsening of my overall condition. It is a piece of data I have that...
  9. S

    Vote before 4 May to win WPI up to $500,000 - Round 1 of Chase Contest

    Dolphin, you are correct. The Chase contest is a Facebook application like any other, and you have to hit the button to let the application access your basic info. I can't remember the details, but I remember reading them last year and not seeing anything bad (and I'm a stickler for...
  10. S

    Bob & Courtney Miller question President Obama on CFS research/ Reno Town Hall today!

    Way to go indeed - what an encounter! Kudos to the Ms. Miller who were ready to present the question in such a concise matter like that. That is the kind of thing we as patients need to work on, I think: given a brief meeting, or 10 minutes, or 10 seconds - being ready to PRESENT the...
  11. S

    Japanese call for XMRV research (severe ME

    Aruschima, thanks for noticing the video (I posted the same one on a different thread a few day ago, but I'm glad it's making its way around). August59, that is a good suggestion. LaurelW - do you have a Mac by any chance? If you do, since it is a Windows video, all you need to do is...
  12. S

    English version of Japanese news segment on ME/CFS

    NHK (the Japanese equivalent of BBC) aired a brief news segment on ME/CFS late last month, focusing on the advocacy efforts of a severe Japanese ME patient. An English version prepared by NHK World is now available online for a week starting today (please note the link will not work after end...
  13. S

    Will the CAA support a name change to ME/CFS?

    Good news about the committee recommending the ME/CFS name (I missed that part). I agree ANYTHING is better than CFS which people (even the experts/good guys) often shorten to "chronic fatigue." I thought it was great that the NIH guy taking over for Eleonor Hanna)/new head of the...
  14. S

    Fact Checking for CFSAC Testimony

    I think in addition to the NIH $5 million that it apparently gave out in grants as indicated on the NIH chart, CDC separately had a budget of $4 or $5 million to conduct its own "CFS" "research" "program". I've seen a source for the number somewhere, but unable to find it right now (sorry).
  15. S

    SEPTEMBER 17 -- NEXT Friday -- Deadline to send your CFSconcerns to the US government

    I think e-mail is the safest bet at this point given that the deadline is getting close (and no need for postage or trip to the mailbox/post office!). Monday is already 9/13 and the deadline is Friday 9/17. You can write your letter in Word and attach it to an email (or just write in the...
  16. S

    Pacific Fatigue Lab disability testing

    Thank you for sharing your informative and interesting report, and good luck with your appeal!
  17. S

    http://www.cfidsreport.com By Craig Maupin

    I liked the piece too. Both because it assumes we are going to get well and it presents yet another, non-obvious but profound consequence of loss resulting from this disease. I hadn't gone to the site in a while - I'm glad I found it again. Thanks muffin for posting.
  18. S

    Article: Dr. Peterson Update

    Just wanted to say a big thanks for sharing your experience and insights about the latest from Dr. Peterson.
  19. S

    CDC and NIH Funding

    I think emphasizing the ridiculously small amount of funding in proportion to the prevalence and disability is critical, and I agree that it would be ideal to express that elegantly using numbers in one sentence, without having to refer to context/comparison with other diseases with respect to...
  20. S

    CDC crimes - what do patients want?

    I agree that CDC's actions and inactions with respect to ME/CFS rise to the level of immoral, if not outright illegal (not dismissing the possibility that outright illegal activity could be discovered with proper investigation), conduct. In response to "what do ME/CFS patients want?" I want...
  21. S

    CFSAC Nominations Due September 15th

    I remember there was talk of extensions of some members for the sake of continuity at the last meeting because the last rotation brought in so many newbies. I agree with your reading of the charter provision, but maybe "including any extensions" modifies expiration date instead of reappointment...
  22. S

    XMRV Awareness Video

    Great video, caledonia! Concise, factually tight, images and text powerful in their simplicity, and leaves one curious to learn more. Thank you for your work!
  23. S

    XMRV Advertising

    I checked out the website to his clinic early on in my illness, and the place struck me as more of a "chronic fatigue" (versus ME/CFS) place and I decided against trying the place because the advertised success story testimonials on the website by patients claiming they felt better after...
  24. S

    Markers for CFS/ME?

    I think abnormally low NK cell function is pretty widely accepted as showing up in almost all patients, as Dr. Peterson has mentioned in interviews (sorry no source, just from memory). I like the idea of "NK cell function plus a, b, and/or c." I don't think the Pacific Fatigue Lab repeat...
  25. S

    Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Populat

    I think the very fact that the CDC is spending money studying so-called "personality disorders" at all in CFS in 2010 is a problem. One would think they would be past that by now, and that the money would be spent on research that can lead to discoveries that can lead to non-psychological...
  26. S

    Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Populat

    Needless to say (?) I agree with this.
  27. S

    Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Populat

    (bold mine) Not to mention health and disability insurers (who use just this type of testing and reasoning to deny benefits to seriously disabled patients) who will eat this RQBS up, legislators who make federal research funding decisions for ME/CFS, judges who make disability decisions, and...
  28. S

    Article: "Evil Eye" PR Forum Member's Novel Debuts

    Many congratulations, Veronica! What an accomplishment. The book sounds fascinating, and it is going on my reading list. I traveled extensively and had 'sojourns' (studying or working abroad for a year or less) in a few different countries before I got sick. I always wanted to go to...
  29. S

    Inspiring History of the Canadian Consensus Definitions of ME/CFS and FMS

    Thanks Sing, this really was inspiring...I guess I never thought about how the CCD came to be. The sheer amount of coordination and determined effort that it took to bring together all the collective expertise and make it happen is inspiring indeed. If only the same magnitude of focus and...
  30. S

    My New CFS Video--CFS Patients Address the CDC

    This is so beautifully done, Dreambirdie. I loved it. THANK YOU!!! The tremendous amount of effort that you put into this is evident from the quality of the video itself. And it's equally evident that you invested so much of yourself into this for the benefit of the entire ME/CFS...