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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. O

    New to forum,, would like advice

    You should look at the laundry list of Citalopram side-effects because they sound like ME. I would look at the side-effects of your meds before settling for an ME diagnosis.
  2. O

    What Should Phoenix Rising Tell the IOM Committee?

    The point needs to be made that GWS (and FM and IBS) is/are not synonymous with or interchangeable with CFS, that CFS is not "medically unexplained", and that there is a large body of CFS research where specific biomarkers have been found.
  3. O

    What Should Phoenix Rising Tell the IOM Committee?

    I don't know if this has already posted, but if not it's imperative that it's addressed. GWS has been redefined as "chronic multisystem illness" and the VA has decided that CFS (along with FM & IBS) is related to GWS. This is detailed on their page...
  4. O

    Sept 10: CDC 'conference call' including Unger and Lipkin

    hey Daffodil, I still think that the HERV hypothesis is very plausible, even though Huber didn't find anything in her HHV-6/7 study. And yeah I agree that antivirals could be treating an HERV, or improving immune function b/c they can have immune modulating properties. But it's weird that...
  5. O

    Sept 10: CDC 'conference call' including Unger and Lipkin

    I agree with Daffodil about the tissue testing. That's a no-brainer, and it seems really irresponsible to imply that there are no pathogens without testing tissue, particularly since they've been found in tissue by other researchers. His poop fixation is making me very nervous, because what if...
  6. O

    A dream: to sit in a chair for her birthday

    I totally agree. She deserves to know what's wrong with her at the very least. She could have anything, from prion disease (which can be conveniently hidden as "ME"), to Lyme, to a viral infection. Many of these illnesses are treatable. If her family cannot afford testing then they may be...
  7. O

    Daily Mail: The fog of fatigue I lived in for 16 years has lifted at last...

    Andy Partridge had a "nervous breakdown" where he collapsed onstage while performing with XTC in France in 1982 and has not been able to tour since then because of his issues. It's interesting that this was not mentioned, and that his partner has embraced a psych explanation for her "illness".
  8. O

    i miss work, would love to work again..anyone work and sick? how do you do it?

    I have a few suggestions for you. Have you considered starting a shop on ebay or Etsy and selling your garage sale finds on there? There is also a company that offers short-term workers for whatever clients need-like it could as small as needing someone to put together an Ikea chair for their...
  9. O

    How did XMRV enter humans?/Vaccines and XMRV

    list of vaccines hi August I posted a list over here: http://forums.aboutmecfs.org/showthread.php?8879-Xenotropic-MLV-s-can-infect-many-mammals-and-also-(wild)-mice&p=141427#post141427 ETA some interesting Kaprowski (Elaine DeFreitas' boss) info (originally on wiki, now at...
  10. O

    New Neighbor Smokes

    air purifier recommendation My neighbors on both sides smoke, so am in the exact same situation. I use this air purifier: Honeywell HHT-011 Compact Air Purifier with Permanent HEPA Filter It's amazingly good, inexpensive (around $40 new) plus you don't have to buy filters for it. Mine's...
  11. O

    Xenotropic MLV's can infect many mammals and also (wild) mice

    vaccines Just want to throw this out there-came across an immunization timeline-vaccines have been in existence since the late 1700s, so who knows what they were contaminated with. One of the two Yellow Fever vaccines was extracted from mouse brain tissue (and was not recommended for use after...
  12. O

    A Doctor's Wake-Up Call on "Awareness" Day

    God's Love We Deliver Maybe they could help out Dr. Yes when he's outside. http://www.glwd.org/about_services.html They deliver food 2x/weekday to people who are seriously ill in NYC area. They also do client advocacy and referrals for housing etc. They began as an AIDS charity...
  13. O

    Is it time to take the pledge to NOT donate blood?

    update on blood supply At the May 10th CFSAC meeting there is supposed to be an update from Jerry Holmberg-I'd wait until then to see what he has to say. I totally understand your anger srmny. There has been a bloodmobile conveniently parked in my city for about a month. I *could* have given...
  14. O

    Spare a thought for the Psyche Lobby

    agreed For those who haven't seen it, there is a very disturbing American Experience episode on lobotomies that you can watch online: http://www.pbs.org/wgbh/americanexperience/films/lobotomist/ "In the 1940s Dr. Walter Freeman gained fame for perfecting the lobotomy, then hailed as...
  15. O

    Summary: Drugs tested against XMRV to date (in vitro)

    lactic acidosis Sorry to hear about your missus subtr4ct! Don't know how to do links on here, but if you go to nyp.org and do a search on Dikoma Shungu you'll get all of their links for his study info. In light of this research it made me concerned about tenofovir when I saw that lactic...
  16. O

    Summary: Drugs tested against XMRV to date (in vitro)

    tenofovir Apparently it can cause build-up of lactic acid in the body. Dr. Shungu is finding in his studies that people w/ CFS already have abnormally high levels of lactate.
  17. O

    rotavirus vaccine contaminated with pig virus

    Fauci I totally agree w/ you guys and wonder if the virochip is being used to identify the viruses. Something interesting about this article is that it quotes Dr. Anthony Fauci, and per Osler's Web Fauci was totally clueless about CFS. He supported the view that CFS is a psych disorder...
  18. O

    rotavirus vaccine contaminated with pig virus

    Rotarix rotavirus vaccine contaminated, officials say By Tom Watkins, CNN March 22, 2010 4:22 p.m. EDT About 1 million children in the United States and about 30 million worldwide have gotten Rotarix vaccine, the FDA says. STORY HIGHLIGHTS Doctors have been advised to suspend use of...
  19. O

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

    shoes Why not shoes? Pandora did a fundraiser w/ the theme "Walk in my shoes" so could potentially link up with them. Get a pair of shoes from everyone with ME/CFS and line them up-then donate them to charity afterwards. The message is: there are a lot of sick people, too sick to be here...
  20. O

    The Fight is on...Imperial College XMRV Study

    am assuming that Wessely does think that CFS is "physical" This is the definition of somatoforrm disorder (from wiki-too tired to dig for anything scholarly): "Somatoform disorder (also known as Briquet's syndrome) is a mental disorder characterized by physical symptoms that mimic physical...
  21. O

    The Fight is on...Imperial College XMRV Study

    "New Scientist" has a history with Wessely-many will remember this from March: http://www.newscientist.com/article/mg20126997.000-mind-over-body.html
  22. O

    The Fight is on...Imperial College XMRV Study

    they didn't use Canadian definition only Fukuda. So they're not replicating the WPI study-they're not using the same patient population.
  23. O

    Dr. Oz and Dr. Teitelbaum (continued)

    Shineola It's everywhere: Psychology Today-you can comment on this one http://www.psychologytoday.com/blog/complementary-medicine/200912/got-cfs-dr-oz-tackles-the-xmrv-virus And The Dr. Oz Show website: http://www.doctoroz.com/blog/jacob-teitelbaum-md/my-perspective-xmrv-virus
  24. O

    News of replication of WPI XMRV study...

    rnase l genetic variation & XMRV The connection between the mutation & xmrv in prostate cancer was recently disproven, ie everyone is at risk for XMRV, not just those with the mutation: http://www.sciencedaily.com/releases/2009/09/090907162310.htm...