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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. LJS

    Nicotine?

    I have done two 10 day treatments a few weeks apart. First time was 7mg for a few days then I had to start taking the patch off at night to sleep. The second time was 3.5mg (half of the patch blocked off with the metal foil and medical tape) for the whole 10 day course. I had to stop both...
  2. LJS

    Abilify- Stanford Clinic Patients

    I have tried to skim through the 78 pages of this thread but didn't see anyone who is having the effect I am having. I started at 0.1mg (0.1ml) yesterday and upped to 0.2mg (0.2ml) today. Both days the dose has knocked all the energy out of me, made me dizzy, and has made me very brain fogged...
  3. LJS

    Nicotine?

    I have mild to moderate ME/CFS that was sudden onset in 2008 from an infection, I am on day four of 7mg nicotine patches. It still feels like I am on a IV caffeine drip. I haven't had to nap during the day over the weekend while on patches which I used to have to do and I am waking up early...
  4. LJS

    Tracking CCI / AAI MRI & Treatment outcomes

    I received my diagnosis yesterday from Dr. Gilete. I am still working on gathering more data and finding someone local to do traction with. My illness started a few days after I got whiplash snow-tubing so it makes sense if my symptoms are tied to an issue in my neck.
  5. LJS

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Thanks for the replies. How is flexion and extension done with a supine MRI? I have had a few MRIs in the past and they always put a brace on my head to keep it from moving during the scan. Is there a chance of the upright scan picking up something the supine will miss? I guess I am confused...
  6. LJS

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    This is so fascinating. I have been slowly reading through many of the posts in this thread, it has taken days. All my symptoms came on a few days after getting whiplash and the flu in short succession. I have had CFS or a CFS like illness for 11 years now. I always thought the whiplash was...
  7. LJS

    Canary in a Coalmine - Exclusive interview and film trailer help launch Kickstarter campaign!

    I am thinking of donating, I wanted to express my one concern and am interested what the filmmakers opinion is. The film preview mentioned environmental toxins and the title suggests this narrative too. I hope the film does not focus much on the cause of this illness which is very unclear at...
  8. LJS

    Dr. Montoya valcyte clinical trial data, where to find it?

    I am looking for latest stage I or II clinical trial data from Jose Montoya group on the Valcyte trials. I could have sworn I read it awhile ago but can no longer find it. I though they released some data on the double-blind placebo-controlled studies awhile back but I can only find the 2006...
  9. LJS

    Annette responce on X Rx blog

    This was just posted in the comment section over at the X Rx blog http://treatingxmrv.blogspot.com/2011/10/no-good-deed-goes-unpunished.html?showComment=1317782063615#c5195120084018440543 I know many disagree with my views here but this statement seems something I would expect to hear form a...
  10. LJS

    Chicago Tribune: Mikovits Terminated by the Whittemore Peterson Institute

    There is already a 12 page thread discussing this: http://forums.phoenixrising.me/showthread.php?13988-Chicago-Tribune-Manipulation-alleged-in-paper-linking-virus
  11. LJS

    Chicago Tribune: Manipulation alleged in paper linking virus

    It is odd to me that many of you are attacking Trine Tsouderos instead of acknowledging the much bigger problem at hand here. Sure her articles do not show CFS in the best of light but that is what the scientific community at large thinks about CFS and patients are not helping that by making...
  12. LJS

    Chicago Tribune: Manipulation alleged in paper linking virus

    http://www.chicagotribune.com/health/chi-chronic-fatigue-syndrome-paper-10032011,0,6792877.story What I giant mess, the reputation of the whole institute is almost unrecoverable because of Mikovits actions. They should have looked into her claims well over a year ago when the red flags started...
  13. LJS

    Breaking News: WPI research program has been closed

    I am actually happy to see the WPI shut down its research effort. I think they have handled XMRV just about as poorly as they possibly could. They have reached a point of no return, no one in the science community takes them seriously, if they did make another big discovery no one would...
  14. LJS

    New Virology podcast on XMRV

    I think this episode was very good discussion. It was definitely at a higher technical level of discussion then what we are used to hearing so it may be hard to follow, I certainly had trouble at times. I think it is clear from this discussion that what the WPI, NCI, etc have found so far all...
  15. LJS

    An Open Letter to the Editors of Science

    Ahh, sorry about that, post removed
  16. LJS

    Dr. Deckoff-Jones posts about the recent papers

    I could not agree more. The statements in the post are disturbing, you know when you start a blog post like this it is not going to come off well.. What is she talking about?? This is science taking its course. If no one can find XMRV it does not mean it is a concerted effort to deny patients...
  17. LJS

    Lipkin: calls to retract paper are premature

    Lipkin has to say it is premature, he has a study to complete that is already funded by the NIH. If you read his comments on the virology blog you will see he does not have much confidence in XMRV being a real human virus.
  18. LJS

    Dr Mikovits excellent reply to Science Journal Request for Retraction of XMRV paper

    Yes, take a look at the supporting online material for the science paper published today, it is VP62. http://www.sciencemag.org/content/suppl/2011/05/31/science.1204963.DC1/1204963s.pdf
  19. LJS

    Dr Mikovits excellent reply to Science Journal Request for Retraction of XMRV paper

    I can not agree with this more. Mikovits arguments seems like a broken record at this point. All the evidence she has presented to try and prove she is not finding a contaminate in no way proves that; some in fact reinforces the idea that she is finding a contaminate. The sequences she...
  20. LJS

    Dr Singh Talks on her CFS XMRV study and the WPI's Response

    I do not think this is a valid argument, the original science paper found it in blood and the WPI continues to say they can find it in blood. Heck look how many people come back positive through VIPdx with a blood test, we are not sending tissues off to them. This is getting a little ridicules...
  21. LJS

    New WPI and CDC XMRV sequences in genbank

    Here is another of WPI's sequences, this one is even more clear. It is really hard to come to any conclusion other than the WPI is finding contamination; see how the below cell line is 100% identical to 22RV1 which has already shown to be a contaminated lab cell line. If it was not a...
  22. LJS

    New WPI and CDC XMRV sequences in genbank

    What WPI is finding is very, very similar to VP62. I wonder if you cultured VP62 a few times if you would get basically what the WPI is finding. Do the following steps to look for yourself.. 1) go here: http://www.ncbi.nlm.nih.gov/nuccore/JF907638.1 2) Click 'Run BLAST' on the upper right 3)...
  23. LJS

    "Childhood Physical Abuse Linked to Chronic Fatigue Syndrome"

    It is crap like this holding back real research on CFS. This is so bad it would be comical if we were not the ones who are on the losing end. I am really surprised this type of garbage is still being published on CFS and fibromyalgia, this is not the 1980's. The first few sentences of this...
  24. LJS

    CFIDS: THE ITERATION OF X (A breakdown of the Dr. Singh's Study)

    Huh? If you look at the bona fide science it is hard to come to any other conclusion: the WPI is not in fact finding XMRV in blood but something else. That is why the overwhelming percentage of scientist think that XMRV is not present in CFS. It is still possible the WPI is the only one able...
  25. LJS

    CFIDS: THE ITERATION OF X (A breakdown of the Dr. Singh's Study)

    You can not prove a negative. It is like trying to prove the loch ness monster does not exist, it can not be done. So scientist are doing what they can do, try everything they can think of to find XMRV with basically no positive repeatable results. Only a few of the prostate studies found...
  26. LJS

    Mikovits responds to Singh Study

    I find it concerning that she is unable to admit any mistakes, no study is perfect and her first study in Science certainly had room for improvement. I feel this is frankly an arrogant response to Singh's Study at this point; "This study says nothing", really?? Most scientist do not like...
  27. LJS

    Virology Blog: Ian Lipkin on XMRV

    http://www.virology.ws/2011/05/06/ian-lipkin-on-xmrv/
  28. LJS

    CFIDS: THE ITERATION OF X (A breakdown of the Dr. Singh's Study)

    I really do not think this is a valid argument. The WPI and patients can not just keep making excuses and changing the criteria for what is valid samples and tests when it is convenient. The WPI has made countless presentations and statements that they are able to find XMRV in blood with...
  29. LJS

    Article: The Singh XMRV Study Strikes Out

    I really, really hope the WPI has done fully blinded re-tests using freshly collected samples from patients and most importantly healthy controls. I also hope they would be willing or able to admit they are wrong if they discover they made a mistake. They are at or past the point where they...
  30. LJS

    CFIDS: THE ITERATION OF X (A breakdown of the Dr. Singh's Study)

    I would be worried about that but the WPI continues to say they can find XMRV in the blood, I even tested positive through the VIPdx blood test, which the results seem to be almost random among CFS patients. Dr. Singh even tired to use WPI's test used in the Science study and was unable to find...