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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. Dr. Yes

    Article: Comedown at CROI: XMRV and CFS at the Conference on Retroviruses and Opportunistic Infectio

    Here's the view from within the CROI conference according to an HIV clinician, as reported by Mindy Kitei: "As far as the XMRV presentations, the physician said it was glaringly obvious to him and to others that the opposing side—those who have found the retrovirus XMRV in ME/CFS patients and...
  2. Dr. Yes

    Who am I? it all seemed so simple once

    Thanks meandthcat and all for sharing your perceptions. My brain is too fried to say anything about my sense of self at the moment, but much of what has been said here sounds very familiar.
  3. Dr. Yes

    William Switzer - CDC looking for XMRV and MLV in lab workers!

    My understanding is that the gag and env fragments were bulk-sequenced in Lombardi et al, which means that some genetic diversity would be missed, such as the P-type viruses. The other point about Hue et al is that they ignored the possibility that the original source of the virus was the...
  4. Dr. Yes

    William Switzer - CDC looking for XMRV and MLV in lab workers!

    Actually Cort, CBS is correct. The CDC has never replicated the WPI's methodology for PCR and serology assays. They used different methodologies in both cases. In order to be so certain that your assay can detect something that failure to detect it would imply absence of that 'something', you...
  5. Dr. Yes

    William Switzer - CDC looking for XMRV and MLV in lab workers!

    I don't know if that's correct; even Miller in his comment to Retrovirology about Garson et al states that he'd like to see evidence to support that assertion. In any case, and I repeat, Garson et al's observations only apply to two of the fourteen integration sites identified in prostate...
  6. Dr. Yes

    William Switzer - CDC looking for XMRV and MLV in lab workers!

    That's not true - see the CDC's Phase IIa results from the BWG. They found CFS patient samples positive for XMRV and what they called "MLVs" using two new PCR assays that they hadn't used before. Inexplicably, they immediately afterward abandoned using those assays! Whoa, whoa! That's not...
  7. Dr. Yes

    William Switzer - CDC looking for XMRV and MLV in lab workers!

    There is a difference between XMRV being a contaminant and XMRV being accidentally produced in a lab. The WPI and NCI have found immunological responses to XMRV that are concordant with NAT results on the same samples. Silverman and colleagues found integration of XMRV in prostate cancer...
  8. Dr. Yes

    William Switzer - CDC looking for XMRV and MLV in lab workers!

    If I was a CDC lab tech, I would reeeally not feel encouraged if Switzer told me he found me negative! Unless he uses one of those two new CDC PCR assays from Phase IIa of the Blood Working Group, which found both XMRV and other MRV's in CFS patient samples.. but oh yeah they abandoned those...
  9. Dr. Yes

    Suzanne Vernon: "Agency heads are scared to death...if XMRV works out"

    Hi Jennie - If that's really what Dr. Vernon meant, then it doesn't make sense to me at all; the argument seems counterintuitive. Why would agency heads (at the NIH and CDC, I assume?) have anything to fear from patients if XMRV is shown NOT to be associated with CFS? Why would patients be...
  10. Dr. Yes

    WPI Responds to UK PACE trials

    +1 And the WPI doesn't even have an advocacy arm yet!
  11. Dr. Yes

    Article: Guilty!.... By Association? Taking Our Measure

    OK.. but I'm still not clear on what you're saying. What was your point? What does that have to do with CFS? In what way was Dr. Vernon's statement, which was clearly referring to an association of child abuse, etc with CFS (based on a badly defined cohort) qualify as "right"? :cheeky grin...
  12. Dr. Yes

    National conference on Retroviruses -- Feb 27-Mar 2, 2011 (Boston)

    Hi Leaves - the most comprehensive FB post from XMRV Global Action is here: http://www.facebook.com/#!/notes/xmrv-global-action/dr-mikovitsdrs-ruscetti-not-invited-to-the-croi-please-email-concerns-to/10150112632796797 The comments by Andrea Whittemore are in a previous post on this subject...
  13. Dr. Yes

    National conference on Retroviruses -- Feb 27-Mar 2, 2011 (Boston)

    The politics of XMRV-CFS research have reached a new low. According to Andrea Whittemore on Facebook, neither Judy Mikovits, Frank Ruscetti, nor Sandra Ruscetti were invited to CROI; also, the CROI abstract committee rejected at least one of their abstracts on XMRV and immune dysfunction. John...
  14. Dr. Yes

    Article: Guilty!.... By Association? Taking Our Measure

    Cort, like Justin, I find this comment of yours confusing: are you actually saying that Dr. Vernon (and therefore the CDC research based on the Wichita cohort) was right that the development of CFS is associated with childhood abuse or neglect in some cases?? As for your other points, it is...
  15. Dr. Yes

    Article: Guilty!.... By Association? Taking Our Measure

    One concern I have is that that some researchers may find it difficult to look at the body of evidence on CFS in general without letting their own previous research work, along with preconceptions, color their evaluations. In Dr. Vernon's case, there are 'pieces of evidence' that are far more...
  16. Dr. Yes

    BREAKTHROUGH: New Spinal Fluid Analysis Distinguishes Lyme from CFS

    The reason for caution is the need to establish scientifically valid conclusions. In order to correctly identify a potential biomarker from CSF, one must be able to control for health conditions that can result in similar levels for a given protein or proteins. Everything from major depression...
  17. Dr. Yes

    BREAKTHROUGH: New Spinal Fluid Analysis Distinguishes Lyme from CFS

    Yes, but when they follow it up they have to be sure to compare results with people with other conditions that might have similar CSF proteomes, and also use a stricter definition for their CFS patients; otherwise they can't be sure they are looking at a CFS-specific abnormality. I don't think...
  18. Dr. Yes

    BREAKTHROUGH: New Spinal Fluid Analysis Distinguishes Lyme from CFS

    There have been tons of compelling biomedical findings in CFS research, but few are really followed up, generally due to a lack of funding. The Kerr studies that found 88 dysregulated genes in CFS patients are one notable example. This new study found elevated levels of endogenous proteins...
  19. Dr. Yes

    Caa poll

    Assuming that it is even possible to pressure the board to remove Kim McCleary, how do we know that they won't replace her with someone equally inadequate, or worse? We don't know much about the board, and it's quite possible that it largely shares McCleary's agendas. I'm also not comfortable...
  20. Dr. Yes

    Suzanne Vernon: "Agency heads are scared to death...if XMRV works out"

    Thank you for telling us about this Shane. If someone from an organization I trusted to be working intelligently on my behalf told me not to repeat a comment like that, I would not, but I don't feel that way about the CAA, for the same reasons you outlined. There is definitely a pattern to...
  21. Dr. Yes

    Article: Stars Not Aligning Any More: CFS NIH Grant Panel (SEP) Reverts, McClure on Board

    Thanks Cort.. actually his name is Brian Hoshaw, and there's info on him here: http://www.csr.nih.gov/photodisplay/finalroster.aspx?f=Brian&l=Hoshaw&e=hoshawb&srg=CFSH Seems his PhD is in experimental psychology. And he had the main hand in selecting the panel. More adorable!
  22. Dr. Yes

    Article: Stars Not Aligning Any More: CFS NIH Grant Panel (SEP) Reverts, McClure on Board

    Hi Cort and all... unfortunately, I think Maureen Hanson will be excluded from reviews of WPI grant proposals because of her recent collaboration with them, as that's considered a conflict of interest. That leaves McClure as the sole 'expert' on the panel for consideration of any WPI study...
  23. Dr. Yes

    Maldarelli XMRV Study Underway

    As to the study proposal as it has reported to this point, I like others have many concerns based on what we so far know about its proposed design and observance of protocol. [For the anecdotal reports from people who spoke to him, see the thread previously linked by eric s.] Among them...
  24. Dr. Yes

    Blood Products Advisory Committee Meeting Announcement (BPAC) December 14-15, 2010

    All the posts and tweets cited here are by the valiant ValB626, whose complete postings from the meeting can be found here: http://www.mecfsforums.com/index.php/topic,3875.30.html No, she did NOT say she found contamination in her controls!! Val's post is referring to the fact that Hanson...
  25. Dr. Yes

    XMRV and MLVs -- Clarifcation

    Hi Laurel B :Retro wink:, omerbasket is right; the viral sequences found by Alter/Lo belong to MLV-related viruses extremely similar to the corresponding bits of XMRV described in prostate cancer and in the Lombardi study. These are all called MLV-related because they have not been found in...
  26. Dr. Yes

    'Natural' antiretrovirals?

    Lactoferrin's effect on MLV infections appears to be indirect at best from the few articles I've seen. Disturbingly, at least one study found that it can actually enhance HTLV replication, despite having a suppressive effect on HIV: http://www.jimmunol.org/content/166/6/4231.full
  27. Dr. Yes

    Comment by 'Dr. Yes' in 'XMRV - Human Virus or Mouse Virus? Technical Explanation.'

    Hi Bob Thanks for clarifying your post! To "jump species" means that a pathogen manages to establish infection in a population of another species. A viral protein by itself cannot jump species because it has no means of replication. It may enter the blood as a contaminant but that would be...
  28. Dr. Yes

    Comment by 'Dr. Yes' in 'XMRV - Human Virus or Mouse Virus? Technical Explanation.'

    Hi Bob! Just wanted to correct or clarify a few key points in your post: The term 'xenotropic' was used to apply to MLVs in certain lab mouse strains (the only ones studied at the time) that were endogenous but could no longer infect cells from those mice. However, some could still be...
  29. Dr. Yes

    Suzanne Vernon Speaking in Colorado--Any Questions You Want to Ask?

    Many excellent points by mojoey in this thread; I would like to expand on some specific parameters of performance for which we need to be able to hold the CFIDS Association accountable; perhaps these will provide some necessary clarification to the community of the Association's stance and...
  30. Dr. Yes

    2 more studies that found, you guessed it, zero XMRV

    Hi Hope, However, to date (unless something happened within the last year) no one has proven that any HERV is capable of producing infectious particles. Yet the WPI/NCI study showed that XMRV could infect previously uninfected cells. Some replication-deficient/incomplete HERV particles can...