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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. M

    Lipkin bad news folks

    The laboratory scientists were told how the study would be interpreted. No other options were given and there was no negotiation, apart from the months it took the physicians to define the patients who had no abnormal laboratory findings. Dr Lipkin does say that CFS is not a single disorder, so...
  2. M

    Lipkin bad news folks

    The group was instructed to comply with the interpretation several months before commencement of the research. This included Dr Coffin's design and the case definition devised by the physicians and Suzanne Vernon. No other options were given. Dr Mikovits would never be allowed any influence over...
  3. M

    Lipkin bad news folks

    Dr Lipkin reported this as a finding from 20 years ago. Why then did he not have patients for the last study screened for this maker? It would have been an advantage to marry the PCR and serology results to that marker.
  4. M

    Any news on Lipkin study?

    It is not conducive to retroviral discovery if those patients were not the correct disease to begin with. Placing such a burden on a handful of people lowers the chances of discovery. Dr Alter and Dr Lo moved to another tests with pMLV primers, but it is not possible to know whether those tests...
  5. M

    Any news on Lipkin study?

    He has said xmrv is not one of the pathogens, and he would know because to look for a sequence his primers would need to target the suspected infectant. It is confusing to say pMLVs as this is a form of mouse virus, so would be reasonable to say he could find xenotropic MLV-related viruses which...
  6. M

    An unacceptable silence

    The WPI and their licensee, REDLABS, should be subjected to a criminal investigation. In the United States laboratories may develop test and sell tests, but these two parties have claimed that theirs for XMRV were clinically validated, and they are liable for that. This is not related to...
  7. M

    Any news on Lipkin study?

    Deep sequencing technology won't be applied to the retroviral sequences, unless, perhaps, he has changed his mind post the results detecting fragments and serology? http://blogs.wsj.com/health/2011/09/15/applying-venture-philanthropy-to-chronic-fatigue-syndrome/
  8. M

    Any news on Lipkin study?

    Dr Lipkin is studying known pathogens for the CFI using deep sequencing, but he is not looking for retroviruses in that study. http://trialx.com/curetalk/2011/11/dr-ian-lipkin-and-dr-mady-hornig-use-deep-sequencing-and-proteomics-to-hunt-cfs-viruses/
  9. M

    Lipkin bad news folks

    There is no doubt that CFS is hardly a single entity, but this does not negate the obligation to continue study of the results based on the dual positivity findings. It is imperative to continue and I think Dr Lipkin has not been appropriately cautious in this regard.
  10. M

    Lipkin Study Press Conference 18th Sept

    I have another reference for that. http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html
  11. M

    Lipkin XMRV study to be released June 30th

    The blood group were attempting to build new methods that could be utilized for testing blood stocks, which all laboratories involved in the study failed to complete. This may not have finished that way if they had continued to phase IV. So the tests are not what had been previously used...
  12. M

    Lipkin Study Press Conference 18th Sept

    The current fashion is to publish links on multiple media hosts. Do I follow, that you are unable to find where this message originated?
  13. M

    Dr O'Keefe - Paper accepted for publication

    It is typical to pull out one sequence with a particular test and differing versions with others. As is found with the retroviruses no two sequences are produced from a single test. To then find unknown sequences that infect below the ability of PCR next generation sequencing is the preferred...
  14. M

    Dr O'Keefe - Paper accepted for publication

    Dr Lipkin is not using next generation sequencing (NGS) to look for retroviruses in MECFS patients. He is to use it to look for EBV, HHV-6, about thirty in total, for the CFI project.
  15. M

    Any news on Lipkin study?

    It may be applicable, but MECFS is unable to achieve a similar purity of cohort that can be studied in isolation when selecting people with chronic graft-versus-host disease (cGVHD).
  16. M

    XMRV testing: The REDLABS, trading as VIP Dx, WPI connection

    Documents that say the tests were clinically validated are accessible on the internet from the WPI and Redlabs, and were published before and after sale. As remarked upon within their own press release, after tests were no longer available, Redlabs still continued to process paid for samples.
  17. M

    Any news on Lipkin study?

    Patients taking Rituximab relapsed shortly after stopping treatment which had removed B cells from the body, suggesting that these cells are not the source of the disease. This diagram (fig 1) reports on the rebuilding of B cell levels over time and would not correspond with a sharp return to...
  18. M

    XMRV testing: The REDLABS, trading as VIP Dx, WPI connection

    Dr Lombardi was assigned with clinically validating the tests which had then been licensed by the WPI to Redlabs, two companies where Annette Whittemore and Harvey Whittemore respectively would be liable as controllers of those companies as well as the companies themselves. Ownership is a step...
  19. M

    XMRV testing: The REDLABS, trading as VIP Dx, WPI connection

    You should not encourage patients to post documents on the internet that may be used in future claims, as it may be prejudicial to any case. A laboratory can clinically validate their own tests if they follow the proper procedures and continue to maintain that process on a regular basis. No...
  20. M

    Increased nuclear factor-κB and loss of p53 are key mechanisms in ME/CFS

    The paper is proposing a role for p53 but none of those studies or any other has taken a look at p53 levels, so there should be no expectation for p53 to not be similar to cancer levels.
  21. M

    Daily Beast: Interview with Mikovits who tells her side of events...

    It is contradictory to say science is grey and self correcting, but as others have discussed self correction is a belief and grey is not a prerequisite. Other studies have had no trouble detecting the viruses and continue to have spotless results with those tests. If it was your position to not...
  22. M

    Increased nuclear factor-κB and loss of p53 are key mechanisms in ME/CFS

    I have not found a p53 paper for MECFS. Do you have one?
  23. M

    XMRV testing PART 2: Blood doesn't come cheap (the butchers bill)

    This is strongly favoring full disclosure from Redlabs if they believe this to be clinical validation and is probably damaging to the WPI if they think that this is sufficient.
  24. M

    Daily Beast: Interview with Mikovits who tells her side of events...

    Science is self correcting and now it is all grey? Science comes in all flavors encompassing integrity and corruption, but there is no special ability for the middle ground to dominate every instance.
  25. M

    XMRV testing: The REDLABS, trading as VIP Dx, WPI connection

    The questions under discussion are not of science but fact. The WPI licensed tests to Redlabs and at various times both have made claims that those tests were clinical validated, which has a precise meaning. If a test is not as advertise patients in the UK or US who brought those privately can...
  26. M

    Daily Beast: Interview with Mikovits who tells her side of events...

    The results of the tests from the Lombardi paper have still stayed as they were, positive and absent contamination. What have you else? Only those tests are the ones validated for detecting virus in a set of patients. If you are using the blood study to switch focus I would have thought you knew...
  27. M

    XMRV testing: The REDLABS, trading as VIP Dx, WPI connection

    Why do you deflect from the liability of the laboratory or licensor? Redlabs and the WPI as licensor would be liable for tests brought directly by patients in the UK from the US laboratory or through a private doctor if the tests were clinically unvalidated as this was not how they had been...
  28. M

    Daily Beast: Interview with Mikovits who tells her side of events...

    Knowledge of one test is not the knowledge of another, meaning the results are always the same for the tests in the Lombardi paper and contamination continues to be absent.
  29. M

    XMRV testing: The REDLABS, trading as VIP Dx, WPI connection

    I am linking to several articles on previous prosecutions of laboratories as it is unfortunate that some are trying to convince others that laboratories are not culpable...
  30. M

    XMRV testing: The REDLABS, trading as VIP Dx, WPI connection

    Not that this is of consideration for liability, but the document from the Whittemore v Wingfield civil suit doesn't mention who the current owners of Redlabs are. Only 50% was sold in 2004. Liability for a test belongs to the laboratory selling the test and those who control the company...