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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. dschlindwein

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Please add VDR test results to the list, if available, please? Thank you wonderful people for participating in GcMAF trials. I am feeling just a bit discouraged myself because I tested homozygous polymorphic Bsm (i.e. BB) when my VDR gene was looked at about 6 years ago by Genovations (now...
  2. dschlindwein

    Comment by 'dschlindwein' in 'Being and Thinking: the Quality of Life Blogs Begin :)'

    Hi Cort, One thing to DO is to get rid of that mental list that most of us have of important books that we think we should read before we die, acclaimed movies that we think we should see, places we think we should visit, etcetera. Doing that actually made a noticeable difference in my state...
  3. dschlindwein

    Article: Lot of Questions at Int. XMRV WorkShop Q&A...and one BIG Answer?

    On Sept. 10 pictureofhealth suggested we read Dr. Cheney's comments on the workshop, which were sent to Rich Van K with permission to re-post. Thank you for doing so, pictureofhealth! For those who are reading this blog somewhere other than the PR website, or who do not know where to find the...
  4. dschlindwein

    Comment by 'dschlindwein' in 'MLV-Related Viruses - an explanation'

    Maybe you're right, but we are then owed an explanation of [Xenotropic MLV], which, as both of us have noted, is self-contradictory unless the MLVs in question do not cause cancer in mice. I'm going for {Xenotropic [MLV]-related virus}, where the MLV's becoming xenotropic is why "-related...
  5. dschlindwein

    Comment by 'dschlindwein' in 'MLV-Related Viruses - an explanation'

    After I posted my most recent reply I saw your thoughtful response to my earlier two questions. I think we are both converging on "mutated {Xenotropic [MLV-related virus]}." But we are not the ones who named the thing! So much to learn, and so little mental energy. My brain got a workout...
  6. dschlindwein

    Comment by 'dschlindwein' in 'MLV-Related Viruses - an explanation'

    Would another possibility be that what the WPI found is a mutated {Xenotropic [MLV-related virus]}, which because of its mutations can no longer infect mice? I suggest this because the [Xenotropic MLV] part of [Xenotropic MLV]-related virus still doesn't make sense to me. Why would an MLV's...
  7. dschlindwein

    Comment by 'dschlindwein' in 'MLV-Related Viruses - an explanation'

    Second try: You are clear at the end of your post about XMRV not actually being Xenotropic. Therefore [Xenotropic Murine Leukemia Virus]-related virus. So, does this mean that humans picked up an MLV (which therefore became a Xenotropic Murine Leukemia Virus) and it may have been harmless to...
  8. dschlindwein

    Comment by 'dschlindwein' in 'MLV-Related Viruses - an explanation'

    Thank you, Bob, for delving into the PNAS publication and explaining how it complements and reinforces the WPI's findings. I'm somewhat confused, though, (not your fault, I'm sure, it's just my dysfunctional brain): What is the "scope" (as we use the term in linguistics) of the terms...
  9. dschlindwein

    News from WPI symposium: Name change to be proposed for XMRV

    Maybe XMRV is still XMRV--the retrovirus associated with a virulent form of prostate cancer. Maybe what had been thought to be a different strain of XMRV, the strain that causes ME/CFS, is not simply a different strain of that same retrovirus but a different retrovirus which therefore needs its...
  10. dschlindwein

    Dr. Kathleen Sibelius on NPR tomorrow.....................

    The phone number to the show is 800-989-8255 begin_of_the_skype_highlighting**************800-989-8255******end_of_the_skype_highlighting. I don't know Kathleen Sibelius will be on the first hour (2 pm Eastern time) or the second (3 pm Eastern). Here is a link to a page titled "How to be a...
  11. dschlindwein

    Easy Solution to Treat CFS - Dr. Oz

    I wish I had my DVD set of Dr. Cheney's 2009 public lecture, so that I could rewatch the Q&A there and write in more precise terms, but I loaned the DVD set to a friend. Dr. Cheney does strongly oppose the use of D-Ribose, but not just because he has "found it to be of negative use." His...
  12. dschlindwein

    XMRV characterisation

    Could it be that gene therapy experiments conducted in the early days of gene therapy (early 1970s?) are what got a retrovirus related to MLV into the human population? Or am I exposing my extreme ignorance?
  13. dschlindwein

    Trying to warn people about potential risk of HRT in CFS, if you feel like reading

    This links to a really lame report of a really lame study (not even worth reading) conducted by the Conspiracy to Deny and Conceal (CDC): http://www.hqlo.com/content/7/1/67#B8 What's interesting is that they excluded from their CFS study anyone with untreated thyroid abnormalities. As I wrote...
  14. dschlindwein

    XMRV and Thyroid Cancer?

    I am a patient of Dr. Cheney's. Perhaps he does treat more severe thyroid dysfunction, but he has deliberately kept me off thyroid supplementation, even though my tested values fall into the abnormally low range. As I wrote in an earlier post, his idea is that lowered thyroid hormone...
  15. dschlindwein

    XMRV and Thyroid Cancer?

    A conundrum. I will assume you are correct in saying that low thyroid function mimics the symptoms of ME/CFS, so including people with untreated thyroid problems but no ME/CFS into an ME/CFS study would be wrong. (But you know how utterly stupid those Conspiracy to Deny and Conceal (CDC)...
  16. dschlindwein

    XMRV and Thyroid Cancer?

    I skimmed that really lame CDC report and also noted that they excluded people with untreated hypothyroidism from their really lame study: previously unrecognized hypothyroidism was the most common exclusionary condition detected during this study (excerpted from the CDC (Conspiracy to...
  17. dschlindwein

    Difference between sudden and gradual onset XMRV

    Really, there should be a fourth: Suddenly Gradual. I remember precisely the day in 1996 when the fatigue hit me, but I was still able to work (though not very well) for about six months before I just had to quit. For about a year after that first day of fatigue hitting me I just declined...
  18. dschlindwein

    Comment by 'dschlindwein' in 'Possible overview for XMRV viral mechanism'

    Yes, thank you for the excellent post. I appreciate your ability to write about this research at exactly the level that an educated non-biologist like me can understand.
  19. dschlindwein

    Comment by 'dschlindwein' in 'My Old Mouse Theory'

    X-Files!! I expect something like this may well be the story. I really enjoyed reading your blog. I became ill in 1996 during/after a pregnancy, shortly after the fetus died but before I experienced the actual miscarriage (bleeding out), which was delayed for about three months (this is...
  20. dschlindwein

    Nature.com report that Alter paper reviewers want "additional studies"

    "There is currently no consensus or explanation of how and why the two papers reached different conclusions. My belief is that the NIH/FDA researchers will now be pressured to change their results to agree with the CDC, or explain why their results are different. I don't see how they can explain...
  21. dschlindwein

    Article: How to Answer "What's Wrong With You?"

    It's also nice to imagine that sooner or later CFS will be recognized as a real disease caused by a nasty retrovirus. It makes the whole thing just a bit easier to endure. Yeah, someday those folks will think back and remember that they once knew someone with that disease, and belatedly change...
  22. dschlindwein

    Article: How to Answer "What's Wrong With You?"

    I certainly can't say it without regret. It's tricky with the people who are somewhat close and therefore have to know that I have what I now prefer to call X-AND (or more simply XMRV) but who cannot possibly imagine how getting up from my bed can be so very hard to do. Again and again I...