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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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If this is indeed the main problem I don't see a problem. PANDORAa and the MCPWA support the WPI and Phoenix Rising has as well. but you can't wring water out of a rock - none of us has ANY money - and certainly not the kind of money the WPI needs.
The CAA has not provided money to the WPI but we know they had to slash their workforce dramatically because of their money problems and their first Biobank study is an XMRV study with a company that has a huge incentive to find XMRV - Glaxo Smith Kline. Validating XMRV's presence is the most important thing anyone can do right now - and that study will play a key role in doing that.
The truth is that absent a major, major donor nobody has the kind of money the WPI needs and major, major donors, for some reason, are just incredibly rare in the CFS community. A major donor could step up and provide $5 million dollars and settle the WPI;s problems. That happens in other disorders all the time but it doesn't happen in CFS.
The solution is either major donors, alot of little contributions and grants and grants are obviously a huge part of Research Institute's success - that's big money and hopefully the WPI can figure out a way to get more of them.
A friend of mine from the UK has often labeled well-liked people or organizations as sacred cows, those whom we are not allowed to criticize, even in an appropriate way without personal attacks. If one does attempt to speak out against a particular agenda or misappropriation of funding or energies, they suffer the consequences of being seen as a toxic, negative, non-team player bent on tearing people down who are working very hard on their behalf. Hillary Johnson has repeatedly groaned at the state of affairs with CFS advocacy. At times, I thought she was perhaps too harsh. With the discovery of XMRV though, organizations are becoming even more transparent in where they have stood all along on CFS issues, diagnosis and treatment. Good intentions and good hearts are not enough to win this fight. And unity is not about singing Kumbaya by mass video conferencing. Khaly Castle states in her latest blog that she must "respectfully decline to Unite". I've made a personal decision to no longer worry about being made out a villain if I disagree with any organization or independent effort. I know who I am and why I fight for me, my family and patients. I respectfully decline to Unite as well.
Please read Khaly's full blog below if you have not done so. I stand behind every word 100%.
Wasn't the CAA trying to raise $5 million by the end of 2010? Obviously there is enough money out there to keep the CAA, PANDORA, WCPWA, etc afloat.
Instead of spreading the community's limited resources thin between all of these organizations, why don't we instead cut the dead weight and concentrate money where it will be most effective?
To that end, please donate directly to the WPI: http://www.wpinstitute.org/help/help_donation.html
I know who I am and why I fight for me, my family and patients. I respectfully decline to Unite as well.
The WPI has shown how they found XMRV in the first paper and in their amendment to the first paper. That's the blueprint for finding XMRV. That's all researchers need to know. There is literally nothing else (unless there is some weird little factor that is not elucidated in the first paper) they need to know! You can show how variable XMRV is or that it kills these cells or those cells or that it inserts itself here or disappears from the blood of monkeys after 3 weeks or whatever and all those things are just window dressing at this point but the fact is that everything revolves around finding the virus.
XMRV will live or die based on the WPI's descriptions of how to find it in the Oct paper and in the supplement earlier this year - and in independent labs being able to duplicate their results. It's brutally basic. Ever since they stated we found XMRV and this is how we found it - and this what you have to do to find it - it's been out of their hands. They put their stake in the sand right there. After that it's up to the independent labs to find it.
... This information could be tattooed on the forehead of every retrovirologist in the world, but it wouldn't matter if they just ignore it and instead fall back on a different methodology shown to be insufficient.
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What methodology has been shown to be insufficient, asleep? This is an interesting issue to explore because it could explain the difference between the groups that have found XMRV and those that have not.
Additionally, the failure to detect XMRV may be attributable to differences in the detection techniques employed. We have found that detection of XMRV required rather specific conditions.
I'm not really sure what your point is here. No one has disputed that the WPI has detailed how to find XMRV. The real issue is that, despite this information being available for over a year now, no one has tried to follow it yet. This information could be tattooed on the forehead of every retrovirologist in the world, but it wouldn't matter if they just ignore it and instead fall back on a different methodology shown to be insufficient.
If you are suggesting that the WPI doesn't need funding because the science is now "out of their hands," then I have to adamantly disagree. Denying them funding now would be DeFreitas Redux.
In a nutshell, I'm referring to the exclusive use of unvalidated PCR in all of the negative (0/0) studies. By unvalidated I mean that the PCR assay was not shown to be able to detect wild-type XMRV in a known positive clinical sample. Some of them showed they could find synthetic XMRV in spiked water or DNA, but this is not the same thing.
PCR is a very complex process that requires correct calibration of many parameters (primers, reagents, temperatures, etc, etc).
I linked to the following paper in another post: Detection of Xenotropic Murine Leukemia Virus-Related Virus in Normal and Tumor Tissue of Patients from the Southern United States with Prostate Cancer Is Dependent on Specific Polymerase Chain Reaction Conditions
The WPI and VIPDx have abandoned straight PCR w/o culturing because it proved too unreliable. Yet, this fact seems lost on those churning out negative PCR studies.
... By unvalidated I mean that the PCR assay was not shown to be able to detect wild-type XMRV in a known positive clinical sample. ...
...The WPI and VIPDx have abandoned straight PCR w/o culturing because it proved too unreliable. Yet, this fact seems lost on those churning out negative PCR studies.. ...
How did the WPI demonstrate that their PCR assay was capable of detecting "wild-type" XMRV in a "known clinical positive"?
Lo and Alter didn't culture, they used straight PCR.
Putting Groups and People into a Box - The thing that chilled my bones with Mindy's post was the statement that Dr. Klimas priority is not the patients. By the time I was done ready I got the impression that Dr. Klimas was being put in a box - and it was a pretty dark box.
A Different Interpretation - My guess is that face with a CBT study Mindy only had one interpretation available - she's the enemy and can't be trusted.
You are right and you are wrong in my opinion. Researchers have essentially replicated the fundamental parts of the PCR test. In fact they've gone beyond them. The WPI searched for 2 or 3 portions of the XMRV genome....Some of the other studies have searched for those parts AND others; that's what I was told by a researcher. By all rights they should have found a higher prevalence of XMRV than the original study.
Ditto with the antibody tests... some of them are looking for wider ranges of antibodies in hopes that they will pick up something. That's what I was told. I can't back and look at all the papers - but that's what was explained in detail to me. Theoretically they should be picking up more.
What they haven't replicated are the little details; the same type of reagant, the same types of test tubes, the same type off storage........these are things that usually don't matter - so they can't be blamed for not doing them...
I was told they are replicating the little details now.
The reason is that it is lost is that the WPI stated in the Science paper that they were able to find XMRV in 2/3rds of patients using PCR. There was no hint that this was going to be a problem then. There were no caveats about multiple testing or using the wild type virus that I remember - just follow the instructions on the page and do the PCR.
In any case while PCR may not be as reliable as culturing that doesn't mean you can't find it using PCR...it just means it's not as good. VIP Dx sold alot of test kits using PCR.......I would agree if PCR was turning up lower percentages of XMRV that something was off...but the problem for me is that we keep getting zero percentages. That suggests to me something else other than PCR is not as good a medium for testing is going on.
Remember how this went time-wise for them. Silverman asked them to look for it in their samples and they looked for it and they found it. They didn't have to culture for it or use the wild type virus. They didn't even have the wild virus did they? They looked for it, I assume using the one type they had and that was Silverman's clone and they found it - using PCR..
Everything else came later...Culturing came after they found the virus and wanted to grow it... that is my sense. Later it made more sense to test for XMRV with culture because culture was more sensitive - but that doesn't mean it shouldn't be able to be found by PCR. Again it's the zero results that worry me.
Like I said, I was told studies replicating the WPI's PCR techniques down to the nitty gritty details (reagants, etc. ) are being done and they are using live virus to create their tests - so all this will hopefully get cleared up
... Add to that the fact that none of the 0/0 studies used a positive clinical control to rule out false negatives, and it's not very difficult at all to understand why so many researchers are coming up empty-handed....
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I take umbrage with the continuous propping up of these identical negative studies on this forum w/o any discussion of their glaring flaws. Frequently, the scientific inadequacy of these studies is obscured behind a dissembling wall of non-truths and apologetics.
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I take umbrage with the continuous propping up of these identical negative studies on this forum w/o any discussion of their glaring flaws. Frequently, the scientific inadequacy of these studies is obscured behind a dissembling wall of non-truths and apologetics.