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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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Enough of this nonsense.
Wow again. Given the politeness of everything I said, which was, originally, simply an attempt to explain people's very real frustration, I find this comment quite amazing.
Wow again. Given the politeness of everything I said, which was, originally, simply an attempt to explain people's very real frustration, I find this comment quite amazing.
Yes Wayne, something also needs to be done, this kind of distraction serves no further purpose, and I'm sure we'll be discussing it further behind the scenes.Hi Mark,
That's exactly what I've been thinking since I first checked in this morning. I just didn't want to wade into a line of thinking that strikes me as both endless and senseless. Thanks much for assertively saying what many of us are thinking, and what needed to be said.
Wayne
You yourself have been polite as always awol and the majority of the blame lies with v99. But you have also been following up in generally polite terms with nonsense about how this relates back to previous issues with Cort, which are in fact just more series of the same kind of senseless arguments. Making out that the argument is happening because Cort doesn't listen and isn't reasonable even while he's listening too much and being too reasonable just looks like the role of cheering on a bully to me.
Rusty, I want to thank you for capturing exactly how I feel (your posts #172,174)
Big brother IS watching
A sign of the success of various ME/CFS forums is that they are being visited and indeed cited widely. Alan Dove and Dr Singh are just two examples. Similarly, this patient community IS being listened to - one just has to read Dr Alter's comments on the decision to publish earlier rather than later (i.e. before finding proof of viral integration), to get the sense that he realizes this community is in dire need of robust biomedical research.
If this community can't get facts right, who will?
As this forum grows, I would echo Rusty's sentiment that the burden of responsibility for accuracy increases on ALL forums. Does that mean that articles should be pristine at first posting? Absolutely not, and correction of facts has nothing to do with whether we appreciate the article in the first place. However when factual errors are pointed out, I would hope there is more of a thirst for being right, than for being perceived to be right.
Many of us are in awe of Cort's prodigious output, particularly within the context of an ME/CFS diagnosis. However many of us have also experienced significant difficulty in effecting change matter-of-factly when the facts have strayed, and simply don't have the health and energy during relapses to slog through inordinate resistance and escalating invective. The reality is that this forum has a long history of skirmishes - often related to perceived bias, and incorrect facts. These skirmishes often escalate - rather than being systematically and matter-of-factly nipped in the bud by correcting factual inconsistencies. It's just the culture of this place. For all the effort Cort sometimes invests in refuting valid concerns, he could "just do it". I submit that when clear-cut errors are matter-of-factly acknowledged and corrected, this forum is a better place for it.
As the science on XMRV and MLV's explodes, it will be increasingly in our community's best interests for the various ME/CFS forums to be "go-to" sites, where information is indeed factual. And the forums which demonstrate nimbleness in addressing the occasional error will benefit in terms of credibility.
No one wants to be mired in conflict. Surely there must be a middle road between loyalty to the forum host, and sufficient humility to encourage continuous improvement. If forums like this can't address factual errors, why expect the media to do so?
How can we help Cort make this a better forum?
Now for the practical considerations: Cort, HOW do you want people to bring up factual errors? Would it be helpful if people took the time to rewrite a contested segment? Or do you just want a succinct bullet list detailing the error that you can wordsmith? Do you want the first comments through PM's? Will you respond to them? What are some tangible ways that members can make it easier for you to be willing to address errors? What are some tangible ways that we can make it easier for you to incorporate edits when factual errors are identified? Would it be helpful to have a "how you can help me" segment in Nuts and Bolts? Other than the obvious issue of addressing tone on both sides, is there something that would make this process of continuous improvement happen more swiftly and easily, so that seriously ill patients giving feedback aren't also burned out by the process?
Bottom line, the issue of how - or whether - factual errors are acknowledged and corrected is not something that is likely to disappear. Until Cort and the forum come to some understanding of "what works", and how best to do this, we will just keep spinning wheels.
Any other constructive ideas on how to move this beast forward?
I will let it pass for now, others can review the record. Anyone can and does judge any publication in context, as they do with Cort. No problem there. And you are continuing to discuss Cort, and you accused him of bullying Dr Mikovits (ridiculous) above, and of a 'proven negative agenda', so you seem not to get the point - no more of that nonsense, that's exactly the sort of thing I was talking about. You may want to continue the exchange, nobody else does. Enough now please.For the record, I have never attacked the CAA myself (I have explained others' perceptions of the CAA which is different). Nor would I write articles doing it. But if writing an article about someone's science, I would give their own statements on that science high importance. I would also treat as highly suspect, journalist assesments of science (they are not experts) and the comments of those with a proven negative agenda against that science. I am trusting you will let this message pass, as your own created a false impression of me and what I am saying that required rebuttal.
Bingo.....lets talk solutions. Thank you Parvofighter
That is correct when I re-read it, so OK.another small correction: the "proven negative agenda" was not a reference to Cort. I was referring to the general need to carefully assess sources for articles.
"Four viruses?" sums up the central question that the study poses: are these really different, or not? They have been named as 4 viruses - that is what the studying is positing. So it's a perfectly fair question to ask to posit this question. That's what the study itself does. XMRV, CFS-1, CFS-2., CFS-3 are the 4 viruses now said to have been associated, and Cort puts a question after that and considers the question.Cort,
I don't entirely understand your refusal to change the title. Jace's point is quite valid. It is very misleading. There are not four viruses, and only the likes of McClure are trying to say that the paper does not back up the work of the WPI.
Or rather: is this finding and interpretation of the positive XMRV results being distinct from the group of 3 additional MLVs correct?are these really different, or not?
''I'm going to draw the line where I always draw it: if people with CFS benefit from any therapy they are welcome to portray it here.''
I suspect that there are a going to be a percentage of people who do very well on LP. The reason I suspect that is that it seems to be true for people trying all sorts of protocols from the methylation protocol, antivirals, antibiotics, hormone therapy, homeopathics, to stems cells etc...some people will do very, very well on each of them and most people will do less well or not well. This is very wide disorder with all sorts of subsets and each of them is worthy of discussion. In the next couple of weeks, for instance, I'm going to present blogs on people who significantly improved using pregnenolone and 5-HTP.
"Four viruses?" sums up the central question that the study poses: are these really different, or not? They have been named as 4 viruses - that is what the studying is positing. So it's a perfectly fair question to ask to posit this question. That's what the study itself does. XMRV, CFS-1, CFS-2., CFS-3 are the 4 viruses now said to have been associated, and Cort puts a question after that and considers the question.
If you don't entirely understand his refusal to change the title for you then that is your fault.