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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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Even if it does- it is not a cause.
Yeah- and he just admitted that the case for contamination is now much less likely. That is part of why he came today.
[A]t this point there are at least two other hypotheses that are equally likely for this virus: that XMRV is a lab artifact, or that it's a bystander.
Before accusing the patient community of fallacious and faulty logic one should note the accompanying commentary in PNAS suggesting starting antiretroviral trials in CFS right now.I know this kind of uncertainty isn't what people here want. It's not what I want, either. But I also don't want people leaping to conclusions, then using those conclusions to justify taking toxic chemicals and experimental therapies that could do more harm than good.
Outsiders (for want of a better word) sometimes assume that we are mostly interested in the psych/organic issue. The truth is that what we really want is research, into all aspects. The obsession with continually studying the brain/mind has diverted attention away from other crucial aspects of the disease. So much is being missed and so much time is being lost focussing on one area. Since when was this a good model for any disease. All we get is CBT and GET studies, with slight tweaks here and there, with no use of objective outcome measures and little honesty in their interpretation.
We get it, V99. You've already won the crowd with the psych argument. So, the next time we have this discussion with "outsiders" we need to educate them in a way that invites more discussion, and doesn't antagonize them when they are trying to build bridges with us.
The lab artifact hypothesis is certainly getting less likely, but it still hasn't been eliminated.
Not understanding the "it is not a cause" part. I thought the consensus was that we don't know for sure, so how can you say it is not?
Giving the three hypotheses equal weight is ridiculous when one considers all the evidence.
Alan is ignorant of the history of CFS, is unwilling to learn about it, and is smugly and self-righteously telling us that we aren't capable of having an informed opinion or making predictions about where the research will lead.
You see antagonism everywhere.
He came to mend fences, stated his position, and left when attacked.
Obviously he came to "educate" what he sees as a bunch of emotional scientific illiterates incapable of thinking for themselves.
He said patients are emotional and don't know how science works on TWIV. It is not my leap, they are his words.His wife may be a psychologist- but you're playing one. That characterization of his motivations today is a ten story logical leap.
And those quotes around the word "educate" falsely imply that he said that, which he didn't. This is the second disingenuous quote you've used in the last 3 posts.
Well, this stopped being fun quite a while before it started being fun.
He said patients are emotional and don't know how science works on TWIV. It is not my leap, they are his words.
urbantravels said:When I first got sick, I even entertained the notion that I might just be suffering some somatic form of repressed issues - not because I'd heard much about that theory or had it pushed on me by any doctors - just because I wanted to be open to all possibilities of something TREATABLE. Well, I'm working hard on my emotional issues, with some success I think. Anybody at all can use help dealing with the emotional/psychological side of dealing with this devastating illness and all the ways it diminishes your ability to have a "normal" life. To me, there's no question that being emotionally upset makes coping with the disease much harder and to some extent exacerbates the physical symptoms - but I'm also very clear at this point that an improved emotional state, and dealing very clearly and openly with the emotional problems that I do have, doesn't do a thing for my physical disease. I still get flare-ups, bad days, PEM when my state of mind is good (or as good as it gets in the context of how much it sucks to be sick and disabled.)
alandove said:Well, now I guess I know where the big crowds of commenters are coming from whenever I post a blog item about CFS. First, I'd like to thank everyone, or at least almost everyone, for reading and commenting. It's the most feedback I've gotten in the history of my personal blog. [...] <snip>
Second, I'd like to tone this discussion down a few notches.
The Alter paper is very interesting and very thorough, (...) However, the retroviruses the patients are infected with in that study aren't XMRV. So how could XMRV be causing CFS, if the CFS patients in that study aren't infected with XMRV? Yes, the "murine-like retroviruses" Alter finds are very similar to XMRV, but they're not the same. As an analogy, chicken pox and genital herpes are caused by very similar viruses, but their medical consequences are very different. When it comes to viruses, differences matter.
Before accusing the patient community of fallacious and faulty logic one should note the accompanying commentary in PNAS suggesting starting antiretroviral trials in CFS right now.
And you don't see it anywhere. Maybe one of us is wrong?
surrounding CFS there is also what some on this forum have referred to as "reams of psychobabble". The biomedical research is subject to heavy skepticism by default while the frequently flawed psychological research usually goes unchallenged and related speculation is presented as established fact. Double-standards are extremely irritating.
The patient realises that their poor treatment stems from prejudices present in the general public and the health care system, then sooner or later traces much of the psychobabble back to psychologists and psychiatrists, who often appear oblivious to or rarely take responsibility for past mistakes or the impact their claims have on how patients are treated.
During a lack of evidence we can tentatively look towards trends. The trend is, retroviruses cause disease, and chronic illnesses dominated by physical symptoms which are initially judged psychogenic or psychosomatic end up being better explained more in terms of organic pathophysiology.