Discussion in 'Action Alerts and Advocacy' started by Levi, Nov 9, 2009.
What is wrong with the Wiki editors This is not the first time they refuse to consider that CFS has biomarkers.
Science isn't a good enough source for them?
What a mess <grins>
Reading both the on going discussion and the actual article itself was really interesting. The article is a complete mess with bits and pieces missing. It reminds me of the current state of the CFS community.
The original article is heavily weighted toward somotaform disorder because there are more articles published and peer reviewed at this time with heavyweight names behind them that prescribe to that theory. I think the number is 104 internationaly???
There are only 59 actual research based articles available I believe, at this time. All of the other articles available right now are reviews and theories based on other peoples research, some of years old.
The Wiki's pride themselves on making sure that information is accurate, properly cited and properly weighted within every article.
Just imagine one piece of misinformation can be used in newspapers, e-zines and other articles around the world for years! That would be a huge ouch if it turns out it's not accurate.
I don't envy the authors and editors in making decisions right now. In the next year it's likely that everything we know will be turned upside down and sideways. Maybe it will turn out like we all hope and maybe it won't. Tough to tell.
XMRV is mentioned on the main page. I hope everyone reads the talk page and article before we get any knee-jerk reactions. I've been following both (article and talk page) for quite some time and I can tell you that a number of the contributing editors are ME/CFS patients themselves.
That said, no offense to the OP, but I think the title of this thread is a bit sensational or at least misleading. There is relative "peace" over at the talk page at this time. The discussion over there is civil and reasonable for the most part.
Believe me, while not perfect, the page is much better than it was in recent past.
Also, I'd like to caution people thinking about editing the page - please don't attempt to unless you know what you are doing. Wikipedia, believe it or not, adheres to strict editorial guidelines. If you have any concerns you might wish to express, please use the talk page.
This is an excellent piece of advice.
XMRV has been removed from the "Chronic Fatigue Syndrome" page. Pending, I imagine the results of the voting, which is now tied. Prior to them posting an open invite for editors to comment on whether or not it should be included, I don't think anyone even objected to its placement on the page, only how much weight it was given in the overall article. Now it's been completely wiped.
I don't think it'll be back anytime soon and something tells me that trying to bring balance to that page is a losing battle for the forseeable future. Not that it shouldn't be fought, mind you, but there seem to be far too many areas where the opinions of the 'experts' (such as the assertion that the only treatments proven effective are CBT & GET) are going to be given what I think most of us would see as undue strength.
If the CDC does in fact come up with a study far different from what the WPI produced on XMRV, regardless of them using a completely different and probably irrelevant cohort, I think that's going to pose a problem. I don't think that there are a ton of people on Wikipedia hell-bent on having their cfs page tout the view that it's a psychological disorder (in spite of the location mentioned in the user ID of the editor who came along yesterday & turned the whole thing upside down). There are plenty of folks who are intent on seeing Wikipedia's standards upheld, and they are shouting down those who are trying to explain why the standards don't necessarily apply in this case.
Common sense be damned. At present we're not in a good place with this, although we're probably better off than we were until a month ago.
Until today when I looked for XMRV & saw it had been taken down. Because the editors don't believe it belongs there.
The standards say so.
While XMRV is not mentioned on the CFS page, CFS is mentioned on the XMRV page.
Also, I wouldn't worry too much about it. Neutrality is a vital concept of Wikipedia, and part of the reason for its success.
From Wikipedia direct:
I am speculating that XMRV will definitely be included in the article at some point, but there is disagreement as to how much weight it should hold relative to the whole article.
The XMRV study is mentioned in Wikipedia's "Pathophysiology of Chronic Fatigue Syndrome" article:
Evidence that retroviruses were associated with CFS was described in 1991 when retrovirus sequences similar to human T-lymphotropic virus (HTLV) type II was reported in the blood of a subset of CFS patients and not in healthy controls. However, many other CFS studies did not replicate these findings or find evidence of infection with human retroviruses. More recently the possibility that gammaretroviruses may be associated with CFS has been advanced by a study published in Science in 2009 which stated that the newly discovered xenotropic murine leukemia virus-related virus (XMRV) was found in the blood of 67% of CFS patients but in only 3.7% of healthy controls. The authors noted that their finding raises several questions, such as whether the virus has a causal role in the pathogenesis of CFS or may be a passenger virus in immune suppressed CFS patients.
Looks fine to me.
Looks fine to me, too.
ETA Are there really peer reviewed and published studies supporting efficacy of GET or CBT or is that opinion?
If it's opinion it should be removed for the very reasons given to withhold XMRV.
Are there actual studies supporting this codswallop?
The second article actually made me laugh out loud.
To quote just a little more of what you quoted:
"In contrast with the initial hypothesis, the pooled placebo response was substantially lower than the usually reported one third response in other medical conditions. Among the potential sources of heterogeneity we investigated, only the intervention type had a statistically significant contribution to the heterogeneity of placebo response across the trials (p = .03). The second hypothesis was confirmed. Psychological-psychiatric interventions were shown to have a low placebo response, whereas neutral interventions had a medium placebo response. Finally, infectious-immunological and alternative-complementary interventions were shown to have a high placebo response."
And, instead of concluding that we respond better to infectious/immunological and other interventions becuse they are actually addressing the problem, perhaps even illustrating that there is one, they conclude that our response is a "high placebo response."
They go on to postulate how they can increase the placebo effect in other treatment modalities. Never do they consider the obvious.
Sometimes I forget the lunatics are running the asylum.
Thanks for the reminder.
If I'm understanding correctly, subjects were given placebos that were supposed to represent different sorts of interventions, such as a fake anti-viral, antibiotic, depression pill. The placebo effect was lowest for the fake psychological meds and higher for the other ones.
Don't quote me on this, my brain's fudge tonight.
There was a major war at Wikipedia over their CFS page and I was livid that they weren't listening to the patients. I have to say that the page is much improved since the last time I read it and I'm glad. They explain GET and CBT much better now, it's a shame they have to mention them at all but I see there's a link for controversies too.
I don't mind that they took XMRV off the page. They'll put it back if the WPI is proved right which will happen soon I bet.
Oh, I just realized that this thread went on to page 2 and now I don't know what you're both talking about... if your brain is fudge mine is toast.
Blamange Brain here.
Well what you say both makes sense and doesn't. If you give a placebo and say it's a placebo you do kinda ruin the effect.
I will have to read it again.
I don't think they were TOLD it was a placebo, but rather they were given a sugar pill and told it was an anti-viral, abx, etc...
I just had a quick peak and, please correct me if I'm wrong, but they appear to be looking at, and synthesizing, studies which have already been done using placebos. Have I got it now?
Ok, so, it's making more sense to me now.
However, they still grope about it the dark for an explanation regarding our low placebo response to everything... no matter how it was portrayed.
We do not seem a very gullible bunch.
I remember reading somewhere that even Wessely conceded that only about 33% of "CFS" patients (using what criteria is a huge question, especially if the Oxford one is used by the likes of him and White) found GET/CBT helpful. So 66% found this approach did nothing or made them worse...sorry I can't provide a reference.
Be better to read some of Tom Kindlon's excellent work on Co-cure. He digs to see the truth behind the b/s.
Regarding placebo, according to a seminar I attended by Prof De Meirleir recently, it's normal in trials to have up to a 20% placebo response.
Wessely on CBT and Graded Exercise.......
Not 'remotely curative'.
They are correct in that we do not yet have a biomarker yet until the replication is performed.
I think that this will no longer be the case within a year to six months. We just need to hold tight a little longer until things shake out.
Many of us were down a similar road in 2007 with Dr. Montoya's publication (granted, it was in a lesser journal).
We really want to avoid getting into an editing war on Wiki until we have our all out proof. We also do not want to get into things yet with clowns like Wessley and White.
Wait until we have the full out proof, then crush them.
Great idea Levi. A few years ago, I re-wrote the Wiki article on Fascia. I think most of it is has remained unchanged/unchallenged, so I guess that means it was up to Wikipedia standards. I'll help out with the XAND one where I can.
As for your comment about not being a good writer, I disagree. Especially for the kind of technical writing that is required on Wikipedia, I'd say you've got it down. Just the facts, m'aam.
You can also try a Google Site Search
Separate names with a comma.