Join me in the Penalty Box
Please tone the rhetoric down
Please tone the rhetoric down and stop using such inflammatory language: It's fine to disagree with Dr. Vernon and point out what you believe to be the CAA's errors but saying the CAA is 'stonewalling' XMRV research is overally inflammmatory.
Precision in language: my signature
Cort, Ive been resting up for my monthly hospital trip tomorrow, so missed the last several hours. Frankly, I am astonished. Stonewalling is a precise term which aptly captures what I believe Dr Vernon to have done in the early months of XMRV research. As Dr Yes rightly points out, it is moot whether the resulting delay in XMRV research was intentional or unintentional.
Any delay of XMRV research particularly if XMRV is proven to be causal for CCC patients is unconscionable. The long list of XMRV studies is irrelevant. We did not have this list, whilst the psycholobby were monopolizing the airwaves. Living with daily angina, I and many other ME/CFS patients with cardiac complications - am a ticking time bomb. And Im under 50. Our kids need me. I make no apologies for my perceptions, and my rightful concern that intemperate comments or unjustified bias particularly from the CAA might have delayed XMRV research. Any delay is unconscionable. And as you can see from the other forum responses, my perceptions are well within the bell curve not that conformity to anything other than my principles and good science, has ever been my guiding principle.
Some context on stonewalling
Stonewalling:
http://wordnetweb.princeton.edu/perl/webwn?s=stonewalling
- Stalling or delaying (XMRV research), especially by refusing to answer questions or cooperate (eg. provide balanced coverage on XMRV research)
- Obstruct or hinder any discussion (eg. leaving Pharma Executive with the impression that Vernon has thrown down the glove to the WPI not to the equally and more deserving - UK/Dutch papers)
- Engage in delaying tactics or refuse to cooperate (not cooperating with the Boards edict, by not critiquing all XMRV papers with the same rigor).
Cort, stonewalling is exactly what Dr Vernon did, in my eyes. Having grown up in a linguists family, I stand by my precise use of terms, and make no apologies for precision in my language.
Fonts used as a courtesy for months - to neurocognitively challenged readers
I would also point out that I use fonts precisely, to clarify my points and allow a skim of material-rich posts something I have done for over 300 posts since October, and indeed in my corporate presentations and book. I do this on the forum as a courtesy to the neurocognitively impaired readers, so that they can skim the post and its highlights quickly, and decide for themselves if they want to read more. The only concern I have had expressed by members during that time has been to minimize bright colors, as these can provide too much glare. I understand the CAPS shouting rule and use that judiciously. As I commented, sometimes some things do need to be shouted from the rooftops. Any one that has read my posts since October will readily recognize my attention to detail in using font, colors, etc. to assist in understanding and skimming of the material. I use font and language painstakingly to express myself clearly. Making a public issue of this given the context is an unfortunate way to prevent inflammatory exchanges on this forum. A courteous , matter-of-fact PM or post to apprise me of new forum rules would suffice.
Some clarification of key points
There are a myriad of points that beg clarification, but heres the shortlist, and I think that should do it for me on this thread.
For one thing the CAA is a small organization that has little effect on what other researchers or the federal govt does with regards XMRV - they hardly have the resources to stonewall research efforts.
The best response I can think of Cort is from your own muted words to me.
This is excuse, me - pretty wild.
It takes no resources to stonewall research efforts. All it takes is a quotable quote from someone perceived to be in authority, that is then communicated to an audience that might accelerate or slow down promising XMRV research. Think pharma companies. Think all the currency that the international press got from the 3 Negative Papers byline. It is impossible given the avalanche of negative press that XMRV research was
not delayed.
Fact: the Scientific Director of the largest national ME/CFS patient organization in the world provided lopsided critique which was pounced on by influential media such as
Pharmaceutical Executive to fan the flames of controversy around the
Science XMRV paper.
Throwing down the glove to the Science team and particularly the WPI is the message Pharma Exec got. Their words, not mine.
A reciprocal challenge
Now Im going to put the onus on you Cort. Prove to me that Vernons words did NOT negatively influence or delay promising XMRV research. That the unchecked hundreds of internet posts and media reports on the 3 negative studies
did not cause damage. Prove it.
Thats right. You cant. At least you probably cant right now. But just wait. Mark my words: if XMRV does prove to be it, abundant stories will come out of the woodwork just as they did in the AIDS saga of the band playing on. And the last thing we want is for our largest patient association to be part of that band, whether in a major or minor role.
So the very
possibility that Dr Vernons injudicious words caused delay in XMRV research progress is unthinkable. And thats why its so important for all the CAA members to be so squeaky clean and transparent, and indeed abide by the Boards edict on impartiality. And thats why its so important for them to recognize and address the very real concern in this community about historical bias.
Caution is not the issue: judicious critique is
For another, Dr. Vernon's cautions were reflected by many other ME/CFS organizations and researchers and the CFIDS Association BioBank's first study is to do a replication study of XMRV.
Caution is not the issue. At no point did I say that other organizations were not expressing caution. Nor did I imply that caution would be inappropriate. My point has nothing to do with caution, and everything to do with
balanced caution. What struck me and indeed legions of patients (eg., see V99s post #32) is that Dr Vernons critique of XMRV research was so imbalanced, disproportionately against the
Science work, particularly when there were so many gaping holes (think Guatemala sink hole:
http://www.laht.com/article.asp?ArticleId=358139&CategoryId=23558 ) in the work across the pond. A disconnect in logic and critique. Why the imbalance? Justinreilly is absolutely right that,
What should be presented is the truth exclusively (accuracy as the board did direct Dr Vernon to pursue.)
My request to the CAA for constructive redress
My request for constructive redress by the CAA is very reasoned and very simple:
please give us some indication that you recognize the difficulties of imbalance in the early months and some assurance that the CAA will follow the boards edict of impartiality in aggressively pursuing and investigating XMRV research. Ignoring the elephant in the room by obliquely referring to
what started as a controversial finding as if the CAA had no role in perpetuating the controversy is neither productive nor constructive. And Dr Yes is absolutely right that it is moot whether this was intentional or unintentional. The damage was done. The gauntlet thrown.
Thank you to Jspotila
Jspotila has done a lovely job of rising to the occasion, and starting to turn this ship around. In her post #27, she uses an appropriate and professional tone, acknowledging that we may disagree, without rancor. And she itemizes productive steps that the Association is taking. And I heartily thank her for that. While I do not believe the Association has power over NIH and CDC funding decisions, they
do have influence, particularly if possibly intemperate comments are seized by the media, as they were by
Pharma Exec. The CAA
must remain vigilant about this danger. But Jspotilas tone in that post is clearly one that is building bridges, not attempting to humiliate or intimidate candid critique. Thats what I seek, and enormously appreciate. I get the sense that Jspotila is
listening with her mind and heart, not just reacting with her amygdala.
A double standard
And this is where Im calling you on a double standard on inflammatory language Cort, so fasten your seatbelt. From post #21:
Despite your ardent sleuthing it turns out that it (my Scandal at the BMJ series; and submission on behalf of ME/CFS patients, of a formal complaint to the BMJ and the UK Press Complaints Commission) was all for naught. As you may remember the WPI found that two out of the seven samples tested from the Kuppeveld group were positive for XMRV; ie the fact that that group demonstrated the characteristics you appointed out apparently made no difference to the study results; ie Dr. Vernon turned out to be correct in that instance.
Unseemly Schadenfreude
I would point out that this is nothing short of Schadenfreude (
http://www.google.ca/search?num=100...ude&sa=X&ei=wvMJTLKjKJK-Nt6QwLUE&ved=0CBQQkAE ). And misplaced Schadenfreude, I would add. Shame on you Cort, for sneering at a fellow patients meticulously researched evisceration of the van Kuppeveld article and at the 29 page submission on behalf of this maligned patient patient population to the UK Press Complaints Commission. A prodigious effort, I conducted at great personal cost (look at the posts on my crash afterward), that you so tastelessly and spitefully belittle. There is no other way to describe your stooping this low, and I challenge you to take this criticism to heart. My
Scandal at the BMJ critique not only illuminated in detail the many the gaping holes in the BMJ endorsement of severely flawed XMRV research (and no, Dr Vernon was not correct in missing this opportunity to expose the weaknesses of the Vercoulen paper) but it also now has a public record of protest with the UK Press Complaints Commission, not to mention with Fiona Godlee. Which will be handy if (and I believe when) XMRV is proven as causal in Canadian criteria ME. And Im proud of that. Furthermore, my efforts uplifted scores of patients, desperate for some sanity in the long sordid history of cohort obfuscation in ME/CFS research. Just look at the feedback (
http://www.forums.aboutmecfs.org/sh...J-s-XMRV-CFS-Research/page2&highlight=scandal ). You know the stats on suicide in this patient population. And if my all for naught initiative prevented one patient from sinking into despair even for a short while, then I will have succeeded.
I would also point out to you that a sample size of 7 is hardly a platform on which to project epidemiological statistics. You know that full well, and that is why I am calling you on your own inflammatory posting. With such a small sample size, it is equally possible that those 2 positive samples were emblematic of the ~4% of healthy controls positive for XMRV. And it is also possible that a few early-stage ME patients (i.e. with XMRV), able to tolerate CBT/GET might have been in that van Kuppeveld cohort. I am embarrassed to see your abuse of statistics to intimidate and belittle my efforts to accelerate the truth in XMRV research. My
ardent sleuthing all for naught. From a fellow patient, much less this forums leader. Shame on you.
I am proud of three things:
a)I will not be intimidated by a boorish attempt at humiliation, under the guise of preventing inflammatory language; and
b)I stand up for what I believe is right, and for evidence-based science and actions. I will forthrightly critique any person that I believe to be standing in the way of swift evidence-based medical redemption for this ME/CFS population.
c)I make no apologies for challenging you on your own liberal inflammatory language in the past several posts and indeed whenever you feel the need to put someone in their place. In these last several posts, you have demonstrated your facility for bullying, belittling, and abusing forum members. And for applying a glaring double standard in inflammatory language. I challenge you to take your own medicine. Show some integrity, look in the mirror, and follow your own advice. And join me in the penalty box. I dare you to apply this standard to yourself.
It is a sorry reflection on your leadership that you would descend to this level a personal petty attack to get that last jab in. That you would ascribe epidemiological significance to a sample size of 7 in a flimsy attempt to humiliate a fellow patient. That might work for other patients bless their cotton socks, and my heart goes out to more vulnerable patients at the receiving end of your freewheeling inflammatory language. But I am calling you to the mat on this double standard.
Lest you need a reminder, some examples of your inflammatory posts are in order.
Some examples of this double standard are in order:
From your own words to me:
This is excuse, me - pretty wild. Have some humility!
Your stated intentions
Again, its totally fine to critique the CAA but we're trying to get away from really heated language. Thanks
From your heated PM to me today:
Really - is that an accurate statement - that the CAA is 'stonewalling' XMRV research? Really?
From your post #22 to Wildaisy
Please!!!! Did you read what I said? Did I say ANY (shouting) questioning of the CAA is 'inflammatory". What did I say?
Shouting. Intimidation. Belittling. Rash emotionality. Knee-jerk spitefulness. Come on Cort, you too can do better. I hereby throw down the gauntlet.
Join me in the penalty box
Join me in the penalty box. I challenge you to for once resist the temptation to fire off another heated PM or post to put someone in their place. I challenge you to not post for
at least 24 hours when you are fuming at independent thinkers who dare challenge your biases. Like now. I challenge you to look in the mirror. Consider that in these last posts you have exemplified a glaring double standard in inflammatory language. I challenge you to show some insight, and remove yourself until you have cooled down, so that you can indeed turn the PR forums into something to be proud of.
And I dare you to leave this post up as a reminder that everyone is subject to the forum rules.
Including you..
Or is this the truth about the Phoenix Rising forums,
All animals are equal, but some are more equal than others.?
You have so many things going for you Cort. You have achieved so much. But I will not stand for your abuse or your double standard in moderation. Put a lid on your emotions, and start to exemplify the values that you espouse. Now come join me in the penalty box. I dare you to stay in it for at least 24 hours. Me, Ill be in hospital.
You got one thing right:
Please tone the rhetoric down and stop using such inflammatory language