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"We Are Not Alone" on CFIDS Assn web site (by Suzanne D. Vernon)

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by ahimsa, Jun 3, 2010.

  1. jspotila

    jspotila Senior Member

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    The wikipedia entry is referencing the public awareness campaign funded by CDC. The Association competed for that contract, and the performance (and funding) of the contract was spread over several years. You can read a little more about the contract in the Association's FAQ here: http://cfids.org/cfidslink/2010/010607.asp#3s
  2. jspotila

    jspotila Senior Member

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    I can't speak to all your questions about Cooperative Diagnostics, John, but the company has been discussed in a number of threads in this XMRV section of the forum. However, I can answer that the CFIDS Association has no relationship with Cooperative Diagnostics.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    CAA's Balanced Misrepresentations

    I agree with Dr. Yes on all points and Parvo on almost all. My guess is that Dr. Vernon is not trying to 'stonewall' research per se, but her comments certainly give cover to the concerted attempts of Wessely, BMJ, van K, Fauci at NIAID and the other usual suspects to oppose and muddy the science on ME and oppress patients. This is clearly unacceptable in my view.

    I am a little miffed at Jennie's expression of offense. Dr. Vernon does not seem to be able or willing to execute her job competently. At core, her job is to help ME patients (obviously in a way consistent with good science). If she is not doing this, she and Jennie shouldn't be deeply offended if someone points this out. And if she can not or will not do her job she obviously must be replaced.

    The tone of Dr. Vernon's writing is disturbing to me. It's filled with Wessely-style loaded words that seem intended to steer the reader into the feeling that WPI is unreliable and that, all things considered, XMRV may be a red herring or not that significant. For example, the use of the word 'fundable' in the passage stating that if XMRV is shown to be associated with ME that ME would be 'fundable'. It may seem like nitpicking, but use of loaded words like this is very detrimental to us. Of course, on the merits, ME research is eminently fundable regardless of XMRV, it just isn't funded and these are two very different things.

    I will go further than Parvofighter in saying that i think it is a serious mistake for the board to direct anyone to present a 'balanced' position on anything re ME. What should be presented is the truth exclusively ('accuracy' as the board did direct Dr. Vernon to pursue).

    Being balanced sounds reasonable facially, but it seems that the intention and/or effect of this is to balance the view of WPI, Ruscetti, Silverman and educated patients on the one hand with the serious lies of Wessely, van K et al. on the other hand. A balancing of the truth and serious lies results in the presentation of moderate misrepresentations as a middle ground. A balance between science and lobbying for insurers is inappropriate for a patient org.

    At the October CFSAC meeting Dr. Coffin said that based on the information then available, his opinion is that XMRV probably causes ME, but that it is far from proven. This seems to be a rough consensus among educated patients and professionals (excluding charlatans). This is the sort of message CAA should be communicating.

    Cort- XMRV and ME research is being funded, but not at all by NIH. This is criminal. This research should not have to be exclusively funded by patients. This is axiomatic.

    We should not have to go to the back of the bus!!

    Jennie- the NIAID grants you cite look same old same old tepid and psychogenic oriented investigation. Note that one of the grant descriptions mentions 'at least four million' ME sufferers in the US. Obviously this means they will be exclusively using Reeves criteria.

    This lunacy and persecution must end now!
  4. Cort

    Cort Phoenix Rising Founder

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    A hard hitting post, Justin - but presented in a reasonable fashion; thanks! You believe that Dr. Vernon's comments provide cover to Wessely, Fauci, White, etc. people who believe CFS is a behavioral disorder and would like to suppress research into the physical causes of the disease. Strong stuff

    I realize that you're referring to past documents as well but this is the document of the moment. In order for her comments to provide cover to the behaviorists she's going to have to disavow, at least to some extent, the physical cause of CFS. Let's see if her latest article provides ammunition for a behavioral interpretation of CFS.

    Lets see if she's trying to give both sides equal time as well.

    She starts off acknowledging that many infectious agents have been implicated in CFS and that chronic diseases like CFS can be caused by pathogens.

    She goes on to note that most researchers don't realize that infectious agents are probably at the heart of many diseases like CFS.

    She notes the XMRV paper and then states that if XMRV association with CFS is confirmed then the field of CFS research will be transformed from a backwater really into 'an intense and fundable' area of research. Not only that but that researcher will start to look at other 'immune mediated syndromes''; (think irritable bowel syndrome, fibromyalgia, interstitial cytisus, etc. ) will new eyes - ie they will start exploring the role pathogens play in them. (This is hardly the kind of stuff Wessely is looking for!).

    Next she brings up the idea that XMRV is kind of all over the place but, like other viruses in CFS, is expressed in them because of their immune problems. Why do these immune problems happen? She doesn't know but she's clear that ME/CFS systems are out of balance and that's what's may be causing thes pathogens to flourish and then she puts CFS in the same realm as chronic inflammation, autoimmune disease, cancer - not depression, PTSD, anxiety etc.

    [/B]

    Then she states that if XMRV is confirmed then the usual array of comprehensive studies will begin. Included in those studies will be studies how XMRV and other pathogens effects the body ie causes the many other abnormal problems in CFS (the ecosystem), HPA axis, cardiovascular system, nervous system.....

    I don't see Wessely being indirectly supported. I see nothing but a focus on physiology and particularly on viruses and pathogens.

    I ask you very plainly - what is the matter with this paper???? I see a researcher saying pathogens and infections are very likely the cause of CFS and we need to get more researchers to study them.
  5. Dr. Yes

    Dr. Yes Shame on You

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    Hi Cort,

    I meant that Parvo didn't just come in lobbing accusations without providing an argument s/he felt could substantiate them. That argument could then by analyzed and criticized by other posters. Parvo has provided a much more substantial criticism of Dr. Vernon's statements elsewhere on this forum, as well.

    I already gave my interpretation of what Parvo meant by stonewalling research, FWIW. I understand that 'stonewalling research' could be considered a 'heated' or 'inflammatory' comment by some, but it is not by others; to disagree with it is one thing, and is part of a healthy forum debate; to suggest that such comments be censored it is not.

    I understand your point, Cort, but still don't see how the forum guideline against inflammatory language towards other posters has been expanded to the include outside organizations or researchers. For an advocacy forum - a patients' advocacy forum - to engage in such self-censorship in the middle of a battle is self-destructive.

    I believe it was Dr. Bell, and others, who said that. And I agree with Bell that it had not been getting enough; hopefully that will change now. The concern many had about Dr. Vernon's public statements is that they reinforced, rather than countered, what was an overtly political strategy to impede research into XMRV and CFS by Wessely, McClure, and Van de Meer, at a time when it was critical to attract funding. Re-read Dr. Bell's letter, or Annette Whittemore's CFSAC testimony, both of which shared the same concern many of us had about the political struggle to discredit or bury the WPI findings... the political climate was obvious to a great many of us; why wasn't it to Dr. Vernon and the CAA? In that political reality, any negative statements would only add to the negative spin being promoted by Wessely and others, and thus to the concerted effort to discredit the WPI study and "close the spigot" on funding. Fortunately for us, the implications of the WPI study were far-reaching enough to overcome this early push, and have been helped by the recent German study. But it was a rather fragile situation at the time, and the role of an advocacy group is to promote all potential avenues available to us, not publicly criticize them.

    Gotta rest.. can't answer on this thread anymore. I hope this clarified what I was saying.
  6. parvofighter

    parvofighter Senior Member

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    Join me in the Penalty Box

    Please tone the rhetoric down

    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.
    The best response I can think of Cort is from your own muted words to me.
    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
    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:
    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:
    Your stated intentions
    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
    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:
  7. Cort

    Cort Phoenix Rising Founder

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    How a long list of XMRV studies is irrelevant to the question of whether XMRV research has been 'stonewalled' is beyond me. We've always had this list - it went up on my website very quickly. Dr. Peterson stated from the beginning that XM RV was too big for the WPI - that what need to happen was for the rest of the research community to pick up the ball. I suggest that they've done that in spades. If research efforts were being abandoned, etc. you would have a point but we just had three new studies announced this week on top of the 20 plus other studies that have been going on. The research community is not stonewalling XMRV research Nathan and its doing anything but stonewalling it - its engaging in it very aggressively!

    Pharma companies and researchers are not going to not research XMRV because the Research Director of a small Patient Support Organization wanted more answers about that cohort. Can you imagine a Pharmaceutical Company with its hordes of PhD researchers basing its decision on what someone from the CAA says? You have to think about what's at stake in a study. These studies cost hundreds of thousands of dollars if not more. Participants don't enter into or not enter into a project costing that amount of money based on how an online journal Pharma Exec characterizes Dr. Vernon's comments. They enter into those projects after careful analysis based on the science not a reporters comments in a popular journal!

    Its remarkable that after three negative studies that the response is still so strong; XMRV research is alive and well in the research community Look at all those studies going on.....
    Almost all the research is not being funded by patients. There are only two studies that I know of - the CFIDS Association study and the Invest in ME study - are being funded by patients. I think the Klimas study is supported by patients as well. The NCI study, the CDC study, the Light/Bateman Study, the Montoya study, the Joliceur study, the Tyrrell study, the Abbot and Emory studies, none of the reported studies, Columbia study, Hemispherx study, Bannert study, etc. are all funded by researchers. Dr. Peterson stated that the WPI needed the research community to pick up the ball and they have.


    It also ignores the fact that Dr. Vernon has made many positive comments about XM RV as well and, again, mistakes caution - which I think at this point many people can agree - is probably justified.

    Stonewalling: deliberately create delay: to create obstructions or employ delaying tactics,

    is a very strong term. It connotes deliberate attempt to muzzle a project. Please show me where in that paper there is any indication that Dr. Vernon is doing anything but trying to further the research into infectious causes of CFS including XMRV?

    Your comments also demonstrate how sensitive we can get. Dr Vernon's paper was an endorsement of the idea that pathogens play a significant role not only in chronic fatigue syndrome but in other controversial diseases. It was a 'shout out' to whoever reads it that pathogens - which we all have thought play such an important role in this disorder - desperately needs more research. I went through that article step-by-step. This is an article that should be cheered by CFS patients everywhere.

    Yet it was greeted with your very heated post, and Justin's comments that Dr. Vernon is incompetent, etc.

    I ask you again - isn't that what you want to see in ME/CFS researcher? It seems to me that there's disconnect here. We do desperately want more research into the infectious causes of CFS do we not?
  8. V99

    V99 *****

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    My concern would be whether Vernon will continue to use the principles she began laying out when the first negative paper was published, or will she switch, once again, when another negative study is produced. She does appear to alter her view of XMRV as each new paper comes out, which would be a good thing, if the principles would not also have to change in order to accommodate this. I'm just asking, what makes her change her mind so often?
  9. lansbergen

    lansbergen Senior Member

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    I think Suzanne D. Vernon tried to explain but using the word metagenome is confusion.

    Metagenome is all the genetic material present in an environmental sample, consisting of the genomes of many individual organisms.

    Phenotype is genotype plus milieu.

    We live in symbiose with micro organism

    Our bodies are complex ecosystems influenced by physical and biological factors from inside and out. As with any ecosystem, a balance of these factors is required to maintain good health.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think mirroring is silly. Please feel free to repeat this back to me. : )

    That said, thanks for the conciliatory words.

    Dr. Vernon did say some good stuff in this post as you note later in your post. I agree she isn't presenting a psychogenic explanation here. But even here there are some things, as I mentioned in my post, mostly in reference to agreeing with what Dr. Yes and Parvofighter have said about the post, that I think clearly make it much easier for Wessely, McClure, etc. to get away with their nonsense. This is because of what she said, her tone, choice of words and what she didn't say.

    This post is certainly better than the one on the Dutch study. I am still unhappy that she has not retracted her comments on that study and also not come out strongly and personally against the Reeves criteria. She is in part responsible for that outrage which is still damaging us and she needs to do her part to clean it up.

    Ok, you're right; I stand corrected. Let me amend what I said to state that CDC and NIH's failure to fund extramural research on XMRV and ME is criminal. We all know the quality of and motivation behind CDC's internal studies. Their study plan calls for testing the original cohort, but also Reeves criteria patients and other cohorts. Unacceptable.

    I don't follow the science as closely as many here and don't know enough about science generally. I am glad to hear there is an NCI study, I didn't know about that. NCI has been blessedly unbiased on ME.
  11. Cort

    Cort Phoenix Rising Founder

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    Thanks Justin,

    I understand the upset that the CAA has taken a more cautious stance towards XMRV than many people would wish but I am very wary at inflating that caution into more than caution.

    Dr. Vernon is clearly very interested in pathogens and their effect on CFS; she thinks they probably play a major role in this disorder - and the research the CFIDS Association is funding confirms that - as does her latest article.

    I don't know why Dr. Bell came out with his article - there are clearly lots of XMRV studies ongong - but I assume it had to do with the WPI - not the rest of the field. I don't know what the CAA can do about that; they have money problems of their own.

    They're certainly trying to get more funding. Their staffer spent two periods recently up on Capitol Lobbying for research funding. They co-founded the Overlapping Diseases Alliance - in order to build up clout on Capitol Hill and get more funding for CFS and other diseases. Thats not XMRV specific but it can only help with funding for XMRV and other pathogens.

    As Dr. Vernon, said though, if the XMRV finding is validated then XMRV really won't need any help. The research community wants to find this bug and if they do then we're off to the races - there won't be any problem getting funding. We have over 20 studies going on - only one of which has gotten any federal grant funding! They're pulling the money out of their cookie jars to study this thing. All they have to do is find it again in CFS patients!
  12. Ecoclimber

    Ecoclimber Senior Member

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    How the System Really Works: Course 101

    Ok Let's get real here folks enough is enough!

    If you guys want to sink your own ship go ahead because you are certainly doing a great job at it. But be aware of this fact. There are a small group of dedicated people unbeknown-est to you, WORKING and I mean really WORKING tirelessly behind the scenes without any one's knowledge to secure financial support and funding to find a cure for ME/CFS. I want you to know that all of the organizations lambasted by some in this thread including Cort's forum mentioned in this thread and many others are very small in number and size and are dependent upon many dedicated volunteers who want to find a cure for ME/CFS. Opposed to these organizations, are mega corporations and lobbying groups. So let me throw some figures out to you.

    THE FACTS:
    The amount of research being conducted for ME/CFS and Fibromyalgia is a little over $5 million dollars. That is laughable. It doesn't even pay for the light bills of some institutions. Research for HIV receives over $1 billion dollars. MS $200- 300 million dollars for research. Breast Cancer 400 -600 million dollars for research. So you see what level the ME/CFS group fall into....nil. Besides, the infinitesimal research money available leaves no real money for promoting awareness and for lobbying. Organizations arrayed against the ME/CFS are the APA who provides $350 million dollars toward the support of various elected officials on key appropriations committees. The insurance industry provides $400 -500 million dollars in lobbying money through PAC and other organization and through key officials to effect legislation beneficial toward their industry. There is no way that the ME/CFS has deep enough pockets to match those organizations. So a strategy has to be developed to counter the negative impact that these corporations have toward research into ME/CFS and the social policy agenda.

    In the UK, well the UK is another animal but against them is one of largest insurance companies in the world UNUM who funds a lot of money for the psychobabble research into the Wessely School of CBT thought on ME/CFS. This is the world of reality that we are facing in this fight for a cure.

    However, I will tell you right up front that when members attack one another because it doesn't fit into their agenda criteria, their time line or attack other organizations who are fighting for a cure outside their mainstream of thought, it does a disingenuous service to all these dedicated organizations. You are not privy to what goes on behind the scenes and what it takes to make small steps to open the doors to be heard. United we stand, divided we will fall.

    Over the past year, we have made great strides concerning the awareness of ME/CFS. However, if the controversy continues to wage over issues that are not grounded in the results of factual, credible and valid research studies, then you are hurting yourselves, other organizations and researchers in finding a cure.

    Just last weekend people were talking about hyperventilating if the rumored CDC Press Release proved to be negative. The mantra was pass the paper bag around, I can' stand the tension. It just adds fuel to the psychobabble community that we are a bunch of psychotic and neurotic psychosomatic individuals.

    Because of the undue controversy surrounding xmrv, I had to put on hold for now from approaching a foundation of which I am a member of to secure a large amount of funding for research into xmrv, ME/CFS. Foundations will not fund controversial issues or programs.

    I suggest that everyone take a deep cleansing breath and reread and I mean really reread what the article that Cort posted on this forum Virologists on XMRV: The Goff/Raccaniello Talk. Read the section on Politics middle way down the page, then reread it again. This is the information that I have been receiving from top researchers, virologists and from other key organizations around the country. They share the same sentiments. http://www.forums.aboutmecfs.org/content.php?98-Virologists-on-XMRV

    The bottom line is that everyone wants good research and at this time, we must wait and not speculate one way or another without any credible research to validate our personal assumptions or expectations. There is more going on behind the scenes then most people are aware of because at this time, it is the best strategic move.

    There is no better place that I have found for the latest research and advocacy then this forum and I would hate to see it dragged through the mud by scurrilous comments from some.

    I have extended enough energy on this but will follow up more on my other post.
  13. What a unique post that was.

    You seem to be saying that patients are sinking their own ship by then suggesting we sink our own ship and call for a life boat - whilst drowning.

    An interesting concept, but not very helpful as then patients would be silenced.

    As far as I am aware, patients are patients and are thus not part of any 'controversy'.
    (Something is only 'controversial' if it is stated in the media as being so by confused journalists).

    Perhaps the people to be frustrated at are journalists who are making CFS controversial - rather than telling us patients we are hurting ourselves by discussing XMRV or anything at all it seems.

    You are obviously far too intellectual and capable to be discussing XMRV and research with the likes of us. It is sad to see you so upset. Perhaps take a vacation as soon as possible.
  14. gracenote

    gracenote All shall be well . . .

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    Ecoclimber,

    I feel like you are lecturing me and telling me how I need to think and behave. It you want to influence me, I suggest you find a more conciliatory tone. And I don't need anyone telling me this:

    The psychiatric community is wrong. We do not have to adjust our behavior so they won't think us "psychotic" "neurotic" and "psychosomatic" that is their problem, not ours.

    If we want to speculate, hyperventilate, and pass the bag around, I see no problem with it. We're actually showing ourselves to be human, just like everybody else, after all. I would appreciate not having the threat of being told I'm acting "crazy" brought to me here where I come to converse, discuss, complain, find good information and camaraderie. If we can't be ourselves here, where oh where, please tell me, would such a place be?

    Someone please pass me the bag.
  15. V99

    V99 *****

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    Sorry Ecoclimber, I have to agree with DysautonomiaXMRV.

    It's not a good thing to stop people from talking, and speculation is perfectly reasonable and many of us do use credible research to validate our personal assumptions or expectations.

    As for controversial issues or programs, well what isn't regarded as controversial in ME/CFS research, by the media, or psychosocial school? Things will only stop being so, when there is abundant evidence and replication, after replication. It's catch 22.

    By the way many of the researchers you mention, will have had their eyes opened to the real issue's around ME/CFS research. They won't have understood the position the WPI has found themselves in. On the verge of a possible major breakthrough, with whisper campaigns building and accusations flying. Playing the game softly has been tried, we need people who see things through to their logical conclusion, whether it is XMRV is the cause or not. So far evidence has not been presented that should prevent further research into this significant finding.

    I suggest that you need to go back and re-read the speculations of other researchers in the field. There is nothing new being said here, than it is there.
  16. Cort

    Cort Phoenix Rising Founder

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    Easy! Please watch the personal characterizations. Thanks
  17. Robin

    Robin Guest

    So, you say you're privy to researchers and organizations behind the scenes. Can you go more into this?

    The APA is the American Psychiatric Assocation? How exactly are they against ME/CFS, which officials do they "pay" on which committees?

    By insurance industry do you mean 1) long term care or 2) health insurance or 3) disability insurance, which anti-ME/CFS legislation have they "passed"?

    I'm not being disingenuous here, I'd really like to know. This is the first I've heard of an organized congressional lobby against funding for ME/CFS.


    So you're saying an internet message board is causing enough controversy to make a research foundation balk at funding? Seriously?
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Unpersuaded.

    If you don't want to disclose who is doing what 'behind the scenes' and who you are and how you know this info noone can evaluate it. Until then I will assume it's business as usual for all the usual suspects.

    If someone like Dr. Vernon is not willing to publically present an accurate and unbiased opinion on the Dutch study, the Lombardi study and the Reeves Criteria, to which she attached her name, this tells me all I need to know.
  19. dannybex

    dannybex Senior Member

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    The forum is not a private one WildDaisy -- anyone can read any posts, any threads, except for the New Day Private forum.

    I understand people's anger, frustration, and the impatience when it comes to XMRV-related news -- but at the same time, I'm with those who believe it's unwise to keep dwelling on past mistakes, however egregious. The CAA have clearly been listening, and making some changes.

    It's also not good for one's health to hold onto anger. And I say that from experience -- it's of course very easy and natural to become very angry and resentful at the world and at specific people when we've been sick and disrespected by so many for so many years.

    But as the old saying goes: “Resentment is like taking poison and waiting for the other person to die.”
  20. V99

    V99 *****

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    I doubt they would reveal themselves here, it would cause them to hyperventilate.

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