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Suzanne Vernon: "Agency heads are scared to death...if XMRV works out"

Discussion in 'Action Alerts and Advocacy' started by CBS, Feb 23, 2011.

  1. Sean

    Sean Senior Member

    Yes, it is all very nasty stuff indeed. I am afraid UK patients are in for an even rougher ride in the near future.

    Hope certain researchers and clinicians are proud of the part they had in creating this outcome.
  2. garcia

    garcia Aristocrat Extraordinaire

    It depends if its going to be another CAA that just sells us down the river, then that is something we don't need!
  3. CBS

    CBS Senior Member

    The original comment was “Agency heads are scared to death of how the patient population will react if XMRV works out.”

    I think you can substitute the pathogen "XMRV" with just about anything and come to the same conclusions.

    Agency heads and some "advocacy" organizations are scared to death that CFS patients will have the evidence that they've been sold down the road. XMRV would have been the smoking gun. I'm quite sure that it isn't the only smoking gun out there.

    "Agency heads" and others are "sacred to death" that they've screwed up. There would be nothing to fear if they were absolutely positive that this whole thing was just a bunch of "patients" - or at the very least they had done their best and treated the patients with respect (neither of which has happened) and they seem to be praying that they won't be held accountable and that their malfeasance does not come to light on their watch.
  4. citybug

    citybug Senior Member

    I think agency heads should be scared now. We are angry now. The only and easiest thing for them to do is to give the grants for xmrv research. If they just turned around and started working on it, since now there is a solid foundation for research, what could anyone say? XMRv was discovered in 2006.
    Just in case any of them are reading here. Start the research or take your retirement.
  5. markmc20001

    markmc20001 Guest

    I agree with most of your logic Currer. All up to the point that the CDC "took a gamble" that XRMV was not transmissable. That I do not agree with. Considering the CDC is a fedrally funded agency with probably an unlimited federally funded budgets. I find it hard to believe they just "take a gamble". They are scientists. Scientist work with proof to come to scientific conclusions.

    My logic leads me to believe the CDC did all the research and understood completely what XRMV was back into the 1980's, or before. They just haven't admmitted to it. They probably understood that back around the time Dr Lo's mycoplasma patent for biological warfare was granted...

    If people here agree that the CDC wouldn't "take a gamble" then one would have to ask. Why would the CDC knowingly allow a retrovirus to run through the population??

    This is where everybody's mind locks up becasue it is too hard to imagine that our sweet heart government would harm people(the same government that had been actively doing sick research up in to the 1970's on people all over the world without consent. prisoners, hepatitus, syphylus, other unknowing countries, ....).

    The fact scientist must come to scientific conclusions, is why people here have their panties in such a bunch over not getting consistant confirmation over the WPI results. Because the CDC won't acknowledge the science!! THE CDC KNOW'S THIS. They keep releasing dried blood spot stff, or use the wrong primers.

    IT IS THE CDC'S LEVERAGE ON THE COMMUNITY to not verifying the WPI results. Plausable deniability....their game back in to the 1980's.

    THE FDA ALREADY VERIFIED THE WPI'S FINDINGS, with more advanced testing methods to boot! I'm sure these retrovirus testing methods have all advanced tremendously since the late 1970's when retroviruses became the rage during the AIDS outbreaks and research.

    It's difficult to get ones mind around, but the CDC purposely let XMRV run wild in the population... Yep I said it.... How can there be any other logically outcome? Does anybody really believe the CDC "took a gamble"????????? They have been churning out science since the 1980's on this stuff.

    It's the CDC(and UK) who have confused everybody with their public Psych-ops/psychobabble campaign to make it seem like we all have depression. They have confused everybody with the bogus dry blood spot studies, and "might be contamination" studies.

    NONE OF THIS IS AN ACCIDENT. It is a calculated and deliberate campaign that has been going on since the 1980's. Scientist don't make mistakes. They check their work, many times over. Not many can wrap their minds around it being deliberate? Then one would have to come to the conclusion that people are not nice and are lying to us?

    think our governments areb't capable of doing harm back in the 1970's? read this...
  6. Cort

    Cort Phoenix Rising Founder

    Besides the fact that you're breaking confidence with Dr. Vernon... I don't understand what the big deal is. Isn't that what you would think they would think? Of course agency heads are concerned about an outcry. There are plenty of things to take the CAA to task for. Their advocacy can be inept at times - but that's as far as I go. To suggest they are trying to undermine XMRV or the search for pathogens is beyond the pale for me.

    Vernon Conversation - I was there for the hour or so conversation we had with Dr. Vernon and I don't remember that comment at all - which doesn't mean much. I assume it was said - it 'means it simply it didn't stick in my mind at all - no flares went off. I remember other things about that conversation. I remember Dr. Vernon shedding some possible cause on CBS's infectious onset that he hadn't heard before. I remember her talking about how Dr. Lipkin has believed CFS was caused by a virus for many years. I remember her calling him "Ian" and mentioning that she spoke to him. I just don't remember that comment...

    It obviously bothered CBS quite a bit. He asked me about it several times and went so far as to ask Jennnie Spotila about it....we obviously had a very different interpretation of what it meant.

    I suppose the implication is that the CAA is somehow sabotaging XMRV....I actually don't have to suppose that's - CBS's post clearly proposes that the CAA is working to do that. Apparently enrolling an drug company that produces antivirals - Glaxos Smith Kline - and has everything to gain by finding the virus - to study XMRV in a CAA study - is this part of the conspiracy as well?

    Lipkin - Then there's the Lipkin connection. In our conversation Dr. Vernon noted that Dr. Lipkin - whom she knows - has believed CFS may be caused by a virus for 20 years. Not long after our conversation the CFIDS Association was able to convince Dr. Lipkin to be nominated for a 4 year stint on the CFSAC panel. Then Dr. Lipkin was announced to head up the 1.3 million dollar NIH study on XMRV. This too is part of the XMRV undermining?

    (Was the CAA's nomination of Dr. Peterson, Annette Whittemore and Dr. Mikovits to the prior panel more of the conspiracy?)

    Singh - The CAA were also able to convince XMRV expert Dr. Singh - whom CBS knows - to agree to be on the CFSAC panel. These are deep moles indeed. On the surface GSK, Lipkin and Singh have everything to gain from finding XMRV and they appear to be working to do it. Unfortunately they are also quite connected with the CAA and since that organization clearly does not want XMRV to work out - based on CBS's implications - we must assume they are part of the underground movement.

    The Email! - Then there's that horrific email. My god - what a thing. The CAA was not following the European's orgs lead on petitioning the government. Can I ask what happened at that meeting? Did the FDA actually call for a 'ban' on blood donations from CFS patients?

    We are making much ado about the CAA not joining a petition? (and how helpful have those been in the past?) And totally disregarding their very public demands that a blood donation's be stopped? And well as the fact that the issue was resolved to many peoples satisfaction without a petition; ie maybe one actually was not needed?

    To me all of this is much ado about nothing. If the CAA had not pressed for a ban on blood donations....or if they had not gotten an XMRV study going...or if they had elected some flunkies to the CFSAC panel instead two of the top virologists and XMRV experts in the country........That would have called for outcries.

    but a single line in a conversation - that simply said it like it email that had no bearing on how the situation turned out ...that is what we focus on? I'd rather focus on what the CAA does and doesn't do...They screwed up the PACE response - ...I say go after them on that - that's appropriate - not these little quotes. To argue that they are screwing up in advocacy is one suggest they are trying to undermine your and my interests is quite another.

    Record - What record? - Dr. Yes and Justin yesterday dug up some quote from Dr Vernon 5 years ago that bothered them... Nothing in Dr. Vernon's activity at the CAA over the past five years has indicated any reason for concern about that issue. They know that! Her record was posted in the very article they posted on - it indicated there is no reason for concern about that issue.....she is not interested in it...she is not pursuing it...she is pursuing very different types of research - types of research they very likely really applaud...but that doesn't figure into their calculations - I think its the strangest thing.
  7. Cort

    Cort Phoenix Rising Founder

    Do you mean their reports on the PACE trial

    Maybe its this one. I'm not saying this is like fun reading but it does get the point across - if you care to read it. May provide modest benefits but no more so than in other chronic illnesses (ie CFS is not a behavioral disorder - if you don't feel like reading between the lines).

    I get it - they didn't have the kind of responses you or I wanted. It should have been a bolder response...but it's not like they were saying take CBT/GET and get well from CFS.

    It appears to me that their stand on the PACE trial is that it provided only modest benefits, probably mostly to the young and less severely ill, and provided no more benefits than it would for any other chronic illness - which means of course that CFS is not a behavioral disorder; its a chronic illness like any other chronic illness.

    I get that their presentation was pretty piss pour- but I don't have a problem with where they stand. I think its pretty clear. I could have taken the data in their analyses and smacked the PACE trial in the face with it. I would have used bolder language, I would have re-organized it, etc. and it would have been quite effective I think. The point is that many of the points everybody is talking about (not all of them but many) were there.

    So where do you think they stand on PACE?
  8. markmc20001

    markmc20001 Guest

    me who suggested conspiracy

    I'll take credit for interjecting the conspiracy comment linking the CAA to part of some conspiracy. I question everybody's motives at this point.

    I think the distrust of the CAA comes from the history of the CAA. The CAA is repsonsible for derailing Elaine Defreitas's career in the 90's after publishing retrovirus research and writing a book. It is very disturbing the CAA derailed Elaine Defreitas effort to reveal a virus back then. It certainly bothers me alot since I have no idea of how the CAA was founded, what their budget has been, how they spend that money, and who has funded them.

    This is why the CAA bothers me. I'm sure there is a long list of other complaints too.
  9. Cort

    Cort Phoenix Rising Founder

    Where else did the CAA stand on this issue?

    They noted that some people may have been excluded from the trials because of neurological and cardiovascular symptoms; ie the trial might not have reflected the average CFS patients and certainly may not apply to people with neurological and cardiovascular symptoms - something they note that the UK Health service itself has noted.

    They also felt it was important to note that many patients who were too ill were unable to participate in the trials - and thus it did not apply to severely patients.

    Despite the size of the study they pointed out that most CBT trials now attempt to look a biological effects of the treatments and this one did not...which brings into question why not?

    Possibly because studies in other diseases show that CBT can be helpful in reducing inflammation and immune activity. The CAA suggests that if the PACE trial had done this they would simply have shown that CBT simply does in CFS as it does in other diseases - it reduces some immune activation

    The CAA reinforces the fact that the PACE trial was probably simply doing what all CBT trials so - putting CFS squarely in the context of other legitimate disorders.

  10. CBS

    CBS Senior Member

    There's often a striking difference between what comes out of the CAA in comments to media and what they post on their web-page.

    I read that what you posted from the CAA page on February 21st, three days after the "gee I wish 'our' patients had better access to CBT and GET" comment had been splashed all over the world's news.

    No one sees their web-page and no one is going to do a story or a correction based upon it. Why does the first thing out of their mouths (and the only thing the rest of the world hears) sound so limp wristed then days later there's a pdf on their web-page that is primarily for patient consumption that is supposed to make it all better.

    They're horrible at the advocacy game and getting paid a lot of money (in my opinion an unjustifiable amount regardless of what I hear from the CAAs board, which just makes the board look bad) for an organization that does not seem to appreciate that advocates don't get a chance to keep coming back and fine tuning their original message. And why is it so hard for them to get the original message right? Who are they trying to please or are they really that confused about the patients they are supposed to be representing?

    Could the CAA give a two sentence description of "CFS" that captures the experience of the most severely ill ME patients? I doubt they could do it, stand behind it and not qualify it until their original two sentences were completely meaningless.
  11. Cort

    Cort Phoenix Rising Founder

    Finally - medical care for people with CFS simply sucks and much more work is needed to find a way to treat CFS.

    So where does the CAA stand on the PACE trial

    • not very effective
    • when it is effective it's probably usually effective for younger, more severely ill patients
    • may have excluded people with significant neurological and cardiovascular symptoms
    • definitely excluded more severely ill patients
    • therapies work no different in CFS than in other disorders
    • study was too big for the UK govt to allow to fail
    • study failed to provide measures of functionality (ie walking)
    • if they had taken biological measures they would have seen CBT works in CFS just as it does in other diseases
    • the standard medical toolkit is limited and ineffective - more research and better treatment option are needed (ie CBT/GET is not enough)

    Their Duplicity - Now that we know their stand on the PACE trial we can figure out who they are being duplicitous with. Their stand must an indication of their duplicity.....this is tough!!!....because I don't think White or Wessely or the UK government is going to march in lockstep with an analysis that CBT is not very effective and then only in some patients.

    Maybe its the insurance companies as Justin suggested......but the fact that they call CBT/GET pretty ineffective isn't going to wash well there and they do say medical care for CFS really sucks - which does kind of indicate that more research should be done -and who knows where that will lead. Then they are doing the XMRV study with GSK and GSK certainly wants to find that virus...think what a best seller their next drug would be and what a horror for the insurance companies. So they're not in lockstep with the insurance companies.

    They seem to be aligning themselves with a group of people who believe behavioral therapies like CBT/GET are probably only somewhat effective in younger, less severely affected patients, who think we've just got to pursue better treatments and more research because the options are so limited right now.....

    who are those people??? ahh, slap on the's the patients!
  12. Cort

    Cort Phoenix Rising Founder

    So the CAA is duplicitous based on comments in the media - comments that we know only present a partial picture of what representatives of the CAA or any other person being interviewed by the media says... You're also suggesting that the CAA is working in an underhanded fashion to undermine our interests (aka the Hilary Johnson quote) because they produce muddled documents that aren't very effective in getting their point across? Did I get that right?

    (You can see how tweaked I was by those original comments! :))

    I get how disappointing they are to you (and many others and at times to me) but I think a simpler and more accurate explanation is that they're just not very effective in that arena and they need to improve.
  13. CBS

    CBS Senior Member

    I'm suggesting that repeatedly representing only part of the picture to the media raises questions about what they are saying behind the scenes.

    I don't know what they are saying behind the scenes. I do not recognize the disease I am fighting in their public pronouncements and they have lost my trust.
  14. Cort

    Cort Phoenix Rising Founder

    The PACE trial was not covered in the show...

    You would really rather them focus on XRMV (and contamination - because that is the issue right now with XMRV - and that is what they will cover)? I wouldn't! I'd rather them focus on some new juicy completely positive research on CFS.

    It was odd that CBS covered that study. Absolutely it was - but in a bad way? (Are you trying to turn lemonade into lemons?). My guess is that we have a very good friend high up in CBS who wanted a counter to the negative news of the PACE trial. When was the last time CFS was a subject of a Katie Couric spot? This only happened because PACE was big news and they were trying to counteract it.

    Honestly I think trying to get CBS to cover PACE and the Spinal Fluid study - when CBS (not the person) is clearly focused on the one - and will spend a limited amount of time on that one - is not a very 'competent', shall we say, idea. I think the CAA probably did the right thing - they knew what the story was going to be on since CBS (the station not the person) contacted them beforehand.

    Then they encouraged the CFS community to pump up the story that was being presented (not the story was not being presented). Not a gaffe at all - just smart thinking.....

    Do you think the patients put pressure on CBS to not cover the PACE trial? I think they put pressure on them to cover it properly......Now, after you've taken the CAA to task for asking patients to focus on the spinal fluid study (and not cover the PACE trial) - you're apparently happy that the PACE trial was not part of the story. My head is spinning....

    The point for me is that the CAA did the strategic and smart thing.
  15. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    That's great news.

    The reason I think this email is damning is the she is reporting to the Feds that CAA has been "resisting pressure" to recommend that blood donation by pwME be banned is because
    (1) there should be no question by CAA that blood donation should be banned because (a) it endangers the health of the pwME donor (b) XMRV and many other pathogens and suspected pathogens are highly associated with ME and (c) even if these pathogens do not cause ME, it is most likely some other undiscovered virus causes it and (d) the association of ME with cancer;
    (2) it sounds like McCleary is taking the attitude that she works for HHS and is reporting that she is resisting outside pressure from patients. She should be resisting pressure from CDC not patients for whom she works!

    You are right. I am simply saying she should be actively pushing our messages in the media, as she showed she was able to do in that article. She was involved in the Reeves criteria, it is an absolute travesty and since she is working for us she should go beyond making a statement buried somewhere on the CAA website.

    CBS makes what is my central point. it is insufficient to put an acceptable statement somewhere on an inner page of the website, while saying the wrong thing to the media- which is pretty much all that people ever hear.
  16. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    Cort, some of these posts have the sarcastic tone that you would threaten others with banning from the forums if others displayed it. It's getting old for me to be bringing this up with you. Either allow others to do it, don't do it yourself or do not post on PR.
  17. Cort

    Cort Phoenix Rising Founder

    That's not how I read it at all. .Here's one statement from the CAA on their FAQ page on Blood donations. As you can see CAA's reps were part of that group and they were pushing the group internally to produce a blood ban and the group did do that.

    That committee recommended that blood donations from CFS patients be deferred. On June 10th the AABB made the same recommendation

    Here's Kim McCleary's testimony on Dec 10th to the FDA Blood Advisory products Committee. In it she describes a survey the CAA put on earlier in the year to determine how many people with CFS have given blood. They did that in order to give them more push with the very government agencies you just asserted they were assisting.

    If you want to find out more about the CAA's role in the blood donation question check out the URL below. You'll find that contrary to Hillary Johnson's assertion they were actually far more active than any other organization in pushing for a blood ban. A balanced view of the subject would have looked at all their activities and noted which were positive and which could have been done better - but that's not Hillary Johnson does...

    You wonder why I get sarcastic sometimes....Its not buried somewhere on the website. It's on the frequently asked questions page on the website - one of the main links on the website.

    The point CBS makes is that if you make a bunch of statements to the media and the media happens to choose a not very powerful one and doesn't use the others then CBS is going to assume that they didn't make those other statements. I don't that's accurate or fair.

    An no - it doesn't take much digging to find that information - it just takes some digging.

    I'll try and cut down the sarcasm - I realize it just ticks people off.
  18. CBS

    CBS Senior Member

    My point was that making any weak statements to the media when you are representing this disease, can at best be interpreted as being clueless about how the media and advocacy works (strong statements do not require overstating what is known) and at worst raises questions about the possibility that the weak statements were included to appease parties other than the patients the CAA is supposed to be representing.

    I refuse to to accept the argument that in KM's case $170K doesn't buy you much. I'm just starting to wonder about who's buying it because who ever it is seems perfectly satisfied so far.
  19. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    GlaxoSMithKline's VASTLY imbedded with the plutocracy that runs the UK.

    1) As noted in the Wakefield mess, the guy who runs the company who owns The Lancet, was the brother of the judge who turned down Wakefield's appeal (judge didn't recuse himself which is seriously wrong). The brother is also, tada, a GSK exec!

    2) Rupet Murdoch's son is on the GSK board, and las I heard osme years ago, Murdoch's empire owned 300 million of GSK shares.

    3) GSK has been dragged through wrogner for REPEATED vile crap about pharma drugs...go read up on it, it's a LOT.


    lot smore if you go dig.
    thus I wouldn't trust GSK further than I can p*ss upwind in a hurricane! :p
    Yeah, there might be profit...they might also be stooges for the government/others they are deeply inbed with.
  20. Cort

    Cort Phoenix Rising Founder

    I imagine that its people who support the Research Initiative and the Biobank and some of the CAA's successful advocacy efforts...the retention of the CFSAC panel, Dr. Reeves dismissal (which I still think the CAA's critique must have helped with), the new Congressional Fund CFS researchers have to tap into, the webinar program - things like that - there are reasons to support this organization. As I said earlier I would support them for their brain mitochondrial program and the Light studies alone.

    Just their support of the Pacific Fatigue Labs repeat exercise work (they were the sole supporters of that)...would keep me going to for a couple of years because I think that work has changed how researchers do their studies. We are much more likely to get positive results now from all sorts of studies by throwing an exercise component in there.

    Look at the Light study - at baseline there's no different in receptor levels; without the exercise studies they might not have ever thought to include an exercise component...but doing that changed everything....and exercise was not a prominent feature of your everyday study before the CAA funded the Pacific Fatigue labs work.

    While the CAA is underperforming in some very public areas they are performing just fine in others. Two of their researchers have gotten major NIH grants.....that doesn't happen every day....How many new grants on CFS pathophysiology does the NIH fund every hear? 2, 3???? It's a very small number.

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