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WPI and XMRV - Myths, Facts, Questions and Opinions

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Mark, Jun 15, 2010.

  1. Mark

    Mark Acting CEO

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    Although the conspiracy theory that the Phoenix Rising team is biased against WPI and XMRV is patently ridiculous, the idea seems to me to have part of its origin in some failures on the part of this forum over the past 6 months or so. Not failures of the leadership, but failures of the membership and of the WPI and XMRV advocates myself included. My view is that one of the biggest weaknesses of the forum has been the way we consistently fail to summarise and categorise our findings. We often have fantastic and enlightening discussions whenever we engage together in a co-operative spirit and with open minds but sadly we have never managed to get in the habit of summarising and archiving our conclusions at the end of the discussion. Instead, the thread peters out and we move on to the next thread or as has too often been the case, the next crisis

    Nowhere has this problem been more significant than in relation to our investigation of the WPIs Science paper and the subsequent XMRV work. The people who get absolutely fed up of answering questions about the WPI and XMRV based on rumour and disinformation, are fed up because they have answered those questions thoroughly and definitively many months ago, and yet those same insinuations just keep coming up. The frustration for me is that theres a simple solution that never seems to happen: construct a definitive and high-quality FAQ to answer these questions, and when anybody repeats the allegations, point them at that FAQ.

    This has been a crucial failure on our part, and if the information war is influential on the way that science progresses and I think its obvious that it is then I think it is fair to say that this forum could have done a better job at defending the WPI in these matters. We have simply failed to effectively counter the disinformation on their behalf, because we have been too busy arguing and fire-fighting instead of organising.

    This thread, then, is an attempt to carry out that exercise. I will supervise and manage this FAQ myself, and Ill update the second post in this thread with the latest version of the text as contributors add to the arguments.

    This is is also an opportunity to explore a couple of my ideas for initiating and managing threads:

    1. Threads for collaborating on documents. The wiki now provides functionality for that, but members arent familiar with that yet, and some of the same goals can also be achieved through a few simple protocols of thread management. We have done this successfully in the past, where the first post in a thread is updated as members post to the thread to point out errors and enhance the text. That model works, and it could be extended with some simple rules.

    2. Parameters set by the threadstarter. I am not interested, in this thread, in getting into arguments about whether this thread and the above concepts are a good idea. I am not interested, in this thread, in arguing or discussing off-topic or going off at a tangent. I am in a very fortunate position, as moderator, in that I will be able to delete any such posts, and if the thread diverges from its objectives, then Ill do so. Unfortunately I dont think theres any vBulletin modification available to give the same sort of permissions to the starter of any given thread, but there may well be in the future, and I think that could be a very interesting model: for threadstarters to be able to control their own threads. Could save a lot of arguments. Of course, it could also create some, but hey

    OK then: here we goI will sketch out the outline I have in mind, and see what comes back. Please try not to reinvent the wheel: there are already some great posts answering all these questions so it would be much more efficient to gather those responses here and refine them together. And if you havent got anything to contribute right now, feel free to bump the thread if it starts slipping into oblivion
     
  2. Mark

    Mark Acting CEO

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    FAQ: Criticisms of the WPI and their XMRV Finding

    TEMPORARY NOTE: The criticisms below are all IMO completely unfounded and have been comprehensively and definitively debunked here. Once we’ve gathered that evidence together, I will remove this temporary note. :Retro smile:

    NB: The numbers are a temporary ordering for convenience while we construct the list; we can re-order them later...

    1.
    OPINION: This WPI outfit just seems a bit weird to me. I’ve never heard of them before.

    RESPONSE:


    2.
    MYTH: The WPI have broken established scientific protocol by revealing their findings before publication.

    FACT:


    3.
    MYTH: The WPI has irresponsibly encouraged patients to campaign about XMRV before their findings were confirmed.

    RESPONSE:


    4.
    MYTH: The WPI has been irresponsible in the way it has encouraged patients to pay for XMRV tests, even though the relevance of XMRV is, as yet, unknown.

    FACT:
    1. No member of the WPI has ever made a statement asking, encouraging or soliciting ME/CFS "patients" to "pay" for XMRV testing, but has instead encouraged patients to join studies.
    2. XMRV testing will inevitably be offered by some private lab regardless of what any group or agency may want. The WPI released their test in response to the release of a test by Co-Operative Diagnostics Ltd.
    3. Laboratories offering testing will of course charge for testing to cover their expenses.
    4. A significant subset of the ME/CFS patient community is both ready and willing to pay for testing, in full knowledge that the WPI's findings have not yet been independently replicated.
    5. Providing WPI-licensed testing discourages other companies from offering over the internet tests that may or may not be consistent with the WPI methodology for detecting XMRV in ME/CFS patients.

    Dr. Judy Mikovits (Director of Research at WPI) has repeatedly told lecture audiences to wait, and to sign up for studies in order to receive free testing in a controlled environment. Other members of the WPI staff - including Dr. Daniel Peterson, Annette Whittemore and Dr. Vince Lombardi - have also encouraged members of the patient community to enroll in studies until more information becomes available about the virus itself and whether or not the virus is truly associated with CFS.

    Dr. Coffin and Dr. Peterson discouraged individual patient testing at the CFSAC meeting on October 29th 2009, as did Dr. Nancy Klimas in her review of XMRV on November 7th 2009 (read more). Dr. Klimas encouraged patients to participate in studies but discouraged patients from testing privately.

    On October 26th 2009 Cooperative Diagnostics (a private company not associated with the WPI) put out a press release and began offering an XMRV test kit (read more). This move seems to have prompted the WPI to quickly license its research test methodology to Viral Immune Pathology Diagnostics Laboratories (VIP Dx) but Cooperative Diagnostics was the first company to offer a test to the general public.

    On learning of the Co-operative Diagnostics test, Cort Johnson contacted the WPI in an effort to find out whether the WPI would offer testing to the public. He posted this response on October 26th: (read more)

    Two days later, on October 28th, VIP Dx made available on their web site two tests: a PCR test and a culture test. (The testing acceptance wasretrospectively dated to October 23rd, which created some confusion as to who actually made the test available first. (read more ) ). A statement from the VIP Dx web site indicated that VIP Dx were orientating the test to the physician:

    In January of 2010 a new lab called Clongen Laboratories began offering an XMRV test (read more). To date no one has used this lab that I know of and no results are available on their web site.

    Further comments:





    5.
    MYTH: The WPI has a shady connection to VIPdx labs.

    FACT:


    6.
    OPINION: The WPI have undermined their case by linking their findings to the controversial debate about autism.

    RESPONSE:


    7.
    OPINION: The WPI’s poor Public Relations skills have undermined their case.

    RESPONSE:


    8.
    MYTH: The WPI are irresponsibly encouraging patients to experiment with dangerous anti-retroviral medication which is unproven for use by ME/CFS patients.

    FACT: Most doctors - but not all - would agree that antiretroviral therapy is an inappropriate choice right now. So would most professionals. But about 5% of physicians, and 15% of nurses and pharmacists, actually think antiretroviral therapy should be prescribed now, because there are few other treatment options (according to this MedScape poll). And 17% of physicians said they would consider that treatment.


    9.
    MYTH: The WPI have gone too far in interpreting their results to mean that XMRV is causal for ME/CFS, when it may well be an opportunistic infection.

    FACT: From the outset the WPI have strongly emphasised that their results do not imply causation and that further research is required in order to investigate this.


    10.
    MYTH: Several other studies have failed to reproduce the WPI’s finding of an association between XMRV and ME/CFS.

    FACT: To date, there has been no study that has attempted to reproduce the WPI’s methodology. The 3 studies that failed to find an association have all failed to find any XMRV whatsoever, either in patients or in healthy controls. The exact same controversy exists in relation to the association between XMRV and prostate cancer. For prostate cancer, several (?? How many??) studies have found such an association, and (?? How many??) other studies have found no XMRV at all. Of the studies that did report that they detected XMRV, the infection rates found in the general population were 3.7%, 6%, 2%, 4%, … (???). The other studies found no XMRV at all. Assuming that XMRV exists and is found in the general population at a rate of 3%, the probability of valid XMRV tests failing to find any XMRV in 400 (???) samples is 0.000001 (?) %.

    XMRV was first discovered in 2006, and methods for detecting it are in their infancy. There is quite obviously a lot to be learned about XMRV testing, but it is perfectly clear that if XMRV does indeed exist, and exists in Europe (as one German study has confirmed) than the negative studies have quite simply failed to find it. So in fact, no study has yet provided any evidence whatsoever to call into question the association of XMRV and ME/CFS. The 3 negative studies have simply failed to detect XMRV.


    11.
    MYTH: Studies so far suggest that XMRV may only exist in the US and not in the UK and Europe.

    FACT: XMRV has now been detected in Germany in a similar proportion of the general population to that found in the US. Several (??? how many roughly ???) UK patients have sent blood samples to the US for testing and have tested positive by the WPI's methodology. Whatever the WPI are detecting, it is in Europe in similar proportions. It has also been detected in Japan in similar proportions.


    12.
    MYTH: The cohort used for the Science study was not well-defined.

    FACT:


    13.
    MYTH: There were contradictions between the statements made about where the patients in the study came from.

    FACT:


    14.
    RUMOUR: I have heard rumours that there was some laboratory contamination in the WPI’s Science study.

    RESPONSE: I have heard rumours that powerful people with vested interests have been spreading unfounded, unreferenced and malicious rumours about the WPI throughout the scientific community. But I prefer to deal in facts rather than rumours. The WPI have categorically denied this claim. Where then did these rumours originate? And how did this supposed laboratory contamination disproportionately affect only the samples from ME/CFS patients and not the healthy controls - and how did it do so in multiple laboratories?


    15.
    QUESTION: Lots of studies in the past have found associations between viruses and ME/CFS. Those studies never came to anything, why would this be any different?

    ANSWER:
    Many studies have indeed discovered increased levels of various viruses in ME/CFS patients. This new research, however, associates a retrovirus with ME/CFS, and the strength of the association is greater than any of the previous findings with viruses.

    Retroviruses attack and undermine the immune system, rendering infected individuals more vulnerable to infection with viruses as well as causing further immunological abnormalities. Since both phenomena have been reported in numerous studies of ME/CFS patients, the finding of a retroviral connection naturally suggests that XMRV may be the "puppet master" that opens the door for these other opportunistic infections.

    So far from being thrown into doubt by the previous suggestive findings that never led to a complete understanding of ME/CFS, this discovery could potentially explain those other findings.

    Evidence suggesting the association of ME/CFS with retroviral infection has been reported before, in the 1980s in both the US and Australia. Those early findings were not reproduced, but since retrovirology was a relatively young science in those days, it is entirely possible that the significance of those results was not fully appreciated at the time.

    Just because previous viral associations have not led to a crucial breakthrough is no reason to believe that this latest finding will not do so either. Indeed by this logic, one could argue that previous research has failed to explain ME/CFS, so why would any future research explain it? One day, ME/CFS will be understood - and this finding is one of the most promising leads we have ever had.
     
  3. Mark

    Mark Acting CEO

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    Placeholder

    Just in case we want a couple more sections...
     
  4. Mark

    Mark Acting CEO

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    Placeholder

    Just in case we want a couple more sections...
     
  5. George

    George waitin' fer rabbits

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    I'd like to take the section on VIP/WPI testing. . .


    The WPI has been irresponsible in the way it has encouraged patients to pay for XMRV tests, even though the relevance of XMRV is, as yet, unknown.

    I'll comb through the threads as well and try to get this up tomorrow.
     
  6. Lynn

    Lynn Senior Member

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    Hi Mark.
    I understand and admire what you are doing in this thread. Debunking the negativity is important. I just wonder if it wouldn't it be more helpful to state the phrases from a positive stand point and then prove them. Or perhaps turn them into questions. I don't think you want an FAQ with a bunch of negative statements answered. I know for myself, as a believer, that it was difficult for me to read the term "The WPI has been irresponsible..." over and over again. I don't want to plant that message into peoples' heads.

    Lynn
     
  7. Mark

    Mark Acting CEO

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    Hi Lynn.

    I take your point, I know a lot of people may see it that way. I'll ponder the possibility, and of course anybody who lifts 'my' FAQ will be able to change the statements to questions and use it elsewhere. But I basically think that doing that would weaken the value rather than strengthen it, so I think I'd only support a halfway house solution - maybe the 'questions' format could work. If you or somebody else wants to come up with a few examples rephrasing the questions/criticisms then I'll see what I think. But as I said in post #1, I don't want to get bogged down in arguments about that sort of thing really.

    The point you're making is an example of a fundamental difference of opinion that has caused - and continues to cause - a lot of division here. Indeed I could even suggest that these two different ways of thinking are the fundamental problem that has divided us recently. A lot of people do not want to ever read anything here that is 'negative' to their beliefs, and don't want us to reproduce the 'arguments of the enemy' here. Whereas people with a different mindset will see that as a form of book-burning and cultism and will dismiss anything said by somebody with that sort of approach. My personal view is that the attitude of denying open debate is a catastrophic error that fatally undermines any argument, and I suspect it is rooted in a lack of confidence. (Please don't take that personally, I'm probably criticising considerably more than half the population of the earth there!).

    Wrapping ourselves in cotton wool does us no favours at all. I do read ERV, and Bad Science, and other sources of info, from time to time. It's crucial to maintaining perspective - and one thing they would heavily criticise is our sometimes closed approach to debate. If you don't confront the "enemy"'s arguments head on, really you're just running away from the argument. You weaken your ability to debate the issues, and you don't get chance to expose flaws in your own reasoning.

    That's a much wider point than what you're saying here, of course.

    I know you don't like to read those things, and I'm sorry to anybody else who's made uncomfortable by reading that list of criticisms. That's why I put the disclaimer in red. If you're still feeling uncomfortable, can I suggest you re-read that disclaimer a few times, then cheer yourself up by looking forward to the finished document?

    Not making statements like these on this site is not going to protect us. We can't stop other people making those statements, what is important is that when they are made, they are challenged effectively. I really don't think anybody would read such an FAQ and read the questions but not read the answers. And I'm afraid, those comments are all being made in the outside world, in the research community and on science blogs, in a terrifyingly ignorant and completely uninformed fashion by people who have only looked at the subject very superficially.

    I'm very mindful that hearing them repeated here may be upsetting to some people, and that some people who only come here (and not elsewhere) for XMRV information may have never heard any of those criticisms before. So I can only suggest comforting you all by emphasising: these criticisms are all a load of crap, and we are going to prove it! :D

    Having saidall that, I will ponder your idea of rephrasing as questions and consider whether that can be done without compromising the aims of this project; it begins to seem to me that might work OK...
     
  8. julius

    julius Watchoo lookin' at?

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    This is important work. Very good idea. I will go through and try to do my part.

    If anyone (George??) want to give me a list of threads and what info you are looking for I will happily work as an 'assistant'. Sometimes with my fogginess I work better if someone points me in a direction, rather than having to find the direction myself.....if that makes sense.

    Anyways, I'm here to help with this project.

    PS: regarding how the questions should be phrased....try to think of how people would search the question in GOOGLE and phrase the questions accordingly

    PPS; should there be a question about the previous viral/retroviral theories?
    ie; Haven't there been othere viruses/retroviruses 'discovered' to be the cause of CFS in the past?
     
  9. Mark

    Mark Acting CEO

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    Simleys and hugs are the only medals I'm aware of; that's good enough for me. Tummy-rubs seem to work for George. :D

    Since you agree with rephrasing as questions, I'll take that vote on board. I don't want to artificially weaken the opposition case in any way though; I want this to be an honest appraisal, and a response to the strongest and most robust criticisms.

    How would you rephrase "The WPI seems a bit weird to me" though? "Is the WPI a bit weird?" doesn't seem to work. I've read that comment (or something similar) on another blog, and I had been more thinking in terms of quoting some of those comments and sources directly rather than watering them down. Changing that one to "Who are the WPI?" would be running away from the argument, and denying ourselves the opportunity to expose how narrow-minded that sort of comment really is. "The WPI seems a bit weird and suspicious" just totally exposes the prejudices of the person who says it. Especially when it's a scientist saying that, who ought to be ashamed when you highlight to them their double standards, and the way they would discount such irrational arguments based on iintuition and "gut feeling" in their opponents, and call for evidence.

    The harsher and more unpleasant the opposing argument is, the more energy it contains that you can use against the person saying it. Think in terms of martial arts: use your opponent's energy against them. Hope that illuminates my thinking on these matters...but if that approach is too much for the majority here, I guess I'll respect that and soften the criticisms as far as I can do with integrity.
     
  10. Mark

    Mark Acting CEO

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    Excellent: thanks!

    Using Advanced Search to find some of the relevant threads would be a good first step. Anyone can do that: just look through the XMRV stuff and post links to the useful threads here. Also the XMRV section. Search on the most relevant terms should throw up a few good things. Also take note of the dates: some of the discussions in November/December were IMO the most detailed analysis we did.

    Expanding the list of questions is also a job that needs doing.

    That's very cool to know. :D

    Very good thinking!

    I think that's already there - the last question?

    I'm logging out now, back in a few hours...
     
  11. julius

    julius Watchoo lookin' at?

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    question

    1) I heard there's no XMRV in Europe/UK.
     
  12. Impish

    Impish Senior Member

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    I am killer busy with work at the moment but will have time to help out later in the week.

    I think it might be helpful to have a section around the details of what XMRV is as well. We could "borrow" content from wikipedia for virus type, etc.

    As part of this the information needs to be easy to find. The Wiki section is kind of hard to navigate at the moment.
     
  13. Lynn

    Lynn Senior Member

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    Below is my stab at turning Mark's statements into questions. Many of them except the first one are just a simple juxtaposition of the verb to make them into questions. I had trouble with the first one so I reworded it. I even included Julius' additional question because I think it is important.

    • How is it possible for such a new and unknown lab to make a find like XMRV?
    • Did the WPI break scientific protocol by revealing their findings before publication?
    • Has the WPI been irresponsible in the way it has encouraged patients to campaign about XMRV before their findings were confirmed?
    • Has the WPI been irresponsible in the way it has encouraged patients to pay for XMRV tests, even though the relevance of XMRV is, as yet, unknown?
    • Is WPI’s connection to VIPdx labs unusual or shady?
    • Has the WPI undermined their case by linking their findings to the controversial debate about autism?
    • Has the WPI’s poor PR undermined their case?
    • Is the WPI irresponsibly encouraging patients to experiment with dangerous and anti-retroviral medication which is unproven for use by ME/CFS patients?
    • Is it true that several other studies have failed to reproduce the WPI’s finding of an association between XMRV and ME/CFS?
    • Was the cohort used for the Science study well-defined?
    • Are there contradictions between the statements made about where the patients in the study came from?
    • What about the rumours that there was some laboratory contamination in the WPI’s Science study?
    • Lots of studies in the past have found associations between viruses and ME/CFS. Those studies never came to anything, why would this be any different?
    • Is it true that there is no XMRV in Europe/UK?

    Lynn
     
  14. julius

    julius Watchoo lookin' at?

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    for now it might be nice to have the questions/fallacies numbered so we can discuss them more easily.
     
  15. George

    George waitin' fer rabbits

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    Wow, Lynn you really thought about those didn't you!

    I've just about got all the facts on the one that I'm working on and will try to post it later this evening. It will take me that long to pare it down to something readable. (akkk editing! Big grins)
     
  16. George

    George waitin' fer rabbits

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    OK here is my attempt

    The WPI has been irresponsible in the way it has encouraged patients to pay for XMRV tests, even though the relevance of XMRV is, as yet, unknown.

    This statement is a mishmash of misinformation. No member of the WPI has ever made a statement asking, encouraging or soliciting "patients" to "pay" for an XMRV test. Dr. Judy Mikovits the director of research at WPI has repeatedly told members of lecture audiences to wait and to sign up for study's in order to receive free testing in a controlled environment.

    Other members of the WPI staff including Dr. Daniel Peterson, Annette Whittemore and Dr. Vince Lombardi have also encourage members of the patient community to enroll in studies until more information about the virus itself and whiter or not the virus was truly associated with CFS.

    In addition Dr. Coffin and Dr. Peterson (from CFSAC meeting) discouraged individual patient testing at the October 29th, 2009 meeting, as well as Dr. Nancy Klimas in here review of XMRV on November 7th. (read more) Dr. Klimas encouraged patients to participate in studies but discourage patients from testing privately.

    On October 26th a Company by the name of Cooperative Diagnostics put out a press release and began offering an XMRV test kit. (read more ) Many have speculated that the move by Cooperative Diagnostics spured the WPI to license it's research test methodology to Viral Immune Pathology Diagnostics Laboratories so quickly but either way Cooperative Diagnostics was the first horse out of the gate to offer a test to the general public.

    Cort Johnson contacted the WPI in an effort to find out if WPI would offer testing to the public. He received this response. (read more)

    Posted by Cort on October 26th


    Two days later on October 28th VIP Dx made available on their web site two test a PCR as well as a culture test. The testing acceptance was made retroactive to October 23rd which has created some confusion as to who actually made the test available first. (read more ) A statement from the VIP Dx web site indicated that VIP Dx was orientated the test to the physician.

    In January of 2010 a new lab began offering an XMRV test called Clongen Laboratories (read more) to date no one has used this lab that I know off and no results are available on their web site.

    In conclusion the following facts can be laid out, first that no member of the Whittemore - Peterson Institute has ever encourage any patient to pay for testing but has encouraged patients to join studies. Second that testing is going to be offered by some lab regardless of what any group or agency may want. Laboratories offering testing will charge for testing due to overhead expenses. A large portion of the patient community is both ready and willing to pay for testing. Providing reputable testing may help to keep down companies coming to the web and offering testing that they may or may not work.
     
  17. Mark

    Mark Acting CEO

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    Yes the list will need some sorting, but I think it's probably best if we wait until we've gathered all the questions and got a bit further before worrying about that. We'd probably only end up resorting it again. The existing grouping is divided into comments about the WPI themselves, and comments about XMRV. Probably two sections...but more may emerge...

    I like the idea of putting the more reasonable ones towards the top...but I also like grouping related themes together as it aids readability.

    Don't worry, I've got a robust response to make to that one. ;)
     
  18. Mark

    Mark Acting CEO

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    Thanks Julius; I've added that one, with a response.
     
  19. Mark

    Mark Acting CEO

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    No worries on time, this will probably take a week or two; I haven't got a lot of free time coming up myself to be honest...but we'll get there...many hands make light work...

    Agreed we also need an FAQ on XMRV itself, and some work on structuring the wiki pages. Lots and lots of fun work ahead...and anybody who wants can get started on that if they like, but might be best if we stick to one topic for the moment...

    Good point on lifting what we can from wikipedia.
     
  20. Mark

    Mark Acting CEO

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    Lynn thanks for this, I will use it. But we have also had a genius idea from Gracenote: FACT vs MYTH, which works well for some of them. I'll take your question format for some of them though. We'll have to see how it pans out when we've filled in more info.
     

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