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"Patients' power and PACE" (Lancet editorial accompanying PACE Trial correspondence)

Discussion in 'Latest ME/CFS Research' started by Dolphin, May 16, 2011.

  1. Sean

    Sean Senior Member

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    Mark (@ 14) pretty well covers the important points.

    One of the most important distinguishing traits of a good scientist is their capacity to fairly and adequately characterise and account for their opponents' arguments. I do not see that from the PACE authors and their supporters, or that whole school of thought, and never have in the 25 years I have been following this stuff.

    There is a limit to how polite you can or should be under those circumstances.
  2. Mark

    Mark Acting CEO

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    Graham and ukxmrv seem at one point to be suggesting different strategies, but in the end I think both are agreed that different approaches working in parallel are needed. The one thing we mustn't be doing is wasting energy attacking each other over the approach we take. Ranting and raving in a poorly-focused way isn't helpful of course, but I don't see much of that anyway.

    Positive and concrete examples of how we might do things differently are always welcome of course, and I think everyone's open to those - though I can't see much wrong with the response to PACE myself, I'm always open to hearing precisely how it could have been improved.

    One gap that I do see is direct actions - demos, pickets etc - that's of course understandable because, enjoyable and empowering though it is, it's incredibly difficult for us to do that and to plan for it and it takes a enormous amount out of us (as I know only too well). But it still seems a shame that we don't seem to have much of a plan for that; my only thought on that recently was that individual actions in our own cities - as simple as sitting outside doctors' surgeries or wandering around town with a placard or costume, all on the same day - might be easier than all getting down to London, but it's all a tough ask of course. But if they won't listen to words, then actions seem to be the only alternative...

    One point that Cort made when PACE was released seems worth mentioning though. He noted that there were a number of quotes from the study itself that could be used to make the important points about PACE. For example, they were obliged to say that more medical research was now needed (I forget the exact wording), and to admit that CBT/GET did not cure ME/CFS, and they must have said in numerous places that a certain proportion of people did not improve, etc etc...and even where they reported improvements, elsewhere their wording did have to state (but not emphasise) how small those improvements were.

    So Cort's take was that we should pick up the useful quotes from the study itself, the bits that are helpful, and use those quotes to put PACE in proper context - especially while the media was over-egging it and the study authors themselves were doing nothing to contradict that: the authors' own words would have been a powerful brake at that point, and still could be. We're accustomed, perhaps, to picking out the most outrageous comments of the Wessely school, and perhaps we're too much aware that the more reasonable comments aren't really meant sincerely and are generally 'weasel words' that are contradicted elsewhere...perhaps we don't use those quotes as often as we should in campaigning, and end up caricaturing the psychs' position in a detrimental way.

    Anyway, as far as campaigning strategy goes, my philosophy remains that all approaches are necessary, and that academics, activists, demonstrators...all play their part...and once upon a time I might even have gone on at this point to query which factors were most significant in the overthrow of apartheid, but since (on my reading) 2009's Glorification of Terrorism act makes it illegal in the UK to (for example) suggest that the ANC may have played any part in that, I don't want to encourage that discussion...

    So instead I'll end more positively by noting that by a stroke of fortune I happened to be in Germany when the announcement was made that the Berlin Wall was to be dismantled, and since my German was very rough I just assumed I must be misunderstanding the news reports: it took hours for me to believe it because the announcement came so suddenly and unexpectedly...and yet by the time I arrived in Berlin two weeks later, there wasn't much left of the wall but souvenirs...

    So: drip, drip, drip...every little counts...and when the dam bursts and we see our own day of liberation, I expect it to be sudden, rapid, and unexpected...and I just hope it happens in my lifetime...
  3. Dolphin

    Dolphin Senior Member

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    (Not up-to-date on this thread yet) I know about 2 of the 6 others not in the thread: one is from a mild-mannered chap who would tend to make technical comments; another was from Action from M.E., almost certainly Sir Peter Spencer, - and Action for M.E. are generally criticised for not being radical enough. So I doubt either of those letters would be worthy of much comment by themselves/be out of place with the existing submissions on that thread.
  4. alex3619

    alex3619 Senior Member

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    Another type of campaign?

    I have had a thought about anther type of campaign. This might work in conjunction with other approaches (we need to move on every front) but I don't know how applicable it is in the UK, and it is not without risks - too many patients are dis-empowered by the establishment, especially in the UK.

    We should be promoting the view, and enable a website (preferably not in the UK) to publish all failed accounts of CBT/GET, and encourage those posting to lodge a formal complaint through the established medical complaint procedures in the UK. A little research should tell us what they are, but I bet that some professional medical organizations, hospitals and maybe government have their own complaint procedures. Complain on every one.

    We should be especially encouraging complaints about CBT/GET in which patients are made worse. I know such complaints are whitewashed, but volume counts. Sophia Mirza was one person, what if thousands of such cases, although perhaps less severe in outcome, were made public?

    All of this should be public. This has three outcomes. The first is that it publically embarrasses the government and any doctor or hospital involved. The second is it is a public record of failure. The third is that the complaint procedures will be snowed under. They will probably do pro forma rejections, if not at first then after a while, but then we have opened up a separate human rights issue which we can complain about. If they are not willing to pay small amounts per patient for medical research and good medical care, make em pay large amounts on complaints and PR. I am not talking about legal action, there are separate risks in court actions.

    The downside is that individuals that do this risk being labelled as troublemakers, and treated even more badly. My counter to this is make all such treatment public, every time, including all documentation. Make everyone know they are being watched, and will be publically named.

    I only write about this because I have been thinking of doing something like this in Australia since our main political parties keep muttering about how well disability is handled in the UK, in a cost containment sense.

    Bye
    Alex
  5. Valentijn

    Valentijn Activity Level: 3

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    I think it is very important to consider how we appear to "outsiders" when we respond to articles, especially studies conducted by people with a lot of letters after their names. To a large extent we're used to talking with each other and we take a lot of things for granted - such as how some doctors view the disease as not really existing. More specifically, a lot of us are well-acquainted with the prior work of those who conducted the PACE study. We know how those people are thinking, and that they made up their minds decades ago - but the general public has no idea of that. Some things we should try to keep in mind:

    1) Don't attack the people conducting the study. Making any sort of derogatory comment, no matter how true or justified, is going to put people off. This includes even saying that they went into the study biased, etc. When commenting about a study in public, try to pretend those people don't even exist. Why? Because they are (or pretend to be) doctors, and the public perception is that doctors are good and should be trusted unless proven otherwise. Usually it's a reasonable presumption, and attacking it immediately doesn't look very sane.

    2) Don't fixate. The positive XMRV study and other developments have been hopeful in providing further understanding of the disease. And while we really really want something to come of them, we have to accept that nothing is proven with certainty. Again, fixating on one key to the puzzle doesn't look very well-balanced. Show an open mind.

    3) Don't focus on other studies. While it's pretty obvious that this study contradicts many others, that does not prove that this study is the faulty one. It may help to mention other studies, but to an outsider it's just as plausible that the PACE study has disproven the other studies.

    4) Don't talk about yourself. Although our personal experiences probably all contradict the results of the study, personal experience has less significance in a scientific setting than actual studies. Even though our contradictory experience is highly relevant, especially given how many of us have had that experience, it might look like you value anecdotal evidence more than "objective" scientific evidence, and anything else you say might be dismissed as a result.

    5) Don't sound emotional. The people conducting the study and the staff of the Lancet have made several attempts to make us sound like raving lunatics. Fortunately all the letters they chose to post give the opposite impression, so they've shot themselves in the foot with that one.

    The best way to attack a study is to attack it directly, as many people have done, by solely focusing on critiquing the methodology and analysis of the data.

    Making comments on regular news articles is a somewhat different proposition. There is a different audience, and usually no standards required in making comments. While it's best to still avoid the mistakes listed above, a detailed statistical analysis of the study is not likely to have any impact, since the average reader has 0 familiarity with the actual study and is only reading what's in the article.

    There will probably be comments about laziness, fakers, and/or head cases. Responding to one (and only one) is a good approach. But keep the above points in mind. If the article doesn't describe symptoms well, include a brief list that doesn't use the "F" word. Mention that there are numerous studies showing physical signs that can be objectively and quantitatively observed by doctors. Suggest, politely, that the disbeliever take half an hour to research the disease before dismissing the suffering of those that have it, such as with Google Scholar. Keep it brief.

    I tried this approach recently with good results (I really didn't expect the guy to ever look at the article again, much less apologize): http://www.guardian-series.co.uk/news/9024189.CHIGWELL__Family_s_anger_as_ME_unit_is_closed/

    Valentijn, Amersfoort says...
    6:03pm Thu 12 May 11
    "@Joe: Numerous recent studies have shown a variety of objective signs of CFS/ME that can be observed by doctors. These include the presence of very high levels nitric oxide and its products around the muscles being used, as well as brain lesions for the more seriously affected, and nerve infections in deceased patients. This is not "fatigue". It is a debilitating muscle weakness that results in muscle pain, muscle twitching, and even cramps after even minimal activity. Please do half an hour of research, such as on scholar.google.com before dismissing the suffering of millions of people as laziness."
  6. Hope123

    Hope123 Senior Member

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    Valentijn, your points are reasonable except for #3. It is common practice to bring up opposing studies in academia when discussing papers. Discrepancies are interesting. It doesn't mean for sure the study in question is faulty but when there are studies with differing results (look up Nunez GET/CBT trial for CFS 2011), it does make researchers rightfully question the validity or applicability of said study.

    Also, don't let initials after names affect you too much. A person with a good sense of logic and familiarity of an area can make a good argument; OTOH, I've encountered the reverse -- lots of initials after name but not particularly bright.
    One of the smartest scientists I knew had a philosophy background; his logic and ability to dissect arguments was top-notch and he attributed it to his non-science background.
  7. Valentijn

    Valentijn Activity Level: 3

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    I agree completely. Unfortunately discrepancies are often used to try to dismiss the results one study or the other, which is problematic. I think that when mentioning other studies it's important to keep it in the context of "these results seem anomalous compared to these other studies" versus "this study is WRONG because this other study reached the opposite conclusion."

    I ignore the initials ... but a lot of people don't. When making public comments it's good to keep in mind the first impression the researchers are making with those initials. Logically speaking, their arguments should not be given anymore weight than anyone else's, but rather be judged upon the strength of the arguments themselves. However, a lot of people are susceptible to being biased in favor of people with expert (seeming) credentials.
  8. Angela Kennedy

    Angela Kennedy *****

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    Thank you Mark, from someone who has made a formal, and reasonable, if robust, complaint to the Lancet, and has yet received no response, but instead further public insinuation of unreasonableness (I may be one of those 'submissions' Horton attacks). I will be forced to take the matter further, it appears. That is not my fault.

    Hooper's complaint was also substantive.

    Calls for impossible bending over backwards to get the right 'tone' of 'respect' for parties who have never, up to now, shown the good faith needed for rational dialogue, and continue to exhibit an apparent bad faith, are unrealistic. Supplication has never been the answer in adversarial situations (which this has developed even more into due to Horton's behaviour, certainly).
  9. Bob

    Bob

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    I think that it would be very useful to have a website where people could relate their negative experiences of CBT and GET.

    And I think it would also be useful to collate a list of any research studies that show CBT and GET to be ineffective for ME. I'm not aware of any such research existing - is anyone aware of any?

    I think it would be helpful to collate a list of research that would help us argue the case against using CBT and GET as a primary treatment for ME.
  10. Angela Kennedy

    Angela Kennedy *****

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    I also think some people need to understand that adversarial positions are different to 'confrontation' - and the two are frequently confused. It seems this community is never allowed to take adversarial positions even though its interests are under attack so much it really should. In all other areas of public discourse, adversarial positions are taken. But when the ME/CFS community and its supporters do so - good god, they're 'extremist'! For expressing disagreement or concern, or complaint!

    This community is at the mercy of those who construct them as confrontational, extremist, unreasonable people, in order to win points against them. In this day and age this community should have gotten wiser to that than they have. Many have of course, but we still find ourselves constructed like this, and too many people fail to learn the lessons of the past (not just the history of ME/CFS, but history in general). People's fear of their own and each other's justifiable objections and positions as adversaries against powerful others, and the ability of others to exploit that irrational fear, is one of the biggest problems this community faces.
  11. Esther12

    Esther12 Senior Member

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    We are in a difficult position.

    I think that we're being badly treated, that the evidence shows so, and that the arguments of those responsible can be picked apart.

    But I also recognise that we are starting from a position of weakness that will lead many to dismiss our concerns out of hand, so being right often isn't good enough.

    I honestly don't know how it's best to proceed. It would be great if there was some truly independent and extensive investigation into the patient concerns that surround CFS, with a prolonged exchange of ideas between all parties involved, with the claims of all being held to the same evidential standards, rather than a constant deference to those in positions of authority. Honestly though, I don't think that will happen.

    Generally, I think it's best for us all to try to hone our own arguments, learn about where we may be mistaken, ensure that what we say is well supported by the evidence, and criticise others when we their claims are not... Just by doing that on a forum like this, I think that we can help become a better informed and harder to dismiss group. Maybe.
  12. Dolphin

    Dolphin Senior Member

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    The interventions themselves should be criticised. They are based on a flawed model of the illness.
  13. Dolphin

    Dolphin Senior Member

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    It is unclear from your message what you are specifically blaming for the Lancet editorial but presumably it's the letters. However, it is far from definite that they were necessarily the cause of the response; it could have been more things like calls for the paper to be retracted, for him to resign, etc.

    This was supposed to be a definitive study; it is a normal part of academic discourse that people challenge it if they think there are flaws with it. It would be good if more academics would do this but the record shows that only a small number of letters have gone in to medical journals in the last 15-odd years that weren't written by patients/those associated with patient organisations - if we don't do it, things go unchallenged. In the environment where claims in CFS were often going unchallenged, grander and grander claims have sprung up e.g. that CBT and GET were leading to recovery/full recovery.
  14. Bob

    Bob

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    I agree Angela. If we look back at history, nothing got achieved by accepting the status quo, quietly and meekly.
    Even those who are considered peaceful agents of change, such as Gandhi, were extremely adversarial and confrontational. They just didn't advocate violence, but took the position of peaceful, but very vocal, resistance.
    Being meek and respecting authority rarely brings change.

    I think we should all ignore the comments from Horton.
    He, himself, has attacked the entire ME patient community, with one sweep of the brush (on the ABC radio broadcast), in a very unscientific, unobjective, and judgemental way.
    He has lowered himself to the tactics of what he is accusing others of doing, and yet he is the one in a professional position of responsibility.
    We have evidence that he has behaved this way, but there is not such explicit evidence that the ME community has behaved in the way he is suggesting.
    Although, it is quite possible that he has received correspondence that we are not aware of.

    I think the most important thing, for us to focus on, is that whatever our community is doing, right now, it is working. Our community has brought a lot of attention and scrutiny to the PACE Trial, and in doing so, we are making the establishment squirm and hit out at the patient community in a very unpleasant way. It means that they are under pressure. I think this is good news for us. And I think that we have not stopped applying the pressure yet... There is a long way for us to go with this study yet... We don't even have access to the raw data yet... And we haven't taken much political action yet... We've almost purely done the analysing and the scientific rebuttals so far.

    Let's keep on applying the pressure! And let's ignore all of these improper personal accusations and attacks.

    The scientific establishment attacking a whole patient community does not make them look good.
    Maybe they should try listening to us all instead of attacking us! After all, we are the ones who understand the disease the most... We live with it... Maybe there is good reason why we are all so offended by every aspect of this PACE Trial!
  15. Angela Kennedy

    Angela Kennedy *****

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    Nicely put Bob.
  16. Bob

    Bob

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    Thanks :D
  17. oceanblue

    oceanblue Senior Member

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    I'm feeling quite despondent about all this.

    The letters were great. 8 published is a fine result (even if the bastards didn't publish mine...) and good criticisms of the trial were made in a fair and reasonable way. And I agree with Dolphin that while it would be better if academics made these points, since this isn't happening patients have had to step in.

    However, the way we were portrayed as the angry and the unreasonable is a bad thing in my book, and harms our cause. Richard Horton seems to be an emotional guy and I don't think many journal editors would have written such an intemperate piece but we have to live with it. I don't share Bob's optimism that this kind of reaction is good for us. If this were a political campaign and these were politicians responding such a reaction might be a good thing - but I don't think it helps us influence the research community (the ones doing currently CFS research now and the ones that might be tempted in to do good biomedical stuff). I definitely don't think we should set out to provoke more reaction like this (however unreasonable such a reaction might be).

    Like Esther12, I'm not sure what the best way forward is. Several different approaches have been advocated on this thread and each advocate clearly believes their approach is the right way to get result, and we all want results - but the moment I don't think we are getting them.
  18. Esther12

    Esther12 Senior Member

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    I was feeling despondent about it all after hearing Horton on ABC. I thought he was going to publish the worst letters as an example of how nuts CFS patients are, and then let White kick them about. As it is, I think his editorial show how his mind works, and it's good to get that out in the open. Thankfully, they didn't publish your letter either.

    It's turned out better than I feared.

    Anyone mates with David Cameron? I feel in a much better position to win the intellectual argument now, but less hopeful that this matters. Has the CFS parliamentary committee started up again? Anyone know which constituencies the MPs are from? Details: http://www.investinme.org/IIME Campaigning-meandmymp APPG May 2011.htm

    The advantage of Pace is that now it's widely thought that only crazy patients could think anyone would claim that CBT and GET are curative, and being offered the false promise of full recovery if I was only to follow their advice was something I found really difficult when I got ill. It's sounds like not many will have to go through that any more. (Surely CBT and GET can be curative for some though!? Or all the people dumped in the CFS wastebasket diagnosis, surely some will actually be ill because of deconditioning and false illness beliefs?). It's possible that we're going to see people realise that it's not worth funding the sorts of quacky CFS centres we've had to endure... it's rather doubtful that the money saved there will be invested in research to work on the causal mechanisms for CFS though.

    For all the problems with Pace, and the way the benefits of CBT/GET were exaggerated... the raw data did undermine many of the claims of those promoting CBT/GET for CFS. This is a good thing. I don't think anyone could look at Pace, and decide that CBT/GET are the answer, and we should devote ourselves to finessing these highly effective treatments.

    edit: Also... the GET promoted in Pace seemed to be less bad than the version of GET we've seen promoted by Chalder etc elsewhere. Maybe they're gradually realising that they were wrong? To me, the version of GET promoted in Pace looked pretty close to what I would consider Pacing (although I've not read the guidelines thoroughly enough to say so with any confidence), while the Pacing component looked crazy.
  19. OverTheHills

    OverTheHills

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    Where next with PACE

    I'm sorry to hear that you are despondent about the outcome here Oceanblue. I think its a job well done by all of you. And I think I can feel a long post coming on to explain why I feel its a good start - which we as a community need to follow up, and
    to put forward an idea.

    No fact (such as 5000 biomedical findings) or action by us is going to change the minds of 'true believers' such as White or Horton. They are a lost cause for any sort of argument whether based on reasoning or emotion.

    Academics of a more open mind may well be influenced by these Lancet letters and also through their references be reminded that GET/CBT are useless and dangerous. so I also think these letters are a good, defensive acheivement. As Dolphin says, if we allow this sloppy ideological drivel (to paraphrase) to go unchallenged it will grow unchecked and sadly it is we patients who seem to have the burden of challenging it.

    Most Doctors and policymakers I'm sure will just skim the Lancet read the conclusions of studies, editorials and press releases - and this is how White, Wessley and co manage to keep them captured. This is the constituency we have to influence.

    To change the minds of doctors and gain public/political awareness of the iniquity of the current situation we need to go further than letters in the Lancet.

    Is it too fanciful to write our own paper for publication, using the raw PACE data (which I sincerely hope will be made available from that FOI request) drawing a real and very different set of conclusions? I know nothing about statistics but it seems several of you on this board do. I would happily pay a bit towards costs for this, and some of the ME charities might put in some . It seems to me that Lenny Jason might know someone who can help us with this (a 'name' on the paper to make publication easier, friendly journals who might wlecome controversy) . A press release to accompany such a publication could be just as confrontational and clever as those from the other side (to help maximise press coverage).

    Possibly I'm being too optimistic, but I think continuing to challenge PACE makes pwME everywhere safer - UK policy is influential in NZ and Australia, and we know Wessleyites have had influence in the US too.




    OTH
  20. Bob

    Bob

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    I'm sorry to hear that you're feeling despondent ocean. I get like that occasionally, especially when things appear to be going backwards for us.

    ocean, I think things are getting better for our community overall. We have to look at the bigger picture, and I think that things are changing for us slowly. I believe that when we look back, the PACE trial will prove to be a step in the right direction for us, although it is hard to see how that could be so right now.

    Our community has always been portrayed as hysterical malingerers with personality disorders. This is nothing new.

    I agree that this is nothing to feel particularly optimistic about, but I do think that we have put an immense amount of pressure on the Lancet, and the editor is just lashing out because he feels cornered. He can't back down because that would be an admission of failure on his part. Remember that he will view all of our objections as personal attacks on his own credibility and professionalism, because we are actually questioning his competence and ability. Unfortunately Horton has no way of defending the indefensible so he has attacked and denigrated an entire patient community, instead of engaging with the issues. It's very unprofessional.

    I always thought that the rebuttal of the PACE Trial would build up steam over the period of a couple of years, as we learn to use the information against the establishment, and in our favour, over time.

    It's very early days yet, in terms of being able to explain to people why the PACE Trial was such a massive failure.
    I think we will do that over the next year or two, as we start to use the information in the political arena.

    We've done the first two steps... The first was analysis, and the second was the letters to the Lancet. And now we have to carry on with the next steps, and take the argument to a wider audience (i.e. the politicians, NICE, the MRC, journalists etc.)

    I've probably said nothing to help how you're feeling ocean.
    I know that you've done a lot of hard work with this project, and you probably feel it's come to nothing.
    But that isn't the case. Our community has come together in such a united way over objecting to this PACE Trial that we can only get stronger if we continue to work together with such a strong united voice.

    I didn't believe that the scientific community would ever retract this paper, but I do believe that we can use the PACE Trial results against them, and in our favour, especially in the political arena over the next couple of years. The Trial was a disaster, and it proves that ME is an organic disease, and that CBT and GET are useless. When we get the raw data, we might even discover that CBT and GET were actually harmful. We just have to make sure that the establishment are always made aware of the facts, and are forced to use the data to enhance our lives by accepting that ME is an organic disease, and needs biomedical treatments. At the very minimum, we won't be having any more of these stupid psychological studies into ME, but at best, the Trial was the door to a better research future for our disease, and the point where the focus was taken off the insulting and disrespectful psychological therapies, and even possibly the starting point of where we start getting treated with respect.

    I know, I'm being optimistic again, but the Trial was such a powerful failure, that I can't help feeling that it is a mark in the sand. The point where our community starts to be treated seriously. But I think it's going to take a couple of years before we see any tangible changes.

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