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Summary:

On this episode of Rheumer Has It, Cheryl Crow and Eileen Davidson tackle the pervasive issue of misinformation in the rheumatic disease community. Drawing on their personal experiences as patients and advocates, they discuss why false claims, especially about “natural cures,” supplements, and anti-medication rhetoric, are so emotionally compelling yet potentially dangerous. 

They share examples of how misinformation can lead to physical harm, wasted money, and delayed treatment, and emphasize the importance of critical thinking and media literacy. The hosts introduce practical tools such as the “CRAAP test” for evaluating sources and encourage listeners to seek balanced, evidence-based hope rather than false promises of cures.

Episode at a Glance — Main Themes

  • 🌐 Why misinformation spreads: Emotional vulnerability after diagnosis, grief, and the appeal of “quick fixes.”
  • ⚠️ Common myths: “Natural is better,” “medications are worse than the disease,” “vaccines cause autoimmune issues,” and “dietary cures can reverse disease.”
  • 💊 Real risks: Financial loss, physical harm (e.g., liver damage from supplements), and worsening disease due to delayed or stopped treatment.
  • 🧠 Critical thinking tools: Using the CRAAP test, recognizing cherry-picking and predatory journals, and assessing conflicts of interest.
  • 💬 Empowered decision-making: Encouragement to “go to the source,” value science-based hope, and stay informed through credible experts and patient advocates.

Medical disclaimer: 

All content found on Arthritis Life public channels (including Rheumer Has It) was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Eileen Davidson Bio

Eileen Davidson, also known as Chronic Eileen, is a disability and chronic illness advocate from Vancouver BC Canada. Living with a diagnosis of rheumatoid arthritis, she spends a large focus on volunteering and creating awareness around arthritis. With The International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis) Eileen is the Educational Media Assistant. Along with AiArthritis, Eileen is a member of the Arthritis Research Canada patient advisory board, and author with over 100 published articles.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Full Episode Transcript:

[00:00:05] Eileen Davidson: Welcome to Rumor Has It, the podcast that busts myths, highlights evidence, and inspires hope for living better with rheumatic disease 

[00:00:13] Cheryl Crow: Through plain language, interviews with experts, we offer actual knowledge so you can thrive today. 

[00:00:18] Eileen Davidson: My name is Eileen

[00:00:20] Cheryl Crow: and my name is Cheryl.

[00:00:22] Eileen Davidson: Join us as we bust myths and spotlight evidence.

[00:00:26] Cheryl Crow: Yay. So today’s topic is really near and dear to both of our hearts ’cause we are both patients with rheumatoid arthritis and we are both really patient educators through all of our advocacy work. And our topic is how to spot misinformation, red flags, and similar like myths and just incorrect information online.

This is really important to me because I do believe everyone should have the freedom and the power to make their own choices in their healthcare, but they should be able to do so from a valid set of data and information. And I see a lot of people being led astray by misinformation online that leads them to making choices that are not in their best interest for their health.

And we’ve both been contacted by people who say, wow, later on down the line, I really wish I had made a different choice. I just didn’t know better. What, what about you? Why is this important to you? 

[00:01:24] Eileen Davidson: Well, very similar, everything that you have just said, obviously. But it’s also important to me because when I was first diagnosed, I felt really lost on where to start and who to believe.

I had never been sick before. So I. I didn’t have any experience having to take medication for the rest of my life or having disease or having to go to the doctor basically every week. I went maybe once a year before, you know, that kind of thing. So I was really lost at first, especially when I was kind of vocal and on the internet about talking about what I was going through.

There was so much advice thrown at me from people from, you know, just wacky cures. Expensive natural supplements and things that they were trying to sell in an MLM scam. It was a bunch of false hope people telling me, you know, you shouldn’t believe doctors medications are gonna make you sicker.

And when you’re newly diagnosed, especially going through like the grief process, it’s really hard to tell. You know, what is right and what is misinformation. Mm-hmm. 

[00:02:41] Cheryl Crow: Yeah. I, I a hundred percent agree. And thank you for sharing your, your personal reflections on that. We know that, that, that critical period right after you’re diagnosed is, is so emotional, and it’s a time that a lot of people do get swept away in these false claims or this claims based on, based on incomplete scientific evidence.

And I thought this was a great question that you, you and I discussed before recording: why? Why is misinformation so tempting and what is the emotional implication if we never correct that misinformation

[00:03:16] Eileen Davidson: well, if we continue to believe in something, because it sounds too good to be true, we risk damaging our bodies. 

[00:03:29] Cheryl Crow: Mm-hmm. 

[00:03:29] Eileen Davidson: Or spending thousands of dollars on something that doesn’t work. And like I said, when we are in that grief process, we’re going through a stage called bargaining. And for me. I remember going to the Vancouver Wellness Show. I pulled a whole bunch of money outta my bank account and I went and I tried anything.

I bought anything that would say that would help me reduce inflammation and boost my immune system. Little did I know that I didn’t want to boost my immune system. I was living with an autoimmune disease, boosting my immune system with echinacea and ginseng and all those would actually worsen my disease because I have an overactive immune system.

I have an autoimmune disease, so it can actually, if we do listen to that misinformation and we don’t find out if it’s bad for us, it can be quite damaging. For some people, it’s cost them their lives. 

[00:04:25] Cheryl Crow: Yeah, and I have, a great anecdote to share. It’s not my own, but Dr. Kara who’s the allergist, immunologist and lifestyle medicine board certified doctor, she also has Sjogren’s disease, and she shared, I think it takes a lot of humility as a doctor to be able to share her own personal experience where she got led astray by an unregulated supplement that she found online. She thought it was gonna help her. It ends up landing her in the hospital with liver damage, and that has happened to a lot of patients. That their supplements, the supplement industry is unregulated in, and unlike the pharmaceutical industry, meaning what, what they say is in those tablets is not always what’s actually in those tablets.

And furthermore, like things like turmeric, if you overdose on that, that’s very, very bad for your liver as well. So what I think is a great irony here is that the natural stuff is marketed and claimed as so much safer, only because it’s natural when really there are many things in the natural world that are poisonous or detrimental to the human body.

So that’s number one. And number two is, I would just also say my own experience with this has been more like, it’s emotionally hard for me to address this topic of misinformation. Sounds weird ’cause you’re like, it’s just information, it’s either right or wrong, right?

Well, my goal and like creating Arthritis Life and the podcast and Rheum to THRIVE is helping people feel that they can feel empowered and feel hope that they can live a good life with their condition. But the kind of hope a lot of people want is this kind of hope that these misinformation people utilize, which is: if you just take my supplement, if you just take my program, you’re gonna never have pain again and never have fatigue again.

And I’m not, I won’t say those things ever. I’m very, very picky and particular about my language ’cause I never wanna provide false hope to people. I also want to provide the kind of hope that is the realistic hope, but that’s really very real, which is you can live a good life with the ups and downs, with the things that are out of your control versus saying your only hope for living a great life is a, a life where you control all your symptoms and you heal your gut and your illness goes away.

That’s not the only kind of hope I’m interested in. You know what I mean? I just think that that it gets really tricky because I feel like when I’m correcting misinformation, I feel like I’m taking away their hope ’cause they’re hopeful about this supplement, they’re hopeful about this diet sometimes, and I, I feel horrible being like, well you’re probably not gonna be able to go off your meds. Like if that’s your goal is to go off your meds, that’s probably not realistic for you.

It’s like knowledge is power of ignorance is bliss. So I don’t know, I don’t know if you’d be able to feel the same way, but I just want everyone to be happy and I know. I can’t make that true.

[00:07:18] Eileen Davidson: Yeah, i, I agree. Like it is really difficult as a patient who has been diagnosed for over a decade, when I meet somebody new, it’s really hard to tell ’em you’re gonna have a level of pain forever. You’re gonna feel that fatigue forever. You’re gonna need that medication forever.

You’re gonna have to try many different medications until you find one that works for you. These are all very difficult things that it is to come to acceptance to, and then also to tell other people. Well, I wish I could tell ’em, you know, there’s this one thing, one thing that helped me, but it’s been more a combination of a bunch of different things, and most of them have all been backed by science in some way, so, yeah.

And, and I think it’s really important, you, you brought this up with your program. Your program is very realistic. You come from a medical background, but there is a lot of people out there who are selling false hope in coaching programs saying, I eliminate all my autoimmunity with x, Y, Z, and I’m selling the program, I can help you thrive. Mm-hmm. But like thrive without autoimmune disease, not thrive with autoimmune disease. 

[00:08:31] Cheryl Crow: Yeah. Yeah. I, I appreciate that distinction a lot. And a lot of people don’t, don’t make that distinction. Yeah. So, the next thing we’re gonna do is dig into what we’ve seen as patients and advocates in on chronically online people for over a decade.

In my case, the common misinformation we see about rheumatic diseases in general and why it’s harmful. So, I’ll let you go first. 

[00:08:57] Eileen Davidson: Well, I think anybody listening to this probably knows we’re gonna start with natural is better myth. Well, natural is absolutely fantastic and it has its place in many different parts of our life, including our rheumatoid arthritis or rheumatic disease care.

It is not always better. For example, I remember when my aunt was being treated with gold, gold is a natural substance. It didn’t stop her disease from progressing in her needle in a wheelchair. And like you have said, you, you quoted Dr. Wada’s experience as well, even as a healthcare professional, that that was really surprising.

[00:09:32] Cheryl Crow: It was before she, yeah, it was in medical school. Yeah.

[00:09:35] Eileen Davidson: Okay, cool. That, that’s, that’s very good to know. 

[00:09:38] Cheryl Crow: Yeah. 

[00:09:39] Eileen Davidson: But yeah, like it is easy to want, to hope something natural is going to help us. It’s also marketed that way. Want you to feel that you’ve got this influencer vibe of natural is better.

Everything’s green and organic. It’s greenwashing half the time. Mm-hmm. 

[00:10:04] Cheryl Crow: It’s, it’s, yeah, a hundred percent. And I think alongside that, the next common misinformation we see is the fear mongering about, specifically about medications. And the, I just saw it like in two different discussion threads on Facebook this weekend, which is the medicines are worse than the disease, which now I think this is where it gets complicated.

Each individual person’s experience is valid. If you yourself, you may have mild rheumatoid arthritis and you had a genuinely horrific, like a allergic response to the medication. Of course, in that case, like, you’d rather have the disease than take this medication. It’s directly harming you ’cause you’re allergic to it.

There are cases where the meds worse than the disease, but if you, the good science is BA based on high quality, a series of high quality research articles and studies that look at ideally a large amount of people and say, what is the overall trend?

And it’s clearly ’cause now we have a pre and post group of people. We have the people before the current era of medications, and we have the people in the current era of, of rheumatoid arthritis and rheumatic disease targeted therapies, those people are suing substantially better. Yeah.

That population of people is living longer. They’re doing, they’re having the highest rates of remission than we’ve ever seen in rheumatoid arthritis and related conditions because of the medications. So you really can’t say that the medications are worse than the disease, especially when the disease, when uncontrolled takes an average seven years off the lifespan of someone with RA.

[00:11:44] Eileen Davidson: I’m gonna back that up a little bit more. It’s not just helping the US feel better, but it’s actually reducing the amount of people that need wheelchairs. The reducing joint replacements. Yeah. Joint replacement surgeries. It’s even actually helping reduce serious comorbidities that come with rheumatic disease, like cardiovascular disease. It’s helping reduce people reaching di diabetes or even osteoporosis.

There’s many different things that our medications have helped. Reduce, not completely eliminate, unfortunately, but it has reduced this, and that’s really important to think about because when we don’t take our medications, even if we’re not really in a flare, we could still have disease activity if we don’t feel it.

[00:12:34] Cheryl Crow: Really, really good point of systemic nature of the condition is often forgotten. Most people, just focus on the joints.

I know the next one for you is vaccines. That’s hot button topic at this particular time. Yeah, yeah, yeah. What’s the common stuff you see on that? 

[00:12:51] Eileen Davidson: Well, this is really recently, obviously the pandemic brought out a bunch of misinformation about vaccines really brought it out. And it’s been a hot topic since 2020. Really? Mm-hmm.

But what I have been seeing lately in a lot of the Facebook groups for rheumatoid arthritis, and it could be happening in other autoimmune diseases too, but it’s propaganda bots is what I called them.

And there has been a number of posts of people saying that the vaccine is what caused their rheumatoid arthritis or their autoimmune diseases, or it’s made their disease worse. Or there’s other misinformation out there like the COVID vaccine particular causes myocarditis when it’s actually COVID that does.

And so it’s very, very touchy subject. I know that when I have spoken about being immunocompromised and why I believe in vaccines from, you know, listening to the researchers, listening to my doctors versus somebody who has a YouTube channel, even though we are on YouTube right now. Yeah. It’s just.

Gathering that information and knowing who to listen to, and then also knowing the risks of what can happen when you have an infection and you are on our medications and knowing that it can actually do things like make our medications stop working for us. We can land us in the hospital. It can make our disease worse ’cause we have to pause medication.

So there’s so many different reasons why me, as somebody who lives with rheumatoid arthritis is passionate about busting those vaccine myths because it is so important for me to be protected from those infections and many other people with immuno who are immunocompromised. And it to me, what I see these posts by obvious bots in these Facebook groups, and I’m really curious is what they’re trying to do, what their agenda is.

How damaging can that be for our community? 

[00:15:06] Cheryl Crow: Yeah, a hundred, a hundred percent. It’s really, a lot of people are saying in the field now that vaccines are a victim of their own success, meaning that because we don’t see people walking around with the conditions as often that vaccines have prevented people forget how how, how important vaccination is and, and such.

So we’re gonna talk about that in a different episode coming up by the way.

[00:15:28] Eileen Davidson: Yeah, that’s a privilege for us to experience because there’s other countries that don’t have the vaccines that we have, and they have, you can easily see what it’s not like to have the proper vaccines.

[00:15:40] Cheryl Crow: Yeah, absolutely. And by the way, we’re not the only ones that are out here trying to counteract a lot of misinformation online. I’ve been really heartened to see in the last few years, just as the rise of me medical misinformation online has correlated with COVID and more people being online and stuff like that.

There’s also been a rise of, of medical professionals and patient advocates coming together to try to correct misinformation. So it’s not just Eileen and I. I’m gonna put some great links in the chat, like Dr. Adrian Chavez who has a PhD in nutrition and some others.

And, you know, the next one that I was gonna talk about is very quick because we’ve already covered it a little bit in another episode, but it’s misinformation about dietary cures and supplements.

And I’ll simply say for that in no other area do I see the claims of the effectiveness of an intervention being so wildly outsized compared to the actual effects of the intervention. Meaning people say that all you have to do is do the autoimmune protocol and all your symptoms are gonna go away.

Now, that doesn’t mean that and any one individual, it might be a really helpful tool in or toolbox, or it might be really, really foundational for your treatment plan. But there is no high quality evidence at the moment that any specific diet dietary intervention for rheumatoid arthritis and rheumatic disease specifically is going to do what some of these people claim they’ll do- for example, put your disease into remission. Guaranteed get reverse your autoimmunity.

Those claims are really, really hugely outsized for the actual effect, I should say. Something like May help you manage, may help you reduce fatigue, reduce pain, that’s totally fine to say. But watch out for words, and we’re gonna talk more about specific tips, but one I would say is really watch out for black or white claims, like a hundred percent pain-free.

That is not realistic. And no high quality evidence would ever say guaranteed pain-free. You can’t guarantee pain free if you’re a medical professional or if, and you and, and you won’t guarantee pain free if you’re an ethical person, in my opinion.

Anyway, that’s mine. What, what about your, the next one for you? 

[00:17:48] Eileen Davidson: No, I think that was absolutely beautifully said. Thank you for saying that. And you know, completely kind of tying into that is, do they have an undisclosed conflict of interest? Like are they gaining money from what they might be selling you?

Are they selling supplements? Are, is it a multi-level marketing agency kind of thing or are they coaching a, a, are they offering you a coaching program without the appropriate background or education or like just gone over wild claims? PainFREE, reverse autoimmunity? I’ve very rarely heard any of them actually say remission, because they don’t know what remission is.

They wanna say cure, right? Yeah, yeah. So yeah, you’ve gotta make sure, like ask yourself, why is this person recommending me this program? How much is this program? 

You gotta ask yourself like, are they getting something out of this? Mm-hmm. 

[00:18:43] Cheryl Crow: Mm-hmm.

[00:18:44] Eileen Davidson: First of all, are they listening to you? And then do they have a suggestion or are they just saying, oh, you have an illness here, I have something that will help you? 

[00:18:55] Cheryl Crow: Exactly. And I really do think we can separate the people who are spouting misinformation, I think of them as two Venn diagrams that don’t really overlap.

One of them is people who know that what they’re saying is wrong and they’re simply in it to make money, make a quick buck, sell, sell snake oil. They know that it doesn’t work and I actually think that’s a smaller fraction. Maybe that’s ’cause I’m an eternal optimist. I think the bigger Venn diagram that doesn’t overlap, but it’s right next to it, is people who lack, I’m trying to say this without being like sound like a huge, academic snob or something like that, but it’s people who genuinely believe the things that they’re selling and they don’t have the, the requisite medical literacy to understand what they’re selling.

And they truly, I do think there’s a population of people who have their heart in the absolute right place. And I think that’s most commonly somebody who, they have tried intervention that worked really well in their individual body and they decide. That that one anecdotal experience is sufficient to say that this worked for me.

Therefore, if you just do my program, it’s gonna work for you. Which that is not good science, right? Supplementing evidence with personal anecdotes because the human brain likes personal stories and personal storytelling, that is fine, but you have to be able to back it up. But that’s when you’ll never hear me say.

You know, do like it worked for me, therefore, for it will work for you.

[00:20:27] Eileen Davidson: I think, I think it’s important that we talk about it and, and it is gonna be a passionate discussion because as patient advocates and people on the internet meeting so many people with different conditions and rheumatic diseases, we have seen what misinformation can do.

We have seen and been people who have tried to target us with misinformation. 

[00:20:54] Cheryl Crow: Yeah. I will also say that some of those people who I said have their heart in the right place and they end up making claims that are outsized for the effect of their programs. I think many of them do make a good faith effort to find research to support their claims. What they end up doing is cherry picking data, which is not best practice.

So evidence-based practice does not mean you, you have a bias towards a program ’cause it worked for you and then you just go out and find a research study that has one little paragraph in it that supports what you want, that you have to look at the wealth evidence, and that’ll be part of what we talk about next.

Mm-hmm. So what are some of your tips for spotting misinformation and red flags online? 

[00:21:35] Eileen Davidson: Well, to break it down, the CRAAP test is a really great one, and we will provide more information about the CRAAP test in our resources that we recommend with this podcast episode. But what does CRAAP start for and why do I keep wanting to say CRAAP?

Well, because it means currency. What does the timeliness of the information, relevance, the reason the information exists? Authority, the source of the information, the accuracy, the reliability, truthfulness and correctness of the content, and what is the purpose, the reason the information exists. And in these resources, you can look into more of applying the CRAAP test to evaluate your sources, I highly recommend it if you’re just starting out.

It’s a great, great way to not feel so lost in how to spot misinformation online. How about you, Cheryl? What would you recommend? 

[00:22:30] Cheryl Crow: No, I, I, I wanna give credit there, there CRAAP test was actually developed by a librarian at the Miriam Library, California State University, Chico.

We’ll put a link in there. ’cause I think that that’s brilliant. And the other thing I would say, and this is we’re gonna do a separate episode with a researcher where we really break down like what to look for in terms of evaluating evidence for claims.

Because it is the whole, you would think science is black or white, but it actually is. Varying degrees of evidence. Autoimmune disease is very complicated. What actually causes it? What actually is gonna help treat them, but point the first thing, like you already mentioned, look at the source of the claim. If someone says that this, this thing is gonna help you, this thing is gonna help reduce your pain, does the person offering that claim have a conflict of interest

financial or otherwise? Do they have any medical training that’s not always required for high quality information? You are not a medically trained person, but you have become a really, really good, you know, detect medical or information misinformation, spotting detective, I would say. But, but that, I think it’s an important important factor. If the person has any medical training, do they cite research? And most importantly is that research high quality. I mentioned cherry picking data, but I would also look at what is the source of the study they’re, they are pulling from, it could be from what’s called a predatory journal, which I’m gonna put some links to those in the chat.

But those are ones that kind of are known for for promoting pseudoscience and things that were not high quality studies. A great example would be they took 10 people. Let’s say I took, I could take 10 people with rheumatoid arthritis and they’re just 10 people I hand chose that are like doing really great and then get, assign ’em to my program and then at the end of it they’re doing great and say, look, these 10 people took my program and they’re doing great therefore my program is effective, we have to have a critical eye on that. ’cause you’re like, well, were they not doing well at the beginning? If they were already doing well and they’re still doing well, what, how do I know that this intervention is what caused the change? So being, being a critical thinker and is really important.

Are they looking at animal studies versus human studies? I see that all the time. People are like, oh, I saw this rat study. It’s gonna change everything in rheumatology. It’s like, just wait until it’s done in humans. So, that’s, that’s that one. What, you alluded to, how did, how did you develop your critical thinking around medical information?

[00:25:00] Eileen Davidson: Well, I had to build my medical literacy for sure, and it didn’t happen overnight. I was diagnosed in 2015. I was 29 years old, and like I said, I never really had any medical problems before. So being thrown into the world of rheumatology, very confusing. At first, my doctor was saying all these things that I could barely understand, and I wanted the easy.

Information, but the easy information isn’t necessarily gonna be the one that helps me the most. So what really, really helped me build my health literacy and also understanding how to spot that misinformation was. Being a patient partner in research, I’ve been on the Arthritis Research Canada Patient Advisory Board since 2018, so I’ve had the opportunity to not only attend the Canadian, but the American and the European rheumatology conferences where all the research is presented at, researchers from all over the world, rheumatologists, all these people, experts in rheumatology.

So that’s where I have learned what I know about rheumatology, not from a medical background, but being a passionate patient partner in research. And it has been one of the most beneficial things I’ve ever done in my life.

So I think. Giving a chance to dive into research, which is very difficult first if you’re coming out of it without a medical background, but giving it time. 

[00:26:31] Cheryl Crow: Yeah. I love that. I think your experience is very inspiring and, you know, I, I learned a lot of my ability to think critically about this stuff, not just in my graduate degree in occupational therapy, but we did have a lot of statistics and a lot of, you know, critical analysis of research studies.

But I also learned it in my undergraduate, I did, went to a very good liberal arts college, like called Vassar College, and it’s, I really think that they did a great job from the first year there. They, they kept saying, go to the source. Go to the source. So every single time you are, are going to make a claim about something what is the source of that claim ?And is there another explanation?

You’re almost playing devil advocate. You know, is there another explanation for why you think something caused something?

So, , I think we need to just for sake of time start concluding but I know this is something you and I could talk about for hours. But what do you think, Eileen is one in one sentence, the most important takeaway you’d like someone to take from this episode?

[00:27:30] Eileen Davidson: Well, actually, this one’s very easy for me, the most important takeaway I think anybody coming at this should know is if it sounds too good to be true, chances are it’s not true. Yeah, 

[00:27:42] Cheryl Crow: and I would just say go to the source. If someone’s saying that research shows blah, blah, blah, what is that research? What is it actually showing?

[00:27:49] Eileen Davidson: Mm-hmm. Well, I think we’re gonna have to end this very vibrant conversation. Yes. So thank you again for listening to another episode of Rheumer.

Has It. 

[00:28:00] Cheryl Crow: Yay. Don’t forget to check out the full show notes on the Arthritis Life website now, also on chronic eileen.com. I think I’ll let you’ve linked to them there. And you’ll have a full transcript plus video of our conversations there. 

[00:28:15] Eileen Davidson: Yeah, and we would also love to hear what you think about this episode.

Shoot us an email or comment on our social media channels, or if you have any recommendations of topics we should cover, let us know. 

[00:28:27] Cheryl Crow: Yay, we’d love to hear from you. Thank you so much. Bye-bye. 

[00:28:31] Eileen Davidson: Bye-bye.

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