What is the problem here?
Y’all know I have Long COVID, and of course, I’m in several online support groups. Last week I saw a whole spate of news articles with titles along the lines of “simple blood test can tell whether patients will suffer from long covid.” That would be really nice if it was true, wouldn’t it? To me, it sounded too good to be true.
As a librarian, you kind of build up instincts around the information pitched at you. We all sometimes get it wrong, and I don’t always have the energy or time to check out a piece before I post it. Sometimes I post things so I can come back and look at it later. Sometimes I post things I don’t trust just as an example of how bad things can be. I warn people that my posting a link doesn’t mean I endorse it. Sometimes people push back and educate me about how bad something is, and I’m grateful for those conversations. Sometimes I post something and say, wow, this is really bad, and then bots come out of hiding and jump on the post, trying to trick me into getting a conversation going. (That happened last week, and I ignored the ones that used polite language and reported and muted the ones that didn’t.)
Why does it matter?
For this piece, the first time I saw it, I didn’t have time, so I left it alone. It kept coming up, though, and other patients were saying they were going to write to some of the researchers mentioned and find out if they could get the test. There are so many horror stories I see in the LC support groups, of people whose doctors don’t believe them and won’t support them, of people who lost their insurance or their jobs because testing wasn’t available when they caught COVID and they were instructed to stay home, and now the people with the resources don’t believe they are genuinely ill. It seems that people with Long COVID fall into one of four groups: 1) those who tested positive by PCR, and have antibodies (a tiny minority of the community); 2) those who tested positive by PCR but never developed antibodies; 3) those who tested negative by PCR or couldn’t get tested but later were shown to have antibodies; or 4) those who tested negative by PCR or couldn’t get tested and never developed antibodies. Group 4 seems to be the largest group among the Long COVID support groups. Some of the Group 4 folk, like me, were lucky to have a clear documented exposure and were able to get a clinical diagnosis based on symptoms. Most are not.
People did exactly what they were told to do (stay home instead of getting tested or going to Emergency), and now they have been ill for months or over a year, and are suffering while basically being punished for having followed directions. By “punished” I mean they are being denied access to treatment, rehab therapy, specialists, time to rest, accommodations; their insurance is denying coverage; their doctors won’t refer them to treatment; their employers say they are faking it, and fire them; and they are being denied unemployment and/or disability because they are ‘choosing’ to not work. If you can’t prove you had COVID, you also aren’t eligible to participate in many of the research studies, and most of the important research studies on Long COVID are excluding the majority of the people with the condition, who were never able to get a positive PCR test, for whatever reason (access, ability, permission, timing, other). This creates significant flaws in the emerging research around Long COVID, because we have no path to discover what is different about this majority community of people with Long COVID who never tested positive, and we can’t learn if the treatments are different for them. Even more important, if we knew what was different about them, we might be able to predict who would develop Long COVID and protect them. Right now, the only way to be sure you won’t get Long COVID is to never get COVID.
You can see a test that could prove someone has or had Long COVID would open the door to services and resources and legal protections that many are absolutely desperate to receive. I attended an IOSH webinar last week on Long COVID and return to work in which one of the presenters, with deep emotion and expressiveness, said something like, “I don’t understand why we are requiring people to prove they had COVID before we will help them. They don’t want to be this sick.” But, for now, in many places, you still need to be able to prove you had COVID to get help, and there are people hanging on by the skin of their teeth waiting for a test exactly like the one described. That’s exactly the sort of audience that snake oil salesmen look for, desperate people, to take advantage and to find a way to monetize, either by getting them to pay for fake tests or fake treatments or through tricking them into loading pages of bad information stuffed with advertisements, or getting them to actually buy the things being advertised, or clicking through to pages that leave pieces of code on their machine that scrape information about them. Many people don’t stop to think that going for the best information isn’t just about wanting the good information, it’s also a security issue, and potentially a financial one as well!
Is it good, step 1: Who says so? Authorship
So, I wasn’t trusting this, and over the weekend, I took a closer look at the original posting I saw in one of my support groups, which was from a Nashville TV station. Not a source I would normally seek out for cutting edge medical information. Local news sources tend be absolutely brilliant at local news, and not so great with world news. WKRN got their version of the article from a place called StudyFinds, which has the tagline “Research in a Nutshell.” I found another copy of the article posted with substantial edits by the DailyMail in the UK, who at least tried to contact a few researchers to quote, but the DailyMail is, shall one say, not the most reputable news source in the UK? And a tad biased? Although they have been working on their reputation, a friend of mine from the UK still calls it the Fox News of the UK.
Curiously, the Daily Mail version of the article was published with a byline (Mansur Shaheen), the day after the StudyFinds version went live (if their posted dates are accurate). Daily Mail: “PUBLISHED: 17:52 EDT, 16 August 2021 | UPDATED: 18:14 EDT, 16 August 2021”; StudyFinds: “AUGUST 15, 2021.” I took a look and Mansur Shaheen published five articles last Friday for the Daily Mail. That’s a lot. I remember when I used to post five blogposts a week, and how exhausting that was. This piece was the last of four Mansur published for DailyMail on August 16. Yikes. Reading between the lines, it looks like Shaheen uses a strategy of finding pieces from other places and polishing them or revising them enough to claim authorship. That’s probably a really useful strategy outside of academia, but since I am an academic I can’t help but think what my profs would have said if I had tried something like this while in school, or what happens to researchers who take one of their own pieces and rewrite for another journal. This isn’t considered a strictly ethical strategy within the venues for high caliber evidence. It sure is taking me a lot more time just to do this one blogpost.
I’m still debating about whether Mansur Shaheen who writes for the Daily Mail based in New York City is the same Mansur Shaheen who is “Deputy Editor at SB Nation’s Pride of Detroit, Election Reporter for Bridge Michigan, Freelance Journalist,” but it seems likely. I don’t think this is relevant to the rest of the story here, but it just fascinated me to find a Michigan connection while working through this, and it speaks well of his work that Mr. Shaheen is proud of his work and has a strong online presence. But I’ve gotten sidetracked, and let’s get back to the Long COVID simple diagnosis article. In the StudyFinds version of the article the authorship is listed under the generic name of “StudyFinds,” but if you read the whole thing and go down to the bottom, you will find a contributing writer named Mark Waghorn. I couldn’t find much about Mr. Waghorn. There are a lot of people with the same name, several of whom are in high profile positions in other industries (finance, architecture, banking, sales, even a race car driver). I was able to find people named Mark Waghorn who are writers. They might be different people, or they might be the same person, I can’t tell. One is a playwright and another an automotive technical writer, but both are in the UK, so who knows? In any case, that I can’t find much about a writer of that name working in healthcare journalism inspires little if any confidence in the article.
Is it good, step 2: Who says so? Publisher
You can search that title phrase (“simple blood test can tell whether patients will suffer from long covid”) on Facebook and find several different news stations posting their own copies over the past week. All of these places appear to have gotten the article from StudyFinds, so I took a look into them. It’s a pretty good (as in well-camouflaged) click-bait news site, near as I can tell. I want to call them a fake news site, but that isn’t strictly accurate. They mix up a lot of true bits and pieces with hyperbole and misleading headlines and stuff the site full of advertising. They make it really hard to find the actual true bits and they make it hard to get off of their site. Their links keep pushing people to other pages on their site full of other ads. They farm these articles out via newswires where they are picked up by a lot of small local news sites. I’m not saying they don’t have some good information in there, I’m saying it’s hard to get to the good stuff and they are monetizing the audience and manipulating the reader to make more money off of them. This isn’t necessarily a bad thing, it just means you are getting what you pay for. They describe their mission as follows:
“StudyFinds sets out to find new research that speaks to mass audiences — without all the scientific jargon. The stories we publish are digestible, summarized versions of research that are intended to stir debate: We do not agree nor disagree with any of the studies we post, rather, we encourage our readers to debate the veracity of the findings themselves.”https://www.studyfinds.org/mission/
So who are StudyFinds? This is where things got really interesting. My first step was to look for their “About Us” page, who they say they are, their stated mission, and who’s writing for them. They actually have some real journalists as authors, but they also had a bit my radar latched on to which said pieces picked up from newswires and pieces from people who prefer to go nameless would be posted under a generic authorship. Guess what? A lot of their posts are under generic attribution.
I dug a little deeper. In the footer for the StudyFinds site, the copyright line goes to a company called “41 Pushups, LLC.”
Is it good, step 3: Follow the funding
Most companies, well, most legitimate companies, try to choose distinctive and unique names, so that when you search for them, you will find them and not other groups or information. When you search “41 Pushups, LLC” you find an awful lot of articles about how many pushups make for a good exercise program. It’s hard to find the company, but, hey, I’m a librarian.
41 Pushups, LLC doesn’t appear to have an actual official web presence (which is curious all of itself), but they did register their name. It’s curious that StudyFinds was founded in December 2016, and that the company that “owns” them was registered less than a year ago.
The address they are at is “8 The Green, Ste. A, Dover, DE, 19901.” There are a LOT of businesses at this address, or at different suites within the same building. The building doesn’t seem to be that big, but that’s because these are virtual offices. They have a legally registered mailing address in a state with desirable laws, and they can operate a business under those laws while in reality the company could be anywhere in the world. 41 Pushups, LLC appear to be one of the over 250 LLCs sharing a single virtual address in Delaware which are under investigation by the SEC.
Is it good, step 4: Who else says so?
So is the news article totally completely fake? Well, we don’t know at this point in the process. I tried to verify the authority and credibility of the author, the organization providing the information, and failed to find information that would do that to my satisfaction. I tried following the links provided in the article, and that wasn’t useful either. The next step is to try to verify the content of the article directly.
There are a lot of ways to look at this. I started by trying to find the researcher who is cited as having made the discovery, and this time that paid off. Sometimes it doesn’t. Sometimes it isn’t straightforward to figure out which of the people mentioned in the article are the person you want to find. In this the article, they quoted so many different people as having said different things, in the support groups, people were trying to contact any or all of them, or whoever was located near them geographically. Many of the quotes were taken from other articles, and were not necessarily solicited specifically for this piece. This means the effort spent to try to contact the organization or researcher will not only take up valuable energy for no purpose, causing harm for these vulnerable and exhausted patients, it will also take up time and energy for whoever receives the request for information who are likely to not actually know anything about this topic.
You can see some of my search process reflected in a Twitter thread I put together while I was feeling frustrated with all of this. I identified Mark Wills and Nyarie Sithole, both of Cambridge University, as joint researchers on this project, and looked for recent news with both names. I first found a local news report on the topic from Cambridge. Remember earlier where I said local news is really excellent for their own news? I won’t trust a Nashville local news report on science from Europe, but I will trust a Cambridge local news report about Cambridge discoveries. Even better was the next thing I found, which was an official press release from University of Cambridge.
Is it good, step 5: Who has the right to say so?
This is also interesting. You see, the official press release was published under a Creative Commons license. This gives other people the legal right to rework and republish. So far, that would make it seem like what StudyFinds did is legally if not ethically sound. However, there are several different varieties of Creative Commons licenses. University of Cambridge used a CC04 license: you can share and adapt the original, as long as you include “Attribution — You must give appropriate credit, provide a link to the license, and indicate if changes were made.” None of that appears in the StudyFinds version of the article, at least as far as I could see. I had to close 8 ads before I could try to print a reference copy.
Now, this assumes that the StudyFinds version of the article was actually based on the official press release. What if it wasn’t? As I kept looking, I found an article on this from the NHS, the National Health Service for the UK, but specifically from the hospital involved in the research. This was dated July 18, the day before the U. Cambridge press release (July 19). What makes me think that this might be the original source is that the photos used in the StudyFinds version are the same photos used in the NHS version. There was no license nor copyright statement included in the NHS post. I know in the United States certain types of information produced by the government are created free of copyright. I don’t know if this is true in the UK, but with some more digging I found out about “Crown Copyright,” which sounds similar. I wasn’t able to easily discover if the portions of Crown Copyright which make some information free to reproduce and modify apply to NHS information, but I did find that some NHS organizations apply this to some of their information, with restrictions like these: “Permission is granted to reproduce in any format for your personal and educational use free of charge, provided it is reproduced accurately and not used to mislead. Commercial copying, hiring and lending is prohibited without express permission.”
Is it good? The answer: Part maybe, mostly FAIL
So, there actually is an original source, which gets absolutely no attribution or credit in any of the pieces currently making the rounds. While I was eventually able to verify the validity of the core of the information provided, my efforts to do so raised many worrisome concerns about the original versions of the article which are being shared, concerns about ethics, legality, accuracy, and intent. So. Sigh.
Before I leave this, I want to point readers to the CRAAP test, which highlights five key elements to consider in evaluating information quality: Currency, Relevance, Authority, Accuracy, and Purpose. For this effort, I didn’t really consider currency, since all versions of the information are within the past few months. Ditto relevance. Where this became concerning was when looking at authority, accuracy, and purpose. StudyFinds took a press release about a research study that just begun, with the release focusing on that they now have the funding to do the study, and StudyFinds rewrote it to sound as if the study is almost done and the test will be available soon (ie. inserting inaccuracies and misleading information). They did so as clickbait to generate advertising revenue for themselves, while obscuring any link to the original information source. I call this a FAIL. The original information from the NHS and U. Cambridge was good, although not as exciting as StudyFinds makes it sound, but what came out of StudyFinds is nothing but clickbait.