Author Archives: pfanderson

Long COVID Resources: 1, Avoiding Long COVID

Posted on September 17, 2022 | 1 comment
Tips to 'avoid' Long COVID: #1: Dont' catch COVID! Riskiest time is the first 3 months. What to do 1: Radical rest whenever any symptoms worsen or reappear. What to do 2: Fluids, especially electrolytes. What to do 3: Pacing. What to do 4 & 5 DO eat healthy; DON'T push yourself.
Tips to Avoid Long COVID (a Long COVID Avoidance Infographic)

This is a question I’ve been asked fairly often throughout the pandemic, as awareness of long COVID increased, and as more people caught COVID. The past few months it’s been coming up more and more often. Now that I’m getting this question sometimes several times in a day, as well as getting lots of questions about pacing and brainfog (3 times in the past 24 hours!!), I’ve decided I really need to collect the resources I most recommend in places where they are easy for people to find and share.

This first post in this new series will focus on what we know or suspect about how to avoid having COVID turn into Long COVID. I’ve been waiting a long time for something official about this, but there isn’t a lot. There’s a lot of news articles, a little bit of research looking at the differences between people who develop Long COVID and those who don’t, and an enormous amount of discussion in the many patient support groups. I made a little infographic, and will discuss the high points in the rest of this post. (NOTE: I’m not this kind of artist, so please be kind, and feel free to make your own. I just did this because I hadn’t found anything else that does this.) FYI, I’m making the infographic open access and open source — make suggestions for updates and changes in comments to this blogpost, but if you want to modify the infographic, make a copy of the Google file. Also, remember, I’m a medical librarian and an emerging trends and technologies informationist, I am not a doctor (#IANAD).

Most Important Tip to Avoid Long COVID

The truth is that there is no way to really avoid getting Long COVID except by not getting COVID-19 in the first place. Everything else is about reducing the risk. So, trust me, you don’t want this, what can you do? Protect yourself, protect others, get vaccinated and mask up. Note also, that being vaccinated helps protect you from dying of COVID-19 or being hospitalized for it, but it doesn’t stop you from getting COVID or from getting Long COVID. It helps to reduce the risk, it is not a guarantee of safety. There is also an assumption in the general public and media that Long COVID mostly happens to “old folk,” but the data seems to show that this happens quite a bit in young folk. Not to mention that if you had COVID once, did not get Long COVID, that doesn’t mean you’re free now. If you catch COVID again (and again), each time you catch it, the risk of developing Long COVID goes up, and up. So, whoever you are, there is nothing that says you can’t get Long COVID.

The Riskiest Time for Triggering Long COVID

To be honest (again), we probably don’t actually know, but what the research articles discuss is usually three months. That may be simply because that’s a time period researchers like to measure. The idea seems to be that some people recover almost completely almost immediately. Other people recover , more slowly, but they do recover. There are different definitions of what counts as Long COVID depending on where you are in the world and who counts as your authority. Here in the USA, the magic line is three months. What this means is that. you can possibly be described as having Long COVID:

  • if you had COVID and never got better, OR
  • if you had COVID and recovered mostly but some symptoms lingered on, OR
  • if you had COVID and recovered, but developed new symptoms and health problems soon afterwards, OR
  • if you had COVID and recovered, were fine for a couple months, and then BAM, new health problems happened, OR
  • if you aren’t sure if you had COVID and didn’t have a positive test (because you weren’t tested), but had something maybe like it, and after that find that now you are really sick all the time …

It’s messy. It’s complicated. But the simplest way to explain this has two main parts:

  • 1. the longer it takes you to recover, the less likely you are to recover fully, and
  • 2. right after you first ‘recover’ (as in finish the acute phase of the disease) you’re at the greatest risk of doing more damage to your body.

What to do, Part 1: Radical Rest

This deserves a whole post and a deep dive, so I’m going to keep this simple for now. The single most important thing to do after having COVID is to rest. The phrase is RADICAL REST, because this isn’t as simple as just lay on the couch and watch TV. That’s actually too hard for many people, and will make them more fatigued. Also, different groups use the phrase “radical rest” to mean different things, but for people just starting out it’s probably enough to keep in mind that whatever you think resting is, do more.

Rest extra for the first 3 months after having COVID. Rest lying down, with eyes closed, in a quiet place. Rest whenever you feel tired or fatigued. Rest whenever your symptoms get worse or stronger. If your symptoms went away, and came back that’s especially important to notice, and rest. Rest if you feel weepy or angry or extra emotional. Rest if you have trouble finding the words, remembering things you know. Rest if you feel confused or have brainfog. Rest if you feel anxious, depressed, or stressed. These are all ways your body and mind are telling you to slow down, they need a little extra time to heal. Resting tells your body/mind that you are listening, you are paying attention, it can feel safe and trust you to take good care of yourself while focusing on healing.

REST!!! If you’re lucky, it won’t be forever, just a few months.

What to do, Part 2: Fluids

Please check with your doctor or healthcare provider for this part. Some people have been instructed by their doctors to limit fluid intake or salt intake. There are health risks associated with too much of either of these. You want to be sure that what you are doing isn’t going to make things worse, so check with your clinic.

Now, why push fluids? Why electrolytes, why add salt? A significant portion of people with Long Covid (#pwLC) are being diagnosed with dysautonomia and/or POTS (postural orthostatic tachycardia syndrome). There are pretty standard ways to treat this, and they work really for for many people. The main points are to push fluids, add extra salt (either in your diet or by drinking electrolytes), and wear compression garments. Also, be careful about exercise, and consider staying laying down for your workouts. If you are just starting your Long COVID journal, you hopefully haven’t yet gotten to the point where you would need this diagnosis. The idea here is that if you try some of these strategies a little early, maybe it won’t get as bad? As far as I know, there isn’t anything testing this idea, of trying POTS strategies as prevention, but you hear it a lot in the patient support groups, people share these tips, and many (not all) find them helpful whether or not they have a dysautonomia or POTS diagnosis. Yes, it’s anecdotal, but if it’s low risk for you, then consider whether it’s worth trying.

What to do, Part 3: Pacing

The basic idea behind pacing is to not just rest, but to be able to know when rest is most important. #MEAction created a campaign to try to help people recovering from COVID or who newly have Long COVID to learn how best to do this. Their campaign is called “Stop. Rest. Pace.” That’s the simplest way to explain the idea of pacing. Many people recommend keeping a diary of both your activities and your symptoms, and then looking for patterns. Of course, this isn’t going to make it easy for you, by having your symptoms worsen immediately after you do something that makes you worse. It’s complicated by the worsening often happening with a delay, anywhere from a few hours to a few days. Like with the section on rest, this deserves a deep dive and it’s own blogpost, so for now, here are a few resources just to help you get started.

#MEAction has a Pacing and Management Guide for ME/CFS which is very helpful also for people with Long COVID. The Bateman Horne Center (famous for their research on and treatment of fatiguing illnesses) has a ME/CFS Crash Survival Guide. It’s big and long, and hard to read if you’re in the middle of a crash, but there are a lot of useful tips and tools, including flashcards for when you are too tired to explain what kind of help you need. The idea is not that you would pick up and choose a card and wave it someone for help. The idea is that someone who is around you a lot would know about these, show them to you, and you can signal which is the right kind of help for right now. Yes, things do get that bad, where you can’t talk, can’t say the words you’re thinking, can’t think.

What to do, Part 4 & 5: Do (Eat Healthy) & Don’t (Push)

It would seem like eating healthy is an obvious thing to do when you’re recovering from an illness, but of course, COVID-19 is going to make it complicated. It’s not just “eat healthy.” They’ve been finding that people tend to recover better by including high quality protein in their diet. Some people start to react to certain foods, and find it helps to eat an anti-inflammatory diet. Some people find that having sweets or alcohol or caffeine or (God forbid!) chocolate can trigger a crash or relapse. Many of us are reacting to gluten or dairy. Better to give things that can cause problems a break for a few weeks or months rather than have it be for a long time or forever. “Eating healthy” while recovering from COVID-19 is both eating things that are healthy for your body, and also not eating (or drinking) things that can make your worse.

In the Long COVID support groups, we’ve noticed that many of the people were those who either couldn’t or didn’t know how to take a break, people who have become experts in pushing through tough times and doing whatever it was that needed to be done. This includes Type-A personalities, athletes, people who work in essential worker and manual labor types of jobs, parents of young children, caregivers of any sort, people who work multiple jobs to break even, and so forth. If you are tempted to say, “But I can’t take a break!” or “I can’t afford to rest,” stop. Stop right there, and think for a moment. What’s the worst thing that will happen if you don’t rest now? What’s the worst thing that will happen if you find yourself having to rest almost constantly for the next 900 days or so (like me)? Please, try to find a way to let yourself rest. Don’t push yourself. Don’t push through the warning signs. Pay attention. Listen to your body. If you have trouble taking breaks ask people around you to help you remember. If someone offers you a chance to sit down for a minute, take it. If people want to help, let them. This is not the time to prove how tough you are.

Thank You

I want to say thank you to all the many people in the #MEAction Long COVID-19 Group on Facebook who helped review early versions of the infographic, and suggest updates, clarifications, and corrections. Any remaining errors or confusions are my own responsibility.

Sources Listed in the Infographic

Sources:

Image credits:

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Posted in Health, Healthcare, Support, Science, Undiagnosed

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Syllabi Tips & Tools, part 3: More Open Resources & Examples

Posted on August 31, 2022 | Leave a comment
Syllabi Tips & Tools: Images of syllabus examples and tools by Buffalo Syllabus, Radical Hope Syllabus, Matthew S. Henry, & Crypto Syllabus

In preparing part one (tools) and part two (strategies) of this series, I found many other resources that just didn’t quite fit in a nice tidy bundle. So here, in part three, I’m going to share some of those additional resources and tools, as well as some examples which range from achievable to awe-inspiring.

MORE ON STUDENT-CENTERED SYLLABI

“The learner-centered syllabus helps students navigate both the content and processes of a course by focusing on experiences the students will have, rather than what the instructor will do. Such a syllabus helps students understand the context and need for the course, how you personally approach it as a teacher, what the major expectations of the course will be, and how the course will unfold.”

Adapted by Northeastern U. from Grunert O’Brien, Millis, & Cohen (2008)

The concept of a student-centered or learner-centered syllabus is not a new idea. It’s sufficiently standard that many educational organizations and schools have created resources to support teachers in developing content in this conceptual approach. What I’ve been focusing on in this blog series is applying newer cognitive strategies and technologies to the challenge, specifically in the context of creating a syllabus.

If you haven’t already seen Open Pedagogy, a collaborative approach to rethinking how higher education is approached and its dependence on commercial resources, you might want to take a look. They originated with the Open Faculty Patchbook project, and have a resource introducing this concept: “Collaborative Syllabus Design: Students at the Center.” Quite a number of universities have developed resources encouraging their faculty to engage with these concepts, and I’m delighted that my alma mater is one with a particularly rich set of resources. Iowa State University offers “Creating an Inclusive & Learner-Centered Syllabus” and the shortform “Seven Steps to a Learner-Centered Syllabus” as part of their broader resources on “Creating an Inclusive Classroom.” CSUN in California has both a how-to guide, “Design a Learning-Centered Syllabus,” as well as the useful “Learning-Centered Syllabus Checklist & Samples.” UC San Diego, UNL, and Cornell offer focused introductions, with Cornell’s including a number of templates to help get started. I was particularly delighted with the article, “Constructing a Learner-Centered Syllabus: One Professor’s Journey” by Aaron S. Richmond, which walks through the process from beginning to end in a very thoughtful and practical approach.

OPEN SYLLABI COLLECTIONS

Screenshot of the Open Syllabus Galaxy viewer. This is a visualization of over a million separate items included in various academic syllabi sorted by frequency and topic. It looks like clouds of colored dust. The example shown is the title "Why is Central Paris Rich and Downtown Detroit Poor?" assigned on 38 syllabi.

Any discussion of open access syllabi must include the Open Syllabus Project, even though it doesn’t (yet) supply full syllabi as independent pieces. Instead, it allows you to browse the full entries of content referenced in over (as of today) 7,292,573 syllabi, along with the value-added information of how many syllabi cite any particular item. This allows you to explore both the best hits as well as the long tail. I love that they’ve also made their code available in GitHub, for others who might want to design subsets or spinoff projects.

Open Syllabus Project

What the Open Syllabus Project doesn’t do, as far as I know, is separate out which of the items cited are open access and which require subscriptions or purchase. For that, I’ve included a list of open educational resource discovery tools.

For collections of actual syllabi to explore, try these sources. I myself am particularly fond of FORRT, but maybe you aren’t as interested in science as other topics. Each of these collections, except Campus Compact, tend to focus on a specific discipline or domain, which I’ve tried to make clear in the list.

OPEN SYLLABI EXAMPLES

Screenshot of the Crypto Syllabus
The Crypto Syllabus

In the other parts of this blog series, I mentioned a few stand-out examples of the type of syllabus under discussion, but I found a lot more, and just wanted you to have a chance to skim through these as well.

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Posted in Education, How To, Tools for Learning

“Undiagnosed”: Day 900 of Life with Long COVID

Posted on August 30, 2022 | Leave a comment
Screenshot of "How long ago was March 13th 2020?" Answer: 29 months OR 129 weeks OR 900 days OR ...
IMAGE: How long ago was March 13th 2020?

BACK THEN

It’s been a while since I’ve talked about my Long COVID journey here, but this nice round number was too tempting to pass up. 900 days since I came down with COVID, and still trying to recover. Who knows? You might get another post for day 1000. I’m fairly confident this won’t be gone and resolved by then. What’s the news? I’m a lot better … and … not really. It’s still a roller coaster, still good days and bad days.

Early in my recovery I was very proactive, got a diagnosis of dysautonomia way ahead of the curve because I had the symptoms, but really because I tracked down trends in the UK and my doc listened to me, so we knew what to look for. I also had a lot of really on target help and therapy early on, for the same reasons, and was able to get into neuro–rehab in October 2020 instead of the graded exercise programs that have broken so many people. I was told that to be able to work regularly on-site I’d need to be able to tolerate 5000 steps a day without triggering a crash. By February/March 2021 I was plateaued, and not making further progress. I also kept experiencing crashes, although they were a lot smaller and less often. We decided I needed more rest time to REALLY recover and make it to the next level. And that meant HR got involved, because I needed to access my extended sick leave. [Note: “HR” here is shorthand for the specific unit involved in this oversight, not “human resources.”] By April/May 2021 I was almost there, tolerating 5000 steps a day 3 days a week. This meant I was able to walk around the block I live on twice a day, once in the morning, once in the evening. Each circuit of the block was a half mile.

I was so excited, but HR decided I wasn’t recovering fast enough, and pressured me to switch from the neuro rehab to a program they selected. The case manager promised the other program had more resources, more monitors, more tracking, more everything than what I’d been able to access. I consulted with my team, and reluctantly made the switch, only to discover it had less resources, less tracking, etc. The poor therapist was managing 3 patients within each visit slot, switching from person to person and sending gofer assistants with instructions. Within a month of starting in the new program, I was completely broken, back to ground zero, starting over. The day that triggered all the problems, I didn’t see my therapist until the end of the session, it was all just gofers, who had me do .75 mile on one machine and .5 mile on a second machine within just over half an hour. You can see the crash on this chart. (You can get your own charts like these in a Long COVID toolkit I’m putting together [next LC post], but for now here’s a link to the blanks in Google Drive. Thanks & kudos to Kim Sommer who designed the originals for me [which I’ve modified], and said it was fine to share.)

Line graph charting step count for July 2021, showing a peak of just over 6000 on July 10, followed by a series of crashes, plummeting to around 400 by July 15.
IMAGE: Step Count for July 2021

Well, that was jolly. NOT. I’d been slowly increasing my activity tolerance levels, and now it was starting over, and I’d basically lost a year. It was clear to me and my new therapist that I’d been doing better with my previous therapist, in an environment with more personalized attention, more knowledge of neurological rehabilitation, and more options for equipment. He felt really bad about what happened. We both recommended switching back, but that was easier said than done. HR wasn’t a fan of the idea, and it took some negotiations and additional testing to sort that out, in a very messy way. To try to do that, I had to return to fulltime work to get out of the HR-managed rehab system, request a new referral, get on the waitlist for appointments, and start the whole process over as if it was new. Then, when I finally was able to get back to my original rehab therapist, insurance declined to cover anymore therapy. Why? Because I’d already “completed” rehab, when I switched programs. That this was a different diagnosis had no impact on their decision, although it should have.

NOW

So, now, who’s managing my rehab? I am, myself. Doing the best I can, but, to be honest, this is not ideal. I’m basically treading water. The rest of last summer, fall, and winter, I was trying to figure out what were the warning signs of having overdone things, because the big crash reset everything I knew about my body’s warning signs. I kept triggering crashes, doing less and less, and finally found a place where I felt relatively stable and okay. March, April, and May 2022 were okay, and making progress. I got to where even the days I crashed my step counts were mostly above 1000 steps. (Remember, my step count before getting COVID was 11,000? Be grateful for what you’ve got.)

Six line graphs, one for each month from January 2022 through June 2022. In these, the lows gradually increase from around 500 in January to over 1000 in May, prior to dropping back under 500 in June. There is a visible pattern of a peak followed immediately by a crash. The peak in January was just over 3000, February & March 4000, April and May 5000, and early June 6000. In late June, 4000 triggered another crash.
IMAGE: Step Count Charts from January 2022 to June 2022.

Eventually I started back to work in the office, first twice a month, then one day a week. This wasn’t because I was ready. I knew I wasn’t anywhere near the 5000/day recommended by my original rehab team, but I also felt like it was really important for my job to get back in the office sometimes. I also thought it was important to stretch myself and try new things, to get out of the house. I have a favorite seated cane now, and take it with me everywhere I go. I try to minimize the number of steps I take when I’m out, and to sit as much as possible. I try to schedule my days in the office on Fridays, so I can spend the weekend flat on my back, as much as possible. Going to the doctor just to get a blood draw a couple weeks ago looked like this.

Four panel comic: Panel 1 (P1): Before. Image shows an open laptop with a calendar onscreen. Conversation: Person 1: I'm about to leave for the clinic Person 2: Is that a clue you want help? Person 1: No! I can do it. Panel 2: 10 minutes later. Closed laptop shows stickers, one saying "My Disability is invisible, not imaginary." Conversation: Person 1: Mmm. Maybe. Person 2: ??? Person 1: OK, could you help me? Person 2: Sure. Panel 3: After. Image shows a sidewalk heading toward the vanishing point, bordered by a fence on one side and a street with a bicyclist on the other. Voice: OK, Mom, we're almost there. Yu can do it. Keep going! Panel 4: Shows legs angled toward a vanishing point tipped by feet pointed up under a striped blanket. Conversation: Person 1: Should I prop your legs up higher? Person 2: OK. Person 1: Do you need more blankets? Person 2: OK. Box text: Would you believe it's summer?
IMAGE: Long Covid Comics: 1: I need help sometimes

Now, to be fair, I tried to take a business trip a few weeks before. My first time traveling on my own since the pandemic started. This was going to the Graphic Medicine conference in Chicago (which I also need to blog about!). I wouldn’t have been able to handle the trip if the wonderful MK Czerwiec hadn’t made arrangements to lend me a wheelchair and organized volunteers to help push me around. I’m still recovering, although I didn’t crash too badly after that. During the travel, I managed to keep my steps under 4000 steps a day, barely, and that was evidently the threshold to watch for, at that time.

4 panel comic. Panel 1 (P1) shows 9 folk in zoom. P1 text: "We gather in Zoom Rooms" P1 dialog: "How are you today?" P2 text: "from all around the world, some in day and some in night" P2 dialog: "Fine as long as I'm sitting" said by 2 folk at once. P3 text: "and even tho our symptoms are all different" P3 dialog: "JINX!" by 2 folk at once. P4 text: "we make each others' lives a little brighter." P4 dialog: [laughter] from all
IMAGE: Long Covid Comics: 2: In-Joke (“Fine, as long as I’m sitting”)

The end of July, a month ago, there was a day I crossed 4K, and I don’t seem to have come back out of that. It’s really hard to tell what triggers a crash, and how long the crash lasts, and when you’re back out. A bad day is when I can’t sit up for the whole day. A good day is when I can, and maybe do a load of laundry or make myself dinner. Anything more than that is awesome. And I am TOTALLY working my way up to awesome! Except for the days when I feel like I just can’t do this any more. Except for that. Still, those of us in the Long Covid support groups still have our own in-joke: “I’m fine, as long as …”

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Posted in Health, Healthcare, Support, Science, Undiagnosed

Syllabi Tips & Tools, part 2: Strategies

Posted on August 30, 2022 | 1 comment
Syllabi Tips & Tools. Images of syllabus examples and tools from Charleston Syllabus, Lynda Barry, Nick Sousanis, & Kayla Wheeler

The first post in this series focused on tools for creating classic syllabi from templates, and highlighted open source tools for this, especially in GitHub. New trends in syllabi creation are taking practices from open science and social media. Collaboration is the name of the game (collaborative pedagogy), along with multimedia, dynamic content, and transparency and openness (more on this last bit in part 3 of this series). These approaches are particularly relevant in light of the ever increasing financial costs associated with traditional textbooks and the new proposals from major textbook publishers to utilize NFTs as part of increasing profits from textbook resales as part of their strategy to phase out print textbooks.

New-ish strategies for approaching syllabi (because these have actually been around for a while) focus on fostering engagement through visual and graphic approaches as well as collaborations either with the students in the course, other faculty, or even the public. This can help lead course content toward similar strategies, such as open educational resources (OER), open textbooks, open science, Creative Commons licensed materials, YouTube and public-facing multimedia, student created content, student-centered learning, public domain content, and utilizing public libraries and open libraries in addition to your local academic library. While using these strategies for a syllabus isn’t the same as using them throughout the entire course, these can be ways to begin building skills and comfort toward applying these skills in a broader educational setting. These and other concepts are mentioned in ProfHacker’s post on Creative Approaches to the Syllabus; Beckie Supiano’s The Student-Centered Syllabus; and Hua Hsu’s A Celebration of the Syllabus.

Visual Syllabi

If I could give an award for visual syllabi, it would have to be a tie between Lynda Barry and Nick Sousanis.

Screenshot of the cover of Lynda Barry's book, "Syllabus." The image shows a standard college essay hard bound notebook adorned with a large yellow sticker on which has been written the word SYLLABUS along with various doodles of a cat, spaceman shouting HELLO, spirals, geometric shapes and borders, and other colorful patterns.
The cover of Lynda Barry’s book, “Syllabus”
Sample image from Nick Sousanis' comic-style syllabus for his Fall 2022 Comics and Culture course. Drawn images spiral down the center of the page as a timeline indicating the theme of each class session. These are framed on both sides by stylized text with brief blocks of information on various categories, such as readings, materials, assessment, final project, etc.
Sample image from Nick Sousanis’ comic-style syllabus for his Fall 2022 Comics and Culture course.
Images by Lynda Barry (left, her book SYLLABUS) and Nick Sousanis (right, Fall 2022)

Most of us won’t be able to create visual or graphic syllabi with the sheer visual impressiveness of either of these two professional comics artists, so lucky for us there are other approaches to making visual syllabi, such infographics and templates. There are descriptions of how to take your existing syllabus and redesign it as an infographic, as well as instructions for working with specific tools, such as Piktochart, Canva, LucidChart, Mural, Visme, and there are probably more like these. Several universities and schools have offered tips, templates, and guidelines for making these: U. Rhode Island is particularly rich, but you may want to also look at these examples from Leeward in Hawaii, Oregon State, and Memorial University. I want to include a few examples outside of strictly higher ed framing since there is so much creative work happening in other spaces as well. Just a small sampling Español III; Geography 3350a: Environmental Change; Philosophy Syllabus As Infographic; and SGPS 9500: The Theory & Practice of Teaching and Learning in Higher Education. You might also be interested in this article by A. Kaur, “Dope Syllabus” examining the impact of a visual syllabus on students, for which the figures are available from ResearchGate. And here’s a free Creative Commons licensed course syllabus infographic template in Google Draw from Lit and Tech.

There are many reasons given for redesigning syllabi in a more visual format — increased interest in the content, visually engaging, using different parts of the brain and memory for increasing retention, encouraging students to actually read the syllabus, and more. Part of the goal is to save the teacher time by having fewer students asking questions for content that actually IS in the syllabus. Including a visual approach can help make a syllabus more accessible to students with some kinds of learning disabilities, but can also be less accessible to students with visual perception disabilities. Of course, if using color, one must also consider visual color-blindness as part of accessibility. There is no one size fits all, so consider trying different approaches, and keeping a text-only backup copy for those students who don’t benefit from graphics.

Collaborative Syllabi

What seems to be the most impactful form of syllabus collaboration for the faculty would be a toss up between partnering in public on discovering resources and developing course structures, and then collaborating with the students in the course. The #AnnotatedSyllabus trend really took off during the pandemic, with the biggest payoff coming from the actual student engagement. Put your syllabus in a Google Doc, and give the students permission to comment. Then step back out of the way while they answer each other’s questions. Doesn’t that sound appealing? Likewise, how frustrating is it for both teacher and student when the syllabus is updated, and people don’t notice the change? When the syllabus is a living document, and students are instructed from the beginning to check before beginning any assignment, that can also be powerful. Here’s a fabulous Twitter thread from the person who really kicked this idea into high gear.

Tracking the hashtag is another great way to pick up tips from all the faculty who’ve adopted this idea and watch them literally gushing over how much it’s improved their lives. Here’s another great tweet with myriad responses on how to use Google Doc syllabi to engage students, with more tips from Open Academics.

Twitter Hashtags for Syllabus Generation and Resource Discovery

Expanding on the collaborative approaches to syllabi creation, a trend the past few years is to create a hashtag for critical topics or emerging events, and collaboratively post resources on that topic as Twitter streams. What usually happens then is that a few people emerge as leaders, and will take on an official curatorial role in selecting, organizing, and compiling the content. The primo example of this was the Charleston Syllabus, which was actually published as a book from the University of Georgia Press. There have been a number of papers commenting on this concept (here’s one), and collections. I haven’t found any of these hashtag syllabi on science or medicine or related topics, but I would love to see, for example, a #LongCovidSyllabus or something like that. That said, here are a few I have found.

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Posted in Education, Tools for Learning

Syllabi Tips & Tools, part 1: Generators

Posted on August 25, 2022 | 2 comments
Syllabi Tips & Tools: Images of syllabus examples & tools by Caleb McDaniel, GitHub, Bernhard Bieri, UM Engineering NEXUS

A few weeks ago Bryan Alexander, an educational futurist and UofM alum, posted on Twitter about a syllabus tool he’s found recently, as he often does. He preferentially posts about educational technologies and the future of higher education, so he’ll sometimes post links to syllabus tools, strategies, and syllabi he’s found online. (He posts a lot about games in education, too, but that’s for another post.)  Since I know folk on campus working on creating a prototype accessibility statement for faculty to use in their syllabi, I immediately asked Bryan if this tool (by Caleb McDaniel at Rice University) includes an accessibility statement, which led to a discussion, some exploration, and then I was off and scampering through a rabbit hole, leading to this blogpost.

McDaniel Syllabus Makers

Screenshot of the Generic Syllabus Maker by Caleb Daniels

The generic form of the Syllabus Maker asks you to put in temporal specifications for the course you are teaching (year, first day, last day, days of the week the course is meeting, preferred date format). It then generates a list of dates on which the course would meet. The professor would then need to add all the other syllabus content, and remove dates that appear on holidays. 

Screenshot of the Rice Syllabus Maker

The branded version of the Syllabus Maker has been customized for the specific school, in this case, Rice University. 

They provide links to the syllabus standards for their school: Required elements, sample statements, Title IX statement language, sexual misconduct statement, religious accommodation statement, Honor Code, Disability Services Statement / Accessibility Statement. They also offer the option for the faculty to fill in the same elements from the generic version, and then the professor has the option to download a template they can populate with content. 

“Fill out the form to receive a list of all the dates when your course will meet during the specified semester. Alternatively, you can download a syllabus template (in Word, LaTeX, or HTML formats) prepopulated with a class schedule and other required information (such as Honor Code and Disability Services statements). This application uses the academic calendars posted by the Registrar to determine when classes will be cancelled for holidays or University recesses.”

Now, the fun part. Caleb has made their source code available on GitHub, so other places can modify, adapt, fork, customize, etc. 

More Syllabus Generators

Curiosity may not kill the cat, but it certainly can lead to … a reallocation of one’s time? I discovered there are in GitHub, unsurprisingly, many other open source / open code syllabus creation tools, be they called a syllabus generator or maker or builder or template or creator. These have various levels of detail, may focus on specific topics or skills, or other contextual elements that modify their utility. 

There may be even more in the topic collections, if you browse deep enough. 

There are other open source toolkits beyond Github, such as this “Writing Your Syllabus” toolkit for the hardcore geeks on writing a syllabus in R, the programming language. There are also other schools which have created syllabus generators but may or may not share the code, and which often require a login from their own faculty to access the tools. 

I’m frankly surprised there aren’t more commercial syllabus generators, but I found a couple — ClioVis and Simple Syllabus (with Canvas).

UofM Hosted Syllabus Resources

After finding all these wonderful resources from other places, I wanted to know if there are similar tools or resources closer to home. This is what I found. Let me know if you find anything else!

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Posted in Education, How To, Tools for Learning

EIEIO – Graphic Medicine in Old McDonald’s Classroom

Posted on May 18, 2022 | Leave a comment

Screenshot: Graphic Medicine website header

Screenshot: NLM Exhibit: Graphic Medicine: Ill-Conceived & Well-Drawn

[NOTE: First published at https://slowchathealth.com/2022/05/13/eieio-graphic-medicine-in-old-mcdonalds-classroom/ ]

At GraphicMedicine.org one of the first things you’ll see is the definition: “Graphic Medicine … explores the interaction between the medium of comics and the discourse of healthcare.” The Graphic Medicine exhibit at the National Library of Medicine (NLM) opens with: “Graphic medicine is the use of comics to tell personal stories of illness and health.” So, comics, cool, yay! But healthcare? That can get tough, as you know. It’s not easy having mental health challenges, a chronic condition, living with pain or a disability, just feeling like you’re different from the people around you. It’s not easy talking about it, especially when you don’t see anyone else around who is like you. There are also topics that are just … difficult … for almost everyone! (Ahem, sex?)  

Engagement & Discovery

One of the superpowers of comics and graphic novels is the way they draw the reader into the story, and make content understandable that is difficult to put into words. For teaching health, using comics seems obvious, but first, does the content you need to teach already exist? To get started, here is one on teen pregnancy from Indigenous Story Studio. School Library Journal has a good starting selection, and so does the Network of National Libraries of Medicine.  Of course, always ask your friendly neighborhood librarian for more ideas. 

Information, Issues, & Awareness 

Is there a hot news topic you want to teach? The Nib is a comics journalism site that includes short pieces on health topics. We Need Diverse Comics is great to finding comics content on social justice topics. There are comics ranging from mental health to disability, how people respond to gun violence, anti-racism, police brutality, and so much more. Specific health topics available in comics for middle school and high school include sex education, anxiety, asexuality, cancer, diabetes, food, more mental health (and more cancer), and even pieces around what life is like working in healthcare professions. Choose excerpts carefully, as not all are age-appropriate. Comics anthologies can be good sources for short pieces you might select as a prompt for awareness or a class discussion, and many comics artists are putting short pieces on Instagram, like CancerOwl. YALSA has a great list with many examples, expanded yearly (2021, 2022).  

Enrichment & Visual Literacy

Comics are known for being engaging and accessible, but this is more true for some than others. Our culture is shifting toward visual and multimodal literacies, and comics are part of that. Helping kids learn to work with and critically examine visual content adds extra importance to the content. Brian Fies’ book, “Mom’s Cancer” is a personal favorite for examining how visuals communicate content differently than text. Some of the questions you might pose for a class or an assignment could include: 

  • How do the colors impact your reading or support the topic? (compare the use of red in Dumb and Go With The Flow)
  • Where is the artist drawing your attention in this panel/frame? 
  • How does the style communicate emotion? (Compare Haines and Brosh on anxiety)

Investigation & Analysis

Here are a few assignment or project ideas for applying critical thinking approaches to 

  • Write a review of a title. 
    • Is it accurate, both medically as well as telling an honest story? How do you know? 
    • Who wrote it and why? Are they trying to inform you or persuade you or something else? 
    • Do you agree or disagree? Do you have a family or personal experience with this topic? Does that change how you read it? 
    • Do you like or dislike the art style? Does it work or not, and why? 
  • Do a deep dive into a single page or frame analyzing how visuals support the message
  • Do the words and the images tell the same story? 
  • Create a response to some aspect of the work being read, and provide evidence for any health claims 

Original Works & Creation

Sometimes there are students who want to make their own comics. There are prompts for assignments from 1-6 panels. When it happens, I’ve found team approaches and co-creation really powerful. First, they allow people who are good with words and those good with art to collaborate and both work from a position of strength. Small groups also work well, developing a consensus story around a topic or issue. Try having two different teams draw a scene from different perspectives (eg. doctor/patient), and then discuss how they differ and why. 

Prompts: 

  • What do I wish … 
    • … my doctor/HCP knew or did different? 
    • … my parents or family understood? 
    • … my friends understood about your health (physical or mental)? 
  • When I [X], it feels like this in my (body, mind, emotions) 
  • In this scene, show each of the five senses
  • Once upon a time, [X] happened

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(un)Diagnosed: Day 731 (24 Months, 104 weeks) – Happy COVIDversary (Da Brain iz BACK)

Posted on March 14, 2022 | 1 comment
Proof of a functional brain. Grid of screenshots showing successful game play results from Wordle, Numberle, Chordle, Quordle, and Wordle. The images are dark mode, with gray, yellow, and green on black.
Proof of a functioning brain?

Today is 2 years since that first distinctive tickle in the back of my throat that heralded in a small way what was coming. That was the day then-President Trump declared a national emergency for COVID-19. Now, that strikes me as having a peculiar irony, but I’m not sure why, precisely. It’s almost like a gong was ringing, and I couldn’t hear it. I remember thinking, “Whatever happens, we’ll be okay. We’ll figure it out. Take a deep breath and just keep going.” It was sort of true, in some ways. And, in a lot of ways, it was really far away from true. COVID-19 and I have kind of grown up together, I guess, in a sense. Do we call this good enough? 

In the Long COVID / COVID long haulers / people with PASC communities and support groups there is a special bond between those who identify as first-wavers. None of us expected to still be sick, those of us who’ve made it this far. I particularly didn’t. I looked at the research of long-term sequelae after the first SARS-CoV. It was easy to find back then, because there was so little on SARS-CoV-2. Now, I just went back to try to find that early research I’d consulted, and it’s almost impossible to sift through. For example, there are over twelve THOUSAND articles in PubMed when searching for “SARS sequelae.” If you add a date limit to find those before 2019, there are fewer than 400, and most of those were written in 2003-2005. That’s intense. Surreal. What I remember now of what I found then is that there clearly was something similar to Long COVID. Most of the folk who developed this after the first SARS recovered within a year, most of the rest recovered with the following year. By the second anniversary of the initial infection, 1% or less were still ill. I was counting on that. This whole time, I’ve been counting on that. I was determined to be one of the folk who recovered fully by the end of year one. Then I wasn’t too worried, because I still had year two before I should be worried. Right? Right. I told all my rehab folk not to worry, because I wasn’t worrying; I was going to be one of the folk who recovered.

I actually was recovering really well for a while. I’d tracked all the research and recommendations from other countries who were ahead of the USA in figuring this out. I went to my docs early on, and shared what I was finding. We got me the dysautonomia diagnosis faster than most folk are getting it even now, for those developing problems from Omicron infections and other recent varieties. I was able to get a referral to neuro-rehab pretty early, and that was showing good results for people. It was painfully slow, but it helped me make progress, too. Neuro rehab had a goal for tolerated activity levels that would have permitted me to go back to work in the office: 5,000 steps a day, 7 days a week. If I could do that, I could do most (not all) of what I was doing before I got COVID. I was at a point where I was walking 5,000 steps or more 3-4 times a week. Last May, I was looking at the light at the end of the tunnel, and getting excited about going back to work.

I’m going to skip part of the story, so I don’t get into trouble, but the short version is that I was persuaded against my better judgment (by persons involved in my treatment planning but outside my medical team) to switch rehab. The new rehab place had been misrepresented, didn’t have the kinds of resources available where I had been going, especially not staffing, and within a month of starting at the new rehab place? I’d been knocked back into a major relapse, starting over from ground zero. It was bad, really bad. I tried to switch back to my previous neuro-rehab. I finally got back in four months later, and then insurance decided they wouldn’t cover it. I’ve been left pretty much to my own devices since then. Skipping a bunch of nitty gritty details I’m sure you don’t really want to hear, I’m now back up to 2000-3000 steps 1-2 times a week, and most important, the brainfog almost completely went away last December. It was a special day when my boss said it was like talking to the before-times me. (See the opening image for my bedtime ritual. Many long COVID folk are playing games for a kind of self-prescribed DIY cognitive rehab / brain retraining.) Being impatient, I’ve been trying to go back to work in the office anyway. Once in December. Once in March. I’m determined, I’m going to get there.

As far as counting my recovery progress, I’m now counting from the relapse, not from the initial infection, so I figure I’m going to be pretty much fully recovered by this time next year. That’s the plan, anyway! Meanwhile, I had some conversations with folk who were also diagnosed with dysautonomia, and who said they were able to recover fully within, oh, about eight years. I’m seeing people with long COVID who got it after me, and have recovered. Folk teaching yoga classes, folk working on busy hospital wards, folk traveling internationally. All those folk were as sick or sicker than me, so there absolutely is still hope.

A lot of the folk who aren’t recovering weren’t as lucky with me for having access to information, diagnosis, treatment, etc. It’s just dandy for docs to tell folk they need to wear compression garments, but if they aren’t covered by insurance and they lost their job while sick with COVID, how are they supposed to get them? Ditto electrolytes. People who are now without income are being told to drink a half gallon of more of electrolytes, and they can only afford a pint or a quart a day of whatever sports drink they know probably fits the bill. No one is mentioning to them that they can make this at home, and giving them a recipe. Many folk have challenges with memory and executive function now, meaning that telling them something and pulling the brain together enough to make it happen are completely different things. Pacing is another critical concept that isn’t being mentioned to many of these folk, and over the counter things to consider trying, like anti-histamines. So, pardon me, but I’m going to drop a few (highly selected) links down at the bottom of this post for folk who aren’t sure where to start. And if anyone knows of a swapmeet / mutual-aid type of resource to share compression garments that didn’t work for the original owner, please let me know, and I’ll help spread the word.

LONG COVID RESOURCES

General

Long COVID Physio: https://longcovid.physio/quick-access

Long COVID Support (UK): https://www.longcovid.org/

Long COVID Support (UK): Resources: https://www.longcovid.org/resources/patients

World Physiotherapy briefing papers: https://world.physio/covid-19-information-hub/long-covid

Twitter thread of Long COVID Guidelines (start here): https://twitter.com/pfanderson/status/1465440816349028356

Helpful for Many (but check with your doc)

Dysautonomia & POTS

Dysautonomia International: For Patients: https://www.dysautonomiainternational.org/page.php?ID=36

Dysautonomia International: General Information Brochure on Orthostatic Intolerance and its Treatment, by Dr. Peter Rowe https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

Pacing

#MEAction: Stop. Rest. Pace. https://www.meaction.net/stoprestpace/

Long COVID Physio: Pacing: https://longcovid.physio/pacing

Post-COVID-19 Interdisciplinary Clinical Care Network: Fatigue in Post-COVID-19 Recovery: Pacing: http://www.phsa.ca/health-info-site/Documents/post_covid-19_fatigue.pdf

The Why, When and How of Pacing | Long Covid’s Most Important Lesson https://www.youtube.com/watch?v=gUPvNwvkOlA

Your COVID Recovery (UK): Managing Daily Activities: https://www.yourcovidrecovery.nhs.uk/your-road-to-recovery/managing-daily-activities/

Recipes for DIY Electrolytes & Oral Rehydration

Dartmouth-Hitchcock Comprehensive Wound Healing Center: Oral Rehydration Solution Recipes: https://www.dartmouth-hitchcock.org/comprehensive-wound-healing/oral-rehydration-solution-recipes

University of Virginia Health System: Homemade Oral Rehydration Solutions: https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2021/01/Homemade-Oral-Rehydration-Solutions-9-2018-1.pdf

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Posted in Undiagnosed

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Ten Tips for Being a Patient

Posted on September 22, 2021 | 2 comments
Photo of a large red button labeled with the text "Push for Help."
Flickr: RosefireRising: In the Doctor’s Office — Push for Help

I was asked for what I tell people before they see a new specialist for a new icky diagnosis. My top ten tips for being a patient.

1. Bring a friend with you. They’re there to support you, to validate your story, to listen and hear things you might not notice, to provide a second perspective before/during/after.

2. Take notes. At the very least, date, time, place, who you met with, what questions were asked, what answers were given, what tests were taken, and how to find the test results. (This is especially necessary if you are in a crisis situation or the emergency room, but it’s hard to do under those circumstances. Make a habit of it now, and it will be easier to do when you need it most.)

3. Who else can help take notes? Ask the person who comes with you to take notes for you. You’ll have a hard time remembering, no matter how brilliant your memory is. You may want to ask if you can record the conversation to listen to again later, but a lot of healthcare folk are uncomfortable with that, and they don’t know you well yet, so if they say “no” it’s really not a surprise.

4. Ask the doctor to write out or spell words that are unfamiliar to you. Also ask the doctor for alternate words that describe the same idea.

5. Have a list of your questions before you arrive. Prioritize the questions. Pick your top three (because the doctor probably won’t have time for more).

6. Ask people for more question ideas. If your brain is frozen and you can’t think of what questions to ask, try searching, “What should I ask” or “top ten questions to ask about” with the name of your diagnosis. You might also try searching “new diagnosis” with the name of your diagnosis.

7. Use questions to engage & build trust with your doctor. When you do research in advance, some of it will raise questions. If you bring in info to ask about, try asking your doctor questions like, “Is this good information for me? Why or why not? What would you recommend instead or in addition?”

8. Ask the right question for the right doctor. Keep in mind that you’ll probably see a whole bunch of different health care folk, and not all of them are good at answering all questions. If you aren’t getting the answer to a question that is helpful for you, ask “Is there someone else of whom I should ask this question?”

9. Read the fine print, and read your records. If you need extra time to read it or think things through, you should have the right to take whatever time you need. You also have the right to ask for copies of your medical records, and there shouldn’t be a charge, or only a minor charge. If you don’t have the time or energy to read your records (I totally get it, it’s exhausting), do you have a trusted friend who can help you review these? Mistakes creep in under the best of circumstances, and things go better when you catch errors quickly.

10. Find a patient support group with people who are kind and generous. Being angry is completely okay as long as they don’t get stuck there. You don’t want a group that spends a lot of time censoring discussion, but you also don’t want a group that lifts up misinformation. It’s okay to join different groups until you find the right one for you. You don’t have to talk. You can lurk until you feel comfortable talking. You can search the archives to see if someone else already answered your questions.

Most of this is in the book Nancy Allee and I wrote 20 years ago — Medical Library Association Encyclopedic Guide to Searching and Finding Health Information on the Web. There you go — this is the Cliff Notes version.

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(un)Diagnosed: Day 550 (18 Months, 78 weeks) It’s not over until it’s over … 

Posted on September 13, 2021 | Leave a comment
A square of white notepaper on a dark blue fabric background. The notepaper is folded into quarters, and in each quarter is roughly sketched an eye. Top left: a colorful eye with a rainbow iris; top right: a gray eye surrounded by purple, blue, and green; bottom left: a half closed eye showing lavender whites and surrounded by thick gray; bottom right: a closed eye.
A sketch I drew of Long COVID for a workshop during the Graphic Medicine Unconvention, August 13-15.

It’s been a while since I did one of these updates, and a lot has happened. And nothing has changed, or … at least it feels like that some days. Today it is 18 months since I developed the first symptoms of COVID, 500 days. It’s starting to feel like … forever. It’s funny, because I was so hopeful and determined for so long, and now I’m not. I’m much better, but part of me is giving up. The closer I come, the farther away ‘normal’ seems.

The drawing at the head of this post is one I drew during a workshop for the Graphic Medicine Unconvention. I have hand tremors now, better some days, worse other days, but the quavering in the lines is that, the tremors. It made it hard ro draw, and I wasn’t sure I could draw anything at all, because the tremors were pretty bad that day, but I decided I could draw cartoon eyes. I grabbed felt tip markers, and tried. Expert storytellers say to start your story before everything changed, when things were normal. That’s the first eye — all colorful, bright, vigorous, full of Spring and colors and energy. The second eye shows the early months, the acute COVID phase, and the first many months of the long COVID experience, when I was constantly bitterly cold (except at night, when I was burning up). I cut my hair extra short in December, but no one noticed until mid-summer, because that’s when I finally stopped wearing winter hats indoors all the time. The third eye is half asleep to show the fatigue and brainfog. The last eye, the fourth one, is closed, just a few chicken scratch black lines, to show both the extraordinary amount of time I spent sleeping over the past many months, but also the times I just wanted to die. I’m pretty sure I’m past that, or I wouldn’t be mentioning it, and let me tell you, my family is more than ready for that part to be done, but when I drew this it was still a far too vivid memory.

In some ways, I’m a lot better now. In some ways, I’m not. I’ve just been approved for a graduated return to fulltime work. I’m supposed to be back fulltime in two weeks. Cognitively, I’m ready. Brainfog is rare now, and I’m cognitively more clear than I was even a couple months ago. My cognitive endurance is much better, and when I push things too much, I bounce back faster.

Physically, I’m not remotely ready. I was almost ready in June, but then there were some problems with my being switched to a different rehab program to speed up the process, and instead it knocked me back several months of progress. It’s a long story, and I don’t want to talk about it, so don’t ask me. It’s enough to know it was bad, really bad. At the time, I was walking about 4500 steps a day. Nothing like the 11,000-12,000 I was doing before COVID, but enough that I could probably get to and from the office on public transit. I felt great. I felt like I had so much energy. I was so hopeful. After the crash in early July, I was knocked back to 700 steps a day, and I spent a month crying every day at some point. Pacing is absolutely critical for Long COVID folk like me, with predominantly neuro symptoms. Part of pacing is figuring out your warning signs. After this crash, they all changed. I couldn’t tell how to know when I’d done too much. I felt really lost. Things gradually started to return to something I recognized, but it took a long time. After two months, I’m now up to about 1500 steps a day. This is not enough to get me to the corner drugstore and back safely, but I’m working on it, and hopefully in a few more months, I’ll be back to the 4500, and able to try to go to campus again.

Okay, enough of that. It still looks like I will eventually recover to a level that will allow me something resembling a normal-ish life. I remember telling my neuro rehab therapist during the first appointment, “I want it back. My life. I want it ALL back!” I wouldn’t say that now. I do think I’ll get back to everything I used to do, just not at the same level or speed I used to do it. And there are silver linings. I used to have an uncontrollable vocal fry that made me have to stop singing, and the treatments I’ve been doing have given me back part of my singing voice. Not much, but at least I can enjoy singing in choir again. I’m grateful for that!

Overall, healthcare doesn’t know much about COVID or Long COVID, but they have learned a lot really fast. There is more coming out all the time. As you might imagine, I’ve been keeping an eye on this. I’ve been collecting a lot of clinical guides, best practices, interviews, etc. I’m going to put those in a post, but not this post. In a few days. I have all sorts of goodies to share with you!

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Long COVID in the News, Good or Bad? A Case Study

Posted on August 23, 2021 | Leave a comment
Screenshot of the WKRN article on easy long COVID diagnosis which is linked in the blogpost.
I started here, with the WKRN version of the article, trying to answer, is this good information?

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.

Screenshot of the four articles written by Mansur Shaheen for Daily Mail on August 16, 2021.
Screenshot of the 4 articles posted to the Daily Mail by Mansur Shaheen on August 16.

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.”

Screenshot of the footer of Study Finds, with the copyright statement "(c)2021 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.

Screenshot of the Bizpedia page for 41 Pushups, LLC as of August 23, 2021, showing a filing date of September 21, 2020 and a business address of "8 The Green, Ste A, Dover, DE 19901"
Screenshot of the Bizpedia page for 41 Pushups, LLC as of August 23, 2021

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.

Screenshot of the satellite view of the address for 41 Pushups, LLC shows the building near the intersection of South State and The Green in Dover Delaware. The building has a flat roof and appears to be barely larger than the crowns of the surrounding trees.
Screenshot of the satellite view of the address for 41 Pushups, LLC and over 250 other businesses.
Screenshot of Google Streetview for the address 8 The Green Dover, DE 19901 shows a 3-story brick building with windows and shutters on what appears to be a residential street with limited parking and many trees.
Screenshot of Google Streetview for the address associated with 41 Pushups, LLC and >250 other businesses.

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.

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