Wednesday was the 4 year anniversary of when I developed COVID. We in the Long COVID community sometimes call this our COVIDversary. Having never fully recovered, you could say I’ve been sick for 1,463 days now. That’s a lot. That’s also why I don’t post here much anymore. It’s not because I don’t have info to share, it’s because I always used to write posts in the evening after work, and I no longer have the energy to just chug along like an Energizer Bunny with poor boundaries, working non-stop because work is FUN! Something had to give, a LOT of somethings, and one of them was regular posts on this blog.
A little over a year ago I started making diary comics about my Long COVID experiences. I usually make these late at night laying in bed while I’m either trying to settle down to sleep or I’ve woken up and couldn’t get back to sleep. Here’s the one I made for my COVIDversary.
A few links — where my story started, someone else’s story who got sick about the same time as me, Ed Yong on what it feels like to actually listen to folk with Long COVID, and Eric Topol’s post highlighted in the comic. He does a really lovely job of staying on top of the Long COVID research and pulling out the highlights that seem to be most important.
Posting here only became more erratic and less frequent since I caught COVID in March 2020. I’m still tracking all the emerging tech stuff, I just can’t keep up with my job stuff (like research and publishing and supporting patrons), and blog, too. I’ve discovered that I was usually doing my blogging on personal time, and life with Long COVID means if I don’t do a better job of managing work-life boundaries, my body will do it for me.
So, speaking of #LongCOVID, today is 1,271 days, or … almost 182 weeks, or … almost 42 months, or … 3 years, 5 months and 23 days ago. It will be exactly three and a half years ago in one week. A lot of this journey has been captured here in this blog, either under the tag longcovid or in the Undiagnosed series from when it started before there were accessible tests. If you want to see how this all started and track the journey, here’s the first post in the series: Undiagnosed, Days 1-2.
Today, I just wanted to let you all know that there is an article in today’s print New York Times that includes a bit of my story. Usually, when I’ve been interviewed about LC I’ve posted the links on social media (here’s another one), but Twitter has locked me out of my main account and, last time I checked, the only way I can post this information to that account right now is to blog about it.
Since I am here, blogging, I’m going to also include just a little bit of info I felt was really important that didn’t make it into the article.
One of the aspects that most deeply concerns me is how many primary care clinicians are struggling to support their patients with Long COVID, often because they are already so overwhelmed with their normal workload, don’t have time to do a deep dive in the original research, and often are not aware of key resources designed to support them in this way. I particularly recommend clinicians be aware of the AHRQ supported Project ECHO programs from the US government: (1) Long COVID and Fatiguing Illness Recovery Program and (2) The Schmidt Initiative for Long COVID Global ECHO Webinar Series. Both of these two programs (housed at University of New Mexico Health Sciences) have regular webinars with leading researchers, and make the slides, resources, and recordings available to the public. The Project ECHO series covers specific LC subtypes, symptom clusters, treatments, interventions, cutting edge research, best practices, and more. Here’s a related YouTube playlist (#MedEdMonday: Long COVID & Post-Viral Syndrome) hosted by the Bateman Horne Center which includes many of the videos. These are all phenomenal resources. They allow patients to also attend, so register and ask questions. So many folk from our support groups take these resources to their docs, who say, “I’ve never heard of this. Thank you.”
There are changes coming for telemedicine and telehealth access in the USA after the end of the COVID emergency federal policies this week.
WARNING: I am still hearing from healthcare providers that some insurance plans are removing coverage for telemedicine visits after May 11. Specifically, I am hearing that Medicare is removing this coverage. Of course, it’s a bit more nuanced than that. It isn’t exactly Medicare, but is probably more some of the insurance companies through which people access their Medicare benefits may change how these benefits are accessed. While I am still encouraging people to confirm with their personal insurance plan, it seems that parts of this are a misunderstanding, so I want to make sure people are aware and thinking about this as they schedule new appointments. Please share this with people who might need this information.
High Points
1) Most of the telemedicine & telehealth provisions are being extended through December 2024, as long as the company meets federal requirements for providing these services.
2) Specifically discussed in the legislation as justifications for expanding telehealth are services provided for rural and veteran populations, as well as hospice. They are also making more permanent expansions of provider types to include physical therapists, occupational therapists and speech-language pathologists. Mental health was already included, but requires an in-person visit with your primary care doc before accessing. This may depend on your specific insurance plan.
3) They are tightening up requirements for prescription renewals, meaning that patients on certain medications must have an in-person visit to get their meds. They are also requiring in many if not most circumstances that the patient receiving telemedicine must already be an established patient of the provider or practice delivering the telehealth. So new patient visits must be in person.
4) The real thing driving the decision to remove access to telemedicine is that during the COVID emergency, the feds were subsidizing telemedicine visits AS IF they were in person visits, at full price. This will no longer be true, and reimbursement for telemedicine visits will return to prepandemic levels. The may mean that telemedicine visits will no longer be a cash cow, and providers or insurers may want to encourage patients to return to in-person specifically because reimbursements are higher.
5) The second thing that might create barriers to telehealth access is if the provider or clinic did not take action to meet the federal guidelines in time. They may find that they are no longer authorized to provide telehealth, or that they are required to do so in a different way. Like, maybe they’ll have to pay for a different, more secure televisit technology.
“To mitigate legal risk, further continuity of care, and avoid issues of patient abandonment, digital health companies relying on the PHE waivers should take steps now to bring operations into full compliance with applicable requirements before the PHE ends in May. The Biden Administration has also announced its intent to continue to execute the process of a smooth operational wind down of the flexibilities enabled by the PHE and the intent to provide continual updates as the PHE comes to a close. Thus, digital health companies should also closely monitor further changes, or adjustments to expiring flexibilities that may be announced in the coming months.” Foley & Lardner LLP, Feb. 7, 2023
For more information, please contact your insurance provider and your healthcare provider prior to scheduling telehealth visits to verify if these services are still being offered and what financial costs you are likely to incur. Also, see the sources listed below.
Since this went live, a number of folk have generously clarified some issues and shared new resources. Much of this connects to local access here in the Ann Arbor area, however other locales may have similar issues, so it’s worth mentioning just in case. My thanks especially to Judy Smith and Kara Gavin.
One of the confusions that came out in conversation related to physical therapy and some other related allied health care options. According to the sources for the original version of this post, it looked as if support for these had been extended for at least another year, however here locally, it turns out to be more nuanced. Here, let’s start with what Harvard had to say for their folk.
“Medicare will also extend payment for telehealth visits with occupational therapists, physical therapists, speech-language pathologists, and audiologists. Private insurance companies are expected to follow Medicare’s lead and continue paying for telehealth visits during this extension period.”
However, this is what the University of Michigan posted on the same topic.
In particular, Medicare will no longer cover video visits for U-M Health appointments with the following types of providers: Physical therapists Occupational therapists Speech language pathologists Audiologists
Why the difference? It all depends on how they are billed. In town here, sticking with physical therapy as an example, you can get PT through the UofM health system or from private providers elsewhere around town. If you go through UofM, it doesn’t matter how large or small the clinic is where you go, it counts as being provided through the hospital because it is billed through the same system as hospital-based PT. If you go anywhere else, for a non-UofM provider, telehealth is still covered. Isn’t that just … interesting? And irritating, and awkward, and confusing, etc. That would be why some folk on Medicare (or with insurance through a company that models coverage on Medicare) would suddenly find they no longer have coverage for telehealth. Oh. So phone your insurance company to check.
Meanwhile, this is a moving target, and the information keeps changing. Since this was posted two days ago (May 8, 2023, with this update being May 10, 2023) the following two links have been released.
Note that so far I’ve only talked about federal regulations, but this tool includes states, which raises the complication of when the state laws are different than the federal or add details to the federal requirements, what does that look like? So, again, call your insurance company, and if possible get whatever they tell you in writing.
Back when Wordle first got going, I started collecting Wordle clones and variants. I use these therapeutically to help treat the cognitive portions of my Long COVID symptoms. They are helpful in retraining the brain with word and concept recognition and retrieval. When I first started with Wordle, each time it took a long time to find an answer. At the beginning, I’d often end up getting frustrated and using one of the Wordle cheat find a solution tools. I figured with as much trouble as I was having with word finding, even using the cheat after struggling was still helping my brain to forge those connections again. It got better over time, and now, I can usually solve a Wordle in a minute without the cheat tools.
That’s for the original Wordle, though. So, while I’ve continued with the original Wordle, and basic word finding and retrieval has improved, there are other cognitive areas where I’m still struggling, things I used to know well. For example, I used to be fluent in French, dreaming in French and writing sonnets in French. During COVID I realized I’d lost my French. There are a handful of words I can use, and maybe a couple hundred I can read, but I’m having to look things up. So I started using French versions of Wordle to rebuild that part of my brain. You see? You get it?
I’m using a half dozen or a dozen Wordle variants on specific topics to help build retrieval in a targeted fashion for concepts I want to focus on. It also provides more challenge, because the original Wordle has gotten to be fairly easy for me. For myself, I have a few I try to do each day (if I remember), and several that I rotate between, usually trying on the weekend to get in a few more. The ones I’m doing almost every day include original Wordle, Canuckle (Canadian-themed), Worldle (geography recognition by shape). Ones I do often, every week, include Foodle and Phoodle, Le Mot (a French language Wordle variant), Numberle (math-themed), Wordosis (medical terms). There are several that I’ve done often at times and less often at other times, but still usually do at least once a month. These include Chordle (musical chords), Dordle, Quordle, Octordle, Squardle. Others I attempt erratically either because they are so like something else I already do (like Lingle, which is basically the same as Wordle), and ones that are so hard for me I find I hard to make myself do them, like Semantle, Semantle Junior and Waffle. I will say, I have tried really, really hard with Semantle, but my brain just doesn’t work that way.
There are more. Of course there are, LOADS more! I’m sure there are new ones since I built my collection, but feel free to suggest ones I’m missed in the comments. In the meantime, here are >200 more, sorted by category and topic. For today, don’t break the picket line, break your Wordle streak and break your brain.
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).
— Diana (Berrent) Güthe (legacy blue checked) (@dianaberrent) September 9, 2022
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 periodresearcherslike 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.
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.”
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.
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.
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.
See also these other open discovery tools for components to include in courses:
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.
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.
The Syllabus (website) [NOTE: This doesn’t seem to actually be a syllabus, but how could I not mention it? Easily. Why not? Well, it’s not open — it costs $$ to access virtually anything of interest on the site, which is contrary to the whole theme of this series. While you’re debating about paying money, try following their Twitter and Instagram for seductive hints of intellectual caliber. Not a syllabus, but interesting.]
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.)
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.)
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.
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.
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 …”
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.
The cover of Lynda Barry’s book, “Syllabus”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)
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.
Syllabus tip: make your syllabus as google doc, rather than word or pdf. This way any changes you need to make throughout the semester are auto-updated for students and you don't have to worry about anyone using an outdated version. Thanks @LauraKrull4 for the tip!@OpenAcademics
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.
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
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.
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 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!
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)
![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](https://etechlib.files.wordpress.com/2022/08/lccmxfineaslongasimsitting.jpg)
Emerging Technologies Librarian 
