Here we go again, my now monthly update on life with Long COVID. Things are much better, but still complicated. Last month I mentioned that I have a neurologist now among my specialists, and that he’s made some suggestions that really helped. The most obviously impactful suggestions are increasing electrolytes, wearing an abdominal binder (not pretty, but hey, I’ll take it), and increasing my mast cell inhibitor meds (which has drastically improved the quality of my sleep, also helps with brain fog, among reducing other symptoms).
A month ago I had been able to increase my walking. I was up from walking around the block I live on once a week to twice a week. (Before that there were several months where I had been unable to walk around the block.) I tried every other day, but at that time this was still too much. I am now up to being able to walk around the block two days in a row, but I still have to rest the third day. This is simultaneously exhilarating and disheartening.
What happens on that third day if I try to do the walk? Well, the first day, walking around the block is just lovely. It’s amazing how, when you haven’t been able to, getting to the other side of the block can look like you’re on vacation. Here’s neighbors, flowering bushes, birds are singing, all these things I’ve missed for so long without necessarily realizing I missed them. The second day feels empowering. Look at me, it feels just the same, sauntering along, I can do this, I’m back to normal, soon I’ll be able to do everything. Right. The third day feels just the same as the second for the first hundred yards or so. Then the fog starts to kick in, I’ll start to have some balance issues, wobbling just a bit. After another hundred yards I’m aware I really need a rest. Luckily my block has a place to rest there. Halfway done, now to get back home. I lurch back to my feet, and the rest of the walk will be staggering as if I’m drunk, balance just gone, struggling to keep my head up and my eyes open, arms stretched out to improve proprioception, trying not to accidentally run into people or walls. So, I’ll try two days on and one day off for another couple weeks, and then three days, and keep nibbling away at it.
I am improving with ADLs (activities of daily living). I can make my own meals most of the time. I can do my own laundry. I can help with dishes sometimes. I am FINALLY able to do a little bit of housecleaning sometimes. Let me tell you, after a year of being largely bedridden outside of work hours, the house is pretty terrifying. I mean, REALLY terrifying. I honestly didn’t see how bad it was until the brain fog lifted more consistently, and I hadn’t realized how bad and constant the brain fog was until it started to go away.
Brain fog ebbing gives me more spoons for cognitive work. This means, yes, I’m able to do a higher level of work, more creative work, but it also means that I am able to do things like remember I made a promise to someone and followup on it, able to plan my time to reserve energy for specific things, better able to predict my crashes, and better able to notice my body’s warning signs of needing rest. It also means that I am more prone to thinking I can do all the things I used to do, and find myself locked in hyperfocus working too many hours trying to just finish that one last thing. I’m finding that I need to take a fairly significant break midday and step away from work to do something completely different. Unfortunately for my body (and fortunately for almost everything else), part of doing a job is being part of a community of people engaged in related and interwoven activities toward common goals, and when my body announces it would like a break, thank you very much, this doesn’t always align with everyone else’s schedules. When I push through to accommodate large group meetings or meetings that had been really challenging to get scheduled, I find those days I’m back to spending the evening flat and foggy.
The other important thing for me that is connected to a reduction in brain fog is my ability to read is coming back. I can now read research articles and make sense of them. I can read challenging books on serious topics if I break them up into small bits and stretch it out. I’m still reading mostly light fluffy fiction, but I’m able to read more at a time, read longer, read faster, and even if I’m not yet able to read my usual materials on a regular basis, I count it a win that I’m able to read them at all. I’m counting on my mental muscles stretching just like my energy envelope is growing.
The toughest part of improved and more consistent cognitive function is that I realize better just how bad I have been, and how far I have to go. This is scary and sad. I didn’t feel as scared about it before, I think because I simply lacked the energy to project into the future likely impacts or realistic outcomes if my symptoms persisted. I’ve been kind of Pollyanna-ish about all of this. Not a bad approach, and it’s paying off, but I’m having more days where it’s all rather overwhelming.
There are some other things that have improved as well! I’m not as cold all the time (although my temp was 95.8 earlier today). I still cover up with blankets most days, but not ALL day. I wear layers of winter hats, but less often. People who haven’t seen my hair in four or five months are surprised by my haircut, which happened in December, but I’ve been wearing layers of hats all the time for months. My hands still tremble, but it’s minor and less frequent, and I can work through it, often without really noticing (my son is the one who notices). My ability to taste and smell is much better. Instead of about 5% with erratic blips of partial or full flavor, I’m at more about 70%. I can taste and smell pretty much everything at a less sensitive level than I used to. I can actually sing more often than not, and my voice doesn’t often make the machine gun noises it used to always do when I tried. My vocal range had decreased from 3.5 octaves to 0.5 octaves, and is now up to about 1.5 octaves. This is enough to sing in choir again. Many people with Long COVID have had hair fall out by the handfuls, while I just had a lot of hair turn gray or white. I already had a gray streak in front, which turned bone white at the peak of the illness, and a lot of the hair around it turned gray, hair on the sides and back of my head as well. Well, now, some of my hair color is coming back, and the patches of gray are shrinking and the white is going back to gray. I don’t expect to have it all come back, but this is heartening and tells me I am genuinely getting better.
The main thing nagging at my brain after my previous post about COVID vaccines (“Looking at … COVID Vaccine Black Markets & the Role of Tech“) has been the idea that some of the sites for finding vaccines are phishing sites that harvest personal information for identity theft. I had thought that mentioning this in the original post, and including a link to the CDC’s Vaccine Finder website would be sufficient for me to mention. I’ve gotten some feedback to the effect that, no, people simply do not want to believe that this is an issue, and no we don’t need to talk about it. As a librarian, a big part of what we do (and what I do) day in and day out is related to assessing quality of information, and helping folk learn how to do this better themselves. This makes a great example to walk through some of that process. What I hope to do in the rest of this post is break this out in three parts: 1) more explicitly break out why you should be careful on COVID vaccine finder sites; 2) give an example of assessing the safety of a site; and 3) point to just a few examples of good sites for finding COVID vaccine information and appointments.
Are COVID Vaccine Sites Risky?
For me, I’ve seen enough online misinformation that I just tend to err on the side of assuming sites I don’t already know and trust can’t be trusted until proven safe. That’s kind of my general approach to looking for information online. For myself and my family, we get vaccines, and there is a big difference between being worried about COVID vaccines themselves and being worried about the websites where people go to find appointments for their vaccines. While I want other people to also get vaccines, I don’t want people to have anything bad happen while they are trying to get their vaccine. Here are some of the warning messages about the potential risks of COVID vaccine sites that made me think I wanted to be careful while making my appointment.
This doesn’t apply just to COVID Vaccine information and appointment sites, but are basic skills to apply to anything you look at online or offline. As Mark Twain so famously said, “Be careful about reading health books. You may die of a misprint.” There are dozens of tools to help people remember how to assess information quality. One of the most famous and popular (and memorable) ones is CRAAP (2010), from Sarah Blakeslee and friends at CSU-Chico.
You might get the idea that librarians have been working on this a long time. I certainly wasn’t the first, and learned a lot about assessing information quality from tools developed for print materials before the Internet even existed.
So let’s take a look at a vaccine finding site with these ideas and principles in mind. This is not a tutorial applying either of these tools (many of those exist), because this is going to be even shorter. This is where I start these days when I’m trying to decide if I trust a website: Who, Why, What, Where, When, How. Those probably look familiar, since many of us learned this set of questions in a school lesson on journalism or storytelling, and a good website should do a good job about telling their own story. But usually I can weed a site out or decide I’m suspicious about them with just the first three.
WHO made the site, and is it easy to figure out.
WHY did they make the site, and are they up front and honest about their goals.
WHAT does the site actually provide, is it provided legally, is it what I want, and is it provided in the way I want it.
The COVID Vaccine finding tool that I’ve been recommending the most is the one from the CDC (Centers for Disease Control and Prevention): VaccineFinder.org. A screenshot of the top of their main page is at the head of this blogpost.
If you scroll down from the main page for Vaccine Finder they do a wonderful job of answering my most important questions. Who are they? They are epidemiologists and software developers from Boston Children’s Hospital working in collaboration with and funded by the CDC. They also partner with “clinics, pharmacies, and health departments to provide accurate and up-to-date information about vaccination services.” Then they have a “Contact Us” button so you can ask more questions, as well as listing other partners such as Harvard and Castlight Health on a logo banner. Given that this is funded and sponsored by our government, and developed and designed by a collaboration of reputable organizations, I would trust this site, as long as it actually does what it says it does, which it does.
What Vaccine Finder shows me when I search for vaccine appointments in my area is a list of all the places that are providing vaccines to the public and whether or not they currently have vaccine in stock. Note that bit about available to the public, because I actually received my vaccine through the clinics for my insurance, and they are not listed because they aren’t open to the public, only to people with that insurance. The site did list 50 different locations from several different pharmacy and grocery chains as well as small businesses with only a single location. The large map for the state appeared on the main page, but after I searched for a specific zipcode it switched to a more detailed map. Note that Vaccine Finder doesn’t require that you be at the location you want, so you could search for vaccines in a different state, perhaps where a friend or loved one lives. It allowed me to customize based on which vaccines I was interested in. It also allowed me to specify how far I want to drive. To make the appointment, I would have to click through to the location’s web site or phone to make an appointment. The Vaccine Finder site does not make the appointment for you. Vaccine Finder does not have an app for mobile devices, but instead designed a site that is mobile friendly and can be used on any kind of smartphone or tablet.
Let’s compare that with another site that is really popular among my friends and relatives, Find-a-Shot.
Find-a-Shot automatically figures out where you are, and pushes you to the webpage on their site that matches your location. For some people, that makes things easier, for others it makes them worry about privacy issues. It allows you to search for location by zipcode or state as well as it identifying your location. Find-Shot mentioned on their page that some vaccine providers have blocked them from retrieving information about vaccine availability, and that they are negotiating with those companies to try to restore access to the information. They list six pharmacy and grocery chains they are working with for information (CVS, Kroger, Meijer, Rite Aid, Walgreens, Walmart), but no matter what I did in the site I was only able to retrieve vaccine location information from Rite-Aid, unless I clicked directly on the green dots on the map. The map is identical to the one from the Vaccine Finder website, but did not appear to allow the more precise map for a specific location, at least not easily. It didn’t say whether or not they have vaccine available, but whether they have appointments available, and again pushes you to the provider website for scheduling. Find-a-Shot does come right out and say they don’t keep any information on people who use the site, which is a comfort.
“Findashot.org collects no personal information about users of this site. We use Google Analytics to understand aggregate traffic patterns. Your location is only used with your permission to search for locations close to you and to show the distance to listed locations.”
So, there are some significant functional and interface differences between the two sites, but can I answer my two main questions for Find-a-Shot, what and why? Sort of. Find-a-Shot is a crowdsourced site run by volunteers, which means that officially the information comes from people all over, rather than a specific team or organization or individual. That said, it does ask you to buy a coffee for the person behind the coding for the site, who is not named but evidently was in Texas at the time. They have a banner of logos, but instead of the logos showing their organizational partners, it shows news sources that have mentioned them in an article. If you read the articles, some of them mention the person behind the site. They do list Find-a-Shot’s partners in text: GetMyVaccine.org and VaccineSpotter.org. GetMyVaccine is another crowdsourced list of vaccine appointment locations from major pharmacy and grocery chains in different states. It does not provide any information about the people behind it, but if you dig deep enough you can find a tutorial video from Erick Katzenstein. I haven’t watched the video, but it looks like he is probably the person behind the website. Vaccine Spotter doesn’t appear to be crowdsourced, instead listing the companies from which it scrapes the information. Vaccine Spotter does something else nice — they’ve put the code for the site in GitHub and made the project open source. And while they don’t say who they are on the site, they do list a personal Twitter address for Nick Muerdter, which means its a little easier to find a person. So, for all three sites associated with Find-a-Shot, they give the impression of being well intentioned folk, but it is a lot more work to make that decision. I would still say this is a site that is okay to use, it’s just a lot harder to answer those little questions like who is doing this and why are they doing it.
I didn’t go looking for a vaccine finder site that is overtly bad. You know why? Because I’m on a work computer, and I don’t want to risk going to a site that isn’t trustworthy. Some of them do the phishing by asking you to fill in a form or answer questions, but some of them could possibly gather information from your computer without you having to know it’s happening. After all, that’s how Amazon and Facebook know so much about you, and they are (mostly) trying to use their powers for at least hypothetical good (and likely to be at least mostly responsible because they want to keep the government out of their business).
Tips and Resources
You already know my favorite place to start — Vaccine Finder. But there is no one-size fits all website for this.
It’s a lot of work to find a vaccine appointment slot. It’s getting better, but oh, it’s been so awful, and some of the websites are so painful to use. The first time I tried to make a vaccine appointment, I wanted to cry, and I gave up, and waited weeks to a month before trying again. Of course you want to find an easier way to do it, and that’s why all these sites are popping up trying to solve these problems. And that is also what makes this such a wonderful opportunity for the unethical folk. Most of the sites that are doing this are genuinely trying to help people, but not all of them are from nice folk. How did I decide where it was safe for me to make my appointment? This is where we get back to CRAAP and CHAIN-of-TRUST. This is why I ask WHO as the first question when I am looking at a site that is giving or taking my information or money.
Clinic or health system
Public health department
If a website is from the federal government, I hope they are going to do the right thing. Again, this can be (and often is) debated, but for today, let’s just assume that it is in the best interest of the government to make it as easy as possible for people to get vaccinated so we can get the pandemic more under control. Even if you don’t trust the government perfectly, it’s fair to assume that there is nothing they are likely to find out from you scheduling a vaccine appointment that they don’t already know about you. (In case you haven’t guessed, I’ve been talking with people who are REALLY concerned about some of these issues.)
Next, if you are lucky enough to have insurance or belong to a health system, these are likely to have their own system set up for getting a vaccine, and it is going to be more private than most of those pop-up home grown web sites to help people find their vaccine. It might not be as easy to use, though. State and country health departments are another place to check, and the CDC has a list of them all for the USA, if you aren’t sure how to find yours.
Knowing the sites to trust isn’t enough, though, if they are too hard to figure out. There are a number of places with people volunteering to help other folk walk through the vaccine process. Local churches and non-profits are not bad places to start, or community organizations, especially if you already have a relationship with them. There are people using the appearance of being a volunteer to do other kinds of scams, so you really want to start with someone you already know and trust, if at all possible. Try asking at the local public library reference desk, if that’s an option. There are some vaccine volunteer organizations that are being recommended by trustworthy organization, if you need help and can’t find it any other way. Here are a couple links for more information, just in case.
This month actually still looks a lot like last month, still very much good days and bad days, although some significant things have happened. The good days are better, and the bad days aren’t as bad as they once were. I have a new specialist, a neurologist. They say, oh, yeah, I DEFINITELY have dysautonomia! They added POTS. This gives me what has been appearing as an unholy trinity of diagnoses that have been cropping up among many of my friends and social media acquaintances: joint hypermobility (like EDS); mast cell issues (autoimmune and MCAS especially); and POTS (or other forms of dysautonomia). Yay, I joined the club? Or not so yay.
The neurologist had a list of things people can try to feel better, and which patients sometimes discover on their own. I was doing most of them already (examples: salt loading, increased fluids, sleeping with a raised head of the bed, taking breaks where I elevate my legs, neuro rehab, compression stockings, and more). It seemed to surprise them that I was already doing so many. Since I wasn’t doing everything, we’re adding the rest and doubling down on interventions which are low cost, low risk, and offer a big bang for the buck. Compression stockings are shifting from knee high to thigh high. Adding an abdominal binder, which you can think of as a medicalized corset. Even more salt (a LOT of salt!). And fluids. Specifically electrolytes. I’m up from a half gallon a day to a gallon, at least half of which is oral rehydration fluids (like Pedialyte, although I’m using TriOral). It’s amazing. It has really cleared out a lot of the brain fog. I have a fair amount of experience powering through brain fog because of having celiac, and I’m also pretty good at ‘faking’ feeling okay when I’m not. The idea that the tunnel vision feeling I have been living with will just vanish if I drink a pint of electrolytes? MAGICAL!
An example good day: With the brain fog cleared out, I could successfully do many of the things I’ve been struggling with. I could also better manage actually taking breaks appropriately instead of slipping into brain fog and hyper focus. I’m also getting better at recognizing when the brain fog is starting, and taking action to head it off, like electrolytes and raising my legs. Last Saturday was the best day I’ve had since before the pandemic started. I have for many years tried to follow the National Poetry Writing Month practice of writing a poem a day during April. Last year didn’t go so well, but trying again this year. Here’s an excerpt from the happy sonnet I wrote for last Saturday in my poetry blog.
“A day almost like beforetime, when I could walk if I wanted and still breathe, twirl as if music is lilting or play twister and not fall. The luxury of an airway uncluttered, muscles not withered, and hey…”
There are still bad days, too, and they seem to be triggered by a combination of things. We know that maintaining personal hygiene still seems to trigger crashes. Doing too much does also. Not taking breaks. Etc. Last week the inaugural COSMO conference happened, and I was on the planning team, so, yeah, I did too much and didn’t rest enough. I also had lab tests for the neurologist and to test whether the vaccines actually triggered antibody production, since having COVID didn’t. Crashes for me come in waves — there are immediate crashes during activity, delayed crashes at 18-24 hours after activity, and even more delayed crashes at 3 days out. I read about someone who has crashes at 5 days after their triggering activity, and that must be really hard to manage. So the trip to the blood draw and the extra COSMO activity were 2 and 3 days before the now weekly shampoo, and these three combined to ill effect. The good news is that boosting electrolytes helped reduce the impacts of that crash. Here’s my Facebook post from Sunday describing how that day worked.
Today I read PARENTHESIS by Élodie Durand. It was very strange to read. I don’t have brain cancer, but her description of her life feels so much like mine in some ways.
Yesterday was a good day. Probably the best day I’d had since before COVID19. Today was not a good day. The worst crash I’ve had in a couple months.
I felt fine when I awoke. Started a load of laundry. Took my meds and the first quart of electrolytes. By 9:30am the chills had started, but I hadn’t eaten yet, so kiddo helped me make a bowl of cereal, and I made myself eat it before I lay down.
By 10:30am I was back in bed, covered with the weighted blanket and a few more. By 11am I’d passed out. When I woke at noon I couldn’t talk or lift my arms. I tried, but I didn’t make sense. I couldn’t remember the words I needed. I couldn’t construct a sentence. I couldn’t ask for the help I needed. I would say the same word over and over, frustrated that kiddo couldn’t figure out what I needed. Later, when I could talk again, we agreed that the next time this happens he should record it to we can show the doctors.
A few weeks ago I started to see a new specialist for the post-COVID dysautonomia, a neurologist who has other #LongCovid patients and who specializes in autonomic disorders. He has added POTS to my diagnostic collection. He was surprised & pleased how many of the things they recommend I was already doing. So he bumped things up.
Some of the things he added: 8 grams of salt a day (that’s a lot!). A gallon of fluids, half electrolytes, half water. In a few weeks I have an appointment to fit an abdominal binder, which is kind of a medical corset, and thigh high compression stockings. He says these will all help with suspected pooling of blood in the gut and legs. He said the reason for the brain fog is that blood is actually not getting to the brain.
I’ve been finding the electrolytes are having an amazing impact. Drink a quart, and the weakness just fades, the brain snaps into focus, I feel more like myself. So today, when everything went away, I tried to get kiddo to bring me electrolytes.
Usually I just bottoms-up and guzzle a whole quart. Today I couldn’t lift the bottle. He had to get a small cup, pour some into it, help me with it. After the first cup, I could handle the second cup, with both hands. After the second cup, I could pour my own, and could finish the bottle.
So, that was noon. It was a couple hours before I could sit up without help, or stand up to go to the bathroom (because QUARTS of fluids!). I couldn’t read a book because I couldn’t hold it open.
I finished two quarts (yes, that’s an extra, but I seemed to need it today). And, voilà, I’m back! I could make a simple lunch. I can’t stand long, but I can get up and do short activities. Yesterday I did three loads of laundry, a load of dishes, and walked around the block and felt okay. Today, nah. Let’s not.
But I did get to where I could hold a book again. We use TV dinner trays to hold the pedialyte bottle, a cup, the book. I can prop the book up so it isn’t as tiring to hold. It was an amazing book. A bit gutting to have so much of it resonate so tightly.
And tomorrow, I’ll feel fine. How much you want to wager? Well, fine-ish. Enough to sit at a computer and people will think I look normal.
Last week Twitter was blowing up over a new UK evidence review (using systematic review methods) on the topic of puberty blocking or delaying treatments for children and youth who identify as transgender. The largest pushback I witnessed was being directed not at the authors of the evidence review (link will force a PDF download), but the authors of the BBC news report that described the findings.
Now, the BBC news report did a fairly good job of reporting a synopsis of what the NICE review found. Minus one critical piece of context, which I would like to fill in here for people. I am speaking here as someone who previously has had a not insignificant side-gig as a consultant on systematic review methodologies. At the time, there weren’t so many of us medical librarians who were doing this, and now there are a LOT. And most of them will tell you what I’m about to say.
THE FIRST REVIEW ON A NEW QUESTION USUALLY FINDS INSUFFICIENT EVIDENCE. THIS IS NORMAL. I repeat, this is NORMAL!!
This is how it is supposed to work. Someone asks a question, and frankly, someone has to be the first. It starts somewhere. That first review finds insufficient evidence specifically because it is a new question or topic. Often researchers exploring emerging topics haven’t yet agreed on how to study it, how to define the methods and limitations, what are the standards, how to report data, how to define the study population, and so forth and so on. The first review is the first step toward doing this. The first review looks for emerging patterns and trends, picks out those that look most important and most likely to lead to consensus later, and then makes recommendations for future research in this area to use. This is the first really major step toward agreeing on those definitions, standards, measures, methods, etc.
Now comes the hard part. You have to wait FIVE WHOLE YEARS. During that time, people who care passionately will do new research, BETTER research, research that is reported better and meets the new emerging standards and guidelines. After five years, or ten years, now you can redo the study. If the new research on the topic is well done, it will either point to a new finding, or will confirm the original finding. Either way, you will know more. Sometimes it takes 10 years to achieve enough of an evidence base to show that something works. If there is not enough research funding for the topic, it may take longer.
My point is that this is not the end of the question, this is the BEGINNING. It will take a lot of money to fund more research to really answer this question. If people don’t understand how systematic review methods typically work, then politics can kill off the funding, and we will never really know the answer. With a topic as politicized and sensitive as this one, there are chances that policymakers may misread or misinterpret the significance of the findings in this report. That makes it really important to make this very clear.
The only thing this study tells us is that we don’t know the answer YET, according the the criteria specified in this report. If you want to actually know the answer, it is critical to not make a definitive decision, and to keep studying this for a while longer, and in a humane way. It might also be good to look at other reports on this from other authors, and which define the question differently. Consider the role of bias in each. I find it interesting that the similar US report had opposite findings, and am asking myself about the role of cultural context in defining how the questions were approached.
I’ve been watching stories in recent months about COVID vaccines for obvious reasons. When I first saw discussion around the idea that vaccines would become available through the black market, my initial reaction was to roll my eyes, think, “Duh!”, and close the tab. As various aspects of technology came into play, this became more interesting: the tech involved in managing the vaccines, in diverting them, in making black market vaccines or ‘alternatives’ discoverable, and in protecting or preserving official chains of access.
First, there are significant tech constraints on vaccine provision that make it challenging to divert actual vaccines into alternative non-authorized channels. The freezers required to transport or store the vaccines are a huge barrier for most, as is the need for rapid delivery of the vaccine once unpacked. The logistics are nightmarish and require tight controls. Personally, I find it hard to believe an unauthorized supply chain could do this successfully on a dependable basis. Chances are that vaccines through these channels would be either fake, fraudulent, adulterated, damaged, or otherwise unlikely to work, so why take the risk?
The earliest concerns expressed were about fake or fraudulent vaccines (and PPE, of course), especially since the FDA sees this happening with many major health topics, and it has been big with earlier COVID ‘treatments’ and prevention strategies. Operation Quack Hack started in May 2020, and by June had identified “more than 700 fraudulent and unproven medical products related to COVID-19.” I’m not sure I want to know how many they’ve found now, almost a year later! The FDA collaborated with domain registrars to persuade online retailers to remove questionable products, as well as to take down related websites. More recently (February 3, 2021) the FDA released resources encouraging the public to be wary of fake vaccines in addition to the fraudulent tests and treatments.
Possibly a more serious risk comes from diversion of actual COVID vaccines, which takes a lot of different forms. The simplest is people who fudge their replies, stretch the truth, or outright lie on their vaccine eligibility survey in order to skip place in line. According to the Advisory, these happen mostly through inflating personal health risks, people or social systems claiming certain individuals are groups qualify as essential workers, using advantages not available to all, or outright cheating. The more worrisome version is when healthcare providers are involved. More on that in a few paragraphs.
It would be one thing if these were the only thing we had to worry about. In mid-November 2020, Transparency International released Vaccinating Against Corruption, opening a public conversation around logistical and ethical challenges with vaccine distribution, as well as a range of policy, oversight, and tech options for addressing these.
“National allocation frameworks must be developed transparently and collaboratively to ensure that distribution is equitable, and access to vaccines doesn’t become a weapon to discriminate against vulnerable groups. We are also looking at how we can work with governments and those distributing vaccines to ensure that supply chains have corruption safeguards in place, and to ensure that systems are in place to actively monitor the implementation of the framework and vaccine rollout. These could range from the technologically complex, using RFID tracking on vaccines, through to awareness campaigns on reporting attempted corruption, and community-led distribution monitoring.”
Cushing, Jonathan. Vaccinating Against Corruption. Transparency International. November 13, 2020.
At the same time, China was already in the throes of coping with black market distribution of COVID vaccines, with scalpers charging hundreds of dollars for a single injection (which may or may not be effective), and people diverting actual vaccines by claiming professional need to travel. In weeks following this announcement there were increasing media reports and interviews around how the rich, privileged, and powerful are not only able to manipulate the system to their benefit, but that the system is constructed to make it easy for them to do so.
“The U.S. health care system is generally designed to give preferential treatment to those with wealth and connections, ethicists said. “When we talk about the concept of individuals being able to get to the front of the line, that’s not difficult, because our system is designed to advantage those people with means like that,” said Tuskegee’s Ellis. “They don’t have to really do anything sinister. All they have to do is access the system that they are a part of.””
It isn’t as simple as it sounds, though. When we talk about high profile individuals receiving early and preferential access to medical treatment like the COVID vaccine, that could be a good thing or a bad thing. Are they cheating the system? Are they demanding access other folk don’t get? Are they setting a good example and modeling behavior we want adopted by the general public? Are they in a position where many others depend on their health and well-being for their own survival or success? For example, I would want to insist that the President of the country be vaccinated as soon as possible, but if it was a wealthy but not-particularly-famous person in good health and of moderate age who just happened to pay for concierge care, well, that’s more ethically questionable. It’s not a clearcut good or bad, but depends on the context.
As vaccine availability and access shifted closed to the general public, the issues became more prominent. Concerns were expressed about vaccine diversion by those in the production and distribution pipeline, from factory to clinic. More news became available about challenges, scams, and scalpers in China, and those issues moved from China outward to the rest of the globe. The underground or black market around this expanded, and those nefarious elements targeting the COVID vaccine access pipeline touched on every aspect, from individual providers to the ultra-cold storage trucks and shipping, with hackers involved in diverting shipping, tracking shipments, or threatening those responsible for managing the shipping processes. Some thrilling reporting was starting to come out. I’d like to highlight just a few pieces for your attention.
StatNews had an article detailing mechanisms that were or could be used for abuse of vaccine access, with key concerns focusing on the point of delivery as most vulnerable. They interviewed a variety of experts who described ways to combat this, ranging from sophisticated technologies like artificial intelligence and radio tracking to social controls like public shaming.
“But bioethicists believe pharmacies, urgent care clinics, and doctors’ offices are among the most vulnerable points along the distribution chain. The state-line divides within the health care system make it especially vulnerable to abuse. “There’s far less scrutiny of state legislative and regulatory bodies than at the federal level,” said Potter. “The fragmentation makes gaming the system easier and more likely.””
Coming from China’s Global Times was a vivid report of the range and variety of less-than-legal approaches utilized in selling and acquiring vaccines. The most shocking to me was the idea of giving both vaccine shots at the same time, because, [sarcasm]sure, that’ll work just fine, won’t it?[/sarcasm] They also described scalpers claiming to work for the vaccine production companies; heavy use of social media to target naive victims; falsifying identity or employment to fast track people onto schedules for legitimate vaccines; using attempts to acquire illegal vaccines for identity theft information harvesting; the dark web; counterfeit vaccines that look exactly like the real thing, counterfeit vaccines shipped to other countries, and hospitals in those countries sometimes being duped into purchasing and delivering fake vaccines. As soon as hospitals found out this was possible, security around acquiring vaccines ramped up even higher, and in the USA vaccines are being delivered through government channels in part to avoid getting bad vaccines mixed with good ones.
“”I can secure you a dose of Sinopharm with a very competitive price of 3,000 yuan ($458) for two doses, getting injected in a first-class public hospital in Beijing. Many like you have approached me asking for quick accessibility, and no one reported any serious adverse reaction so far,” Xiao said when peddling COVID-19 vaccines via WeChat to a Global Times reporter who pretended to be a student going abroad and desperate for vaccine.”
NPR went into more detail about the dark web in their interview with Chad Anderson, from cyber-security firm DomainTools. In addition to issues and problems already described, Anderson described illegal marketplaces, cryptocurrencies, escrow for your illegal drug/vaccine purchases, hackers targeting hospital patient data as well as cold storage shipping required for the vaccines.
“”ANDERSON: Dark Market (ph) is the largest one, and it’s the first market run entirely by women.
VANEK SMITH: I have very mixed feelings about that. I’m like, part of – my brain is like, that’s great, go women. And part of me is, like, very conflicted, very conflicted about that.
ANDERSON: Yeah. Well, they don’t allow fentanyl. They don’t allow explosives or human trafficking.”
“VANEK SMITH: Back in October, one hospital in New Jersey paid cybercriminals more than $650,000 after the criminals locked up their computer systems and threatened to publish all of their patient records.
GARCIA: But it’s not just hospitals that criminals are targeting. Remember – the Pfizer vaccine needs to be kept really cold, and not many companies specialize in that kind of ultracold transport, and most of them probably don’t have super advanced security systems. So now cybercriminals are seeing a major opportunity targeting those cold storage companies.”
I was really impressed with the Los Angeles County Department of Public Health, who have produced a brilliant set of resources for the general public about how to identify these COVID-related scams, including a vaccine-specific resource. They warn people how to tell if a contact tracer is legitimate, that government-authorized COVID activities are never tied to Social Security payments, how to protect yourself against health insurance fraud tied to COVID tests or vaccines, identity theft, fake charities, fake helpers offering to deliver groceries or medicines, stimulus check scams, miracle cures, dangerous products like some hand sanitizers, and so much more.
“A RED FLAG is a warning sign or signal that something might be a scam. Look out for these COVID-19 vaccine red flags: Someone offers to move you into an earlier group to get the vaccine for a fee. Someone tries to sell you a place on a COVID vaccine waiting list. There is no “vaccine waiting list”. Someone on the street, online, on social media, or knocking on your door tries to sell you a shot of vaccine.”
Things started moving closer to home (as in the USA). Following on the heels of COVID vaccine fraud in China came stories of Chinese nationals in other countries covertly receiving vaccines approved for use in China, but not in the country where they reside. “Vaccine diplomacy” has become a buzzword that is overwhelming the news media — just try searching it in Google to get a sense of the global scope of the competition among nations to become a leader in controlling access to COVID vaccines.
“The message in late December wasn’t meant for Jesse, a newcomer working at an offshore gambling operator in the Philippines. But her eyes fell on a group chat on her colleague’s unattended phone, detailing plans to administer coronavirus vaccines this month to her Chinese co-workers. Her colleague had sent their peers a reminder “to make sure when they get vaccinated, they have to wear long sleeves . . . to cover the cotton after the injection,” said Jesse, a Filipino who chose to go by her nickname for fear of reprisal. “And you’re not supposed to say anything to other employees.” No coronavirus vaccine has been approved for general use in the Philippines, nor is one expected to arrive, officially, until at least February.”
“According to the police report, 31-year-old Joshua Colon stole three doses’ worth of the Moderna vaccine, then forged the vaccine screening and consent forms. Colon reportedly told detectives he was directed to do so by his supervisor, a captain with the fire department who Grady said will likely be arrested upon his return home from vacation.” “Colon told detectives that on the day of the incident, his supervisor joked with him about getting some vaccines vaccines for his mother. He said he was told by his supervisor to report the vaccines as being no good. Colon told detectives he refused to provide those vaccines to his supervisor, at which time his supervisor threatened he would tell a higher up in the chain of command that Colon was selling the vaccines outside of work.”
It should not surprise anyone that various experts and organizations started offering events and webinars with guidelines on how to prevent the COVID-19 vaccine black markets that had already emerged elsewhere.
“”In a manufacturing plant you could have armed guards,” who prevent theft, Knight pointed out. But as a medication moves through the “chain of custody,” he said, “the closer you get to the patient, the less oversight there is and the easier it is to steal the vaccine or the medication.”” “Invistics uses machine learning and analytics to flag suspicious signs of strange medication behavior. But, as other experts pointed out, the danger of vaccine stealing may go beyond physical security: There’s a potential cyber element as well. “If sensitive formulas or research are stolen on how to produce the vaccine, other rival nation-states or even rogue laboratories could potentially produce illegal vaccines and sell them on the black market,” noted Trevor Daughney, vice president of product marketing at Exabeam, which develops security analytics technology. “In addition, if distribution plans are found and downloaded, cybercriminals might become criminals in the physical world by tracking down and stealing shipments to sell,” Daughney added.”
Bots used to manage vaccine appointment slots was complicated. There were so many problems getting vaccine appointments, that some of the bots were actually tools designed to help legitimate patients access appointments for which they were eligible. The flip side of this was, however, that not everyone has equitable access to the tools and technology and information to make it possible to access these tools. Then there were less nuanced cases in which bots hijacked vaccine appointments and redirected them to scalpers or patients outside the target audience.
““THANK YOU! THANK YOU! THANK YOU! I GOT MY DAD AN APPOINTMENT! THANK YOU SO MUCH!” tweeted Benjamin Shover, of Stratford, New Jersey, after securing a March 3 appointment for his 70-year-old father with the help of an alert from Twitter account @nj—vaccine. The success came a month after signing up for New Jersey’s state online vaccine registry. “He’s not really tech-savvy,” Shover said of his father in an interview. “He’s also physically disabled, and has arthritis, so it’s tough for him to find an appointment online.”” “But the person who created a bot that’s now blocked in Union County, 24-year-old computer programmer Noah Marcus, said the current system isn’t fair, either. “The system was already favoring the tech-savvy and the person who can just sit in front of their computer all day, hitting refresh,” Marcus said.” “Walgreens said it is using cybersecurity techniques to detect and prevent bots so that “only authorized and eligible patients will have access to schedule a vaccine appointment.” CVS Health said it’s encountered various types of automated activities and has designed its appointment-making system to validate legitimate users.”
“To do so, security measures such as bot detection and prevention will play key roles in delivering this critical service to patients.”
CVS said its program could thwart bot attacks. “Our vaccination appointment site has a layered defense that includes capabilities to detect automated cyberattacks, such as botnets. Those capabilities, together with our application design and user input validation, enable us to validate legitimate users,” a CVS Health spokesman said.”
“The complexity of securing vaccine appointments from the government, even without explicit evidence of bots tampering the process, inspired a few programmers to create website monitoring programs like Georgia Vax, Visualping and NYC Vaccine List, which alert people to available appointments at a local level for free.”
Today is one year from when I got sick with what we now know was COVID-19. Actually, last night would have been one year, as my first symptom came while I was at dinner with friends (a tickle in the back of my throat and a very slight cough). The next day I went grocery shopping with another friend, and noticed while in the check out lane that I was absolutely boiling, and dripping with sweat. That was when I realized I was sick. I’m rather amazed none of the friends I was with caught it from me, although one of them caught it months later, and luckily has recovered fully.
Last Monday my doctor and I had “The Conversation”; the “we need to think about what your new normal might look like if you don’t fully recover. You are still recovering, and you are still getting better, but we need to think about what life looks like if you can’t go back to everything you used to do.” Friday morning I woke up from a dream in which I had taken the bus downtown, and was wandering around windowshopping. As I started to wake up, I got confused, because I realized, “Hey, wait, I’m disabled now. Can I actually do this?”
Today I want to write a blogpost, but I don’t know how much time I have. Sundays are always bad. I started chilling once already, and the chill moved from my fingers up to my shoulders. I was afraid I’d have to stop, but the cold hadn’t hit my toes yet. Then I started burning up, so I know I have a little more time. Let’s see what I can get done before the chill sets in more deeply and I have to go lay down.
I’m in neuro rehab. Someone asked me what that looks like. Extremely briefly, neuro rehab is (for me) a lot of doing less: reducing exercise to avoid triggering crashes, and very short burst exercises to preserve muscle tone. I’m oversimplifying, but that’s the general idea. The idea is to learned what my warning signs look like, and stay within my “energy envelope.” Over the roughly six months I’ve been in rehab, I’ve moved from being able to walk five minutes once a day to walking farther but extremely slowly to avoid the shortness of breath and later crashes. This week I walked around the block for the first time in a long time (couple months?). It took me 50 minutes because I had to go so slowly to avoid triggering my body into a crash cascade. I won’t attempt walking around the block for another week at the earliest. The last time I triggered a major relapse was when I walked around the block for the second time in a week. So, I won’t do that for a while. Meanwhile, we’ve started using RingFit Adventure with custom workouts for the short burst exercises. (I just had to use cool tech, right?) When I started with this it was just the “jogging” (for me, walking in place), the Beginnia course, on “Light.” The game estimates this as 3.3 miles distance and should take 2 minutes. That first day, 2 minutes only got me a fraction of the way through the course and triggered a 2 day crash. A month later I finally succeeded in completing the course in 4 minutes. Now, I can complete that course in 3 minutes. I’ve also been doing some upper arm and core stabilization sets, and my rehab PT has designed custom exercise sets for me within RingFit, which my son programmed into the device. Right now, they’re still a bit much for me, but I’ll get there.
Reading, Then Writing
What do other activities look like? Well, I’m a librarian. Let’s look at how reading has changed for me over the past year. Reading is easy, right? It’s not like exercise, not physical at all.
For months, I actually didn’t read hardly at all, outside of work. I would finish work, stagger to the couch, cover up with piles of blankets. I’d rest while my son made dinner, then I’d try to sit up long enough to eat it. While eating dinner, we’d watch something on TV, usually something rather mindless and cheerful. It took me a while to figure out that cognitive work triggered crashes as much as physical exertion. I was frustrated that I just couldn’t make my brain work with the books I wanted to be able to read, the books I’d been reading before I got sick. When I was able to start reading, I had to keep my reading to simple distracting stories that took me away from my real world.
I also had to read only things that I had on an e-reader. You see, I couldn’t actually hold a book very long. My hands would shake too much, and it was exhausting to use my thumbs to hold the pages open. We would set up my Kindle on a tray, and I would tap the page when I was ready to move to the next screen. I also made the text larger, so I didn’t have to have it at normal reading distance from my face. (That’s another weirdness of COVID for me — my day vision improved, and my night vision worsened. This lasted for many months, and about 2 months ago my night vision returned.) I found MCA Hogarth’s books healing to my spirit, and have now read the entire Peltedverse series twice. In the beginning, I could only read a few minutes a day, and it took me a long time to get through the first book, but then I picked up speed, and now I am back close to my original reading speed.
Last summer a friend and colleague loaned me two books in print (Star Wars: From a Certain Point of View, and Once and Future Witches), both of which were absolutely fantastic. I started with the Star Wars anthology because it was short stories, and I figured that fit my mental energy envelope. I started out reading one a week, and worked up to one a day. Eventually I got to where I could read a few in a row, and finished the book. I don’t know how many months it took me (four? five?), but I finished it. For the witches book (which is fictional history about feminism, racism, suffragettes, and has a magical library in it), well, it’s a big book. It was hard for me to hold. I started in December. Again, I had to start slowly, and build up to where I felt I could hold the book for reading. It took me about 2 months to get halfway through the book, and then I finished the second half of the book in less than a week. It’s a really amazing book. I wanted to reread it immediately, but I’m waiting.
Right now, I am still reading mostly on the Kindle, but am trying to read a few pages in a real book each day. I am still reading mostly light weight entertainment, but am building up my mental strength with poetry and research articles. I’m in a couple book clubs, and have been buying the books for those groups, but have not been able to complete reading them. I’m finding writing challenging, but with help (a LOT of help! and a co-author!) I was able to finish a book chapter on deadline, and it feels good. My articles for research journals are all on hold for the moment, but I hope to be able to get back to them within the coming month(s).
More to Come
Next time, maybe I can talk about laundry, dishes, and cooking, LOL! Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs) are still things for which I can do fractions, broken up into pieces, and stretched out (we call this “pacing”). Like everything else, these were a lot worse several months ago, and are a lot better now, but better is still a long way from what I could do before.
Research from SARS-CoV-1 shows that people who had LongCOVID types of reactions to that virus tended to recover in waves. Most within a few months. More within 6 months. Then another group by a year. Almost all within 2-3 years. A few never fully recovered. For me, I’ve had these kinds of conversations with doctors before. I had serious carbon monoxide poisoning back in 2002, with amnesia. Two years out my doctors told me what memories were still gone were lost forever. But even now, decades later, I’m still recovering memories. I’ve learned that neuroplasticity is a magical thing, and that you feed it by TRYING to do things. The basic message is that I’ve come a long ways, and I have a long ways to go, but I’m also a long, long ways from giving up.
Today is eleven months since I got COVID. I’m still recovering, rebuilding, and it looks like I’ll get there, but it’s going to take a while. A dear friend said, “I’m waiting for you to tell me you’re better!” Well, … I’m better, but I’m still a long, long ways from being well.
So much I want to say, and I had planned to write a blogpost today, but I’m not sure I can. On Sundays, I typically have 1.5-2 hours of useful time, but I used a chunk of that on something that came up work-related. Right now, I’m chilling pretty significantly, but have bundled up, piled blankets on my lap, am wearing a blanket poncho, two hats, two pairs of pants, gloves, and have 20-40 minutes before I have to stop for the day. If I’m lucky.
So why so little time, and why specifically Sundays? Because I wash my hair on Saturday nights. You may remember that there were issues with showering triggering crashes and relapses, and that this took months to figure out. Then it took months to try to find a solution. I spent a lot of money on things like shower-chairs, special kinds of shampoo, special shampooing brushes, adaptors for the sink faucet, and more. The only thing that actually worked and is still being used is the hairbrush, but we are using it for hair drying instead of shampooing, and mostly just because I like the way it feels.
Basically, I have not showered in months. Specifically, since December 5th. That is not something you want to admit in public in our society. Something I’ve learned over the past few months is that there are a LOT of people who don’t bathe or shower regularly, and you don’t know about it because of the stigma we associate with it that keeps them from talking about it, but you don’t know because they are actually fine. It turns out our bodies never evolved to shower or bathe daily, you know? Before COVID I was a daily-shower kind of person, so this is a big adjustment for me. After COVID one of the problems I had that I wasn’t talking about in public was all the skin lesions that just wouldn’t heal. I will spare you the description of how gross it was, and it went on for many months. I stopped showering because of the crashes, but to my surprise, when I stopped showering, the skin lesions healed up! Bonus prize.
Okay, December 5th. What was happening with the crashes from showering was that they were getting worse and worse, not better. The crashes were worse, and the recovery seemed to take longer each time. There’s layers of my body responding. There’s the immediate chilling, and the next day crash, and the three days later crash. The crash in early December? The worst ever. I’d showered Saturday evening. With a shower chair, the space heater turned up as high as possible, special fragrance-free anti-allergic shampoos, eating spicy food right before and drinking hot beverages after, laying down as soon as I was dressed again, etc, etc, all to try to keep me from crashing and chilling.
The next morning I woke struggling to walk, and then crashed BAD. Pulse of 51, oxygen of 93, and I didn’t think of taking my temp. I couldn’t lift my arms or raise my head. I couldn’t cover myself up or uncover myself. I was freezing, chilling, crying and couldn’t stop, even though there was no good reason why. Rather than keep going through this, I wanted to be dead. It just felt like it would be easier, and I felt out of strength for coping. Obviously, I was too weak to do anything, and I wasn’t planning anything, and I knew I’d probably feel okay-ish the next day, but I made the mistake of saying aloud that I would rather be dead than have this keep happening. Instant family crisis! I’ll spare you the details.
It took a few days before I could really function again. I knew I couldn’t do that again for a long time. I just can’t risk it. So we switched to sponge baths and sink shampoos. It’s better, but I still crash after the sink shampoo, so we plan those for a day when I can build up the strength to do it, and have a day to recover. This means I can wash my hair ONCE a week, and that is Saturday evening, and Sunday is when I crash. I spend my weekends mostly pretty flattened. But that’s still way, way better than wishing I was dead.
I’m in neuro rehab now, and on a 50% work reduction for a bit. I’m taking more breaks and resting occasionally during the days. I’m trying to plan my days to allow this. I’m working on work-life balance. I’m doing more exercises, but sometimes when I start something new, it knocks me back down and I have to build back up again. And I can count on shampooing triggering a crash of some sort each week. If today follows the pattern of the last few weeks, I’ll be back up on my feet briefly around 4 this afternoon. Right now, I need to go lay down, but I made it longer than I expected!
I’ve been attending a ton of virtual conferences and events, and have done so for many years. Something to keep in mind for virtual is people attending from many many timezones. Another thing to keep in mind is that people are attending from home, and may have distractions or demands different from when they attend in-person. Yet another is that audience is likely to include people who would not or could not attend in person, people from resource-poor communities, people with disabilities, people who just don’t travel for whatever reason. This means that your audience will very likely require different kinds of accommodations than for a face-to-face event.
The days will need to be short, and on a weird schedule. 10am on the east coast is 7AM on the west coast, 3pm in London and Paris, 1AM in Sydney AU. If we do a full day, we are looking at probably 10amET-7pm, with a one hour lunch break. Whatever form breaks take, they will have to appear at some point, and that time has to be planned into the schedule.
Some folk believing that the audience will be fine with back to back sessions and no breaks. What we’ve been learning locally is … no. No, the audience is absolutely NOT okay with meetings that have no planned breaks. There are a lot of reasons for this, but here are just a few.
People who really love your content don’t want to leave, and get cranky when you force them to stay past the point of comfort.
People who don’t really love your content interpret the lack of breaks as a sign that you don’t care if they stay or not, or engage with your content. So they take breaks. Lots of them.
People who really, REALLY love your content? This gives them a chance to mentally process the content and retain it. Good teachers know the power for learning of a well-timed break.
People with disabilities see this as … ableist. Sorry, but it’s true. The assumption that it’s easy for people to pop away quickly, take care of bodily needs, and pop back, all without missing anything important? If you think that’s a thing, you are clearly someone who is temporarily able-bodied and not thinking about those in other circumstances.
Breaks offer a change for physical activity, improving health for everyone. Especially at health and medical events, it behooves us to set a good example with this.
Breaks ease stress on body and mind, improve health, improve engagement, improve learning, increase engagement, increase a sense of respect and gratitude for the event planners, and increase the perception that the event planners have a sense of gratitude and respect toward the attendees.
I really feel very strongly about this, and that building in brief breaks is not only a kindness to those who need them, but communicates and supports a healthy approach. Here at UM, we are being told to schedule in breaks every 60-90 minutes, and HR encourages everyone to take a 3 minute physical activity break every 60 minutes. They say it actually reduces the University’s health insurance bills! Many professional meeting planners and event coordinators are also endorsing that concept.
For virtual meetings, there is a lot of creativity that can feed into your breaks. One idea to consider around the idea of building in breaks, is to make them working breaks. Have drop in Q&A sessions on special topics for those who wish. Maybe that’s when you highlight tools or resources. Have your long panel discussion, and then follow it with a break with a drop-in Ask-Me-Anything (AMA) on a related topic, or an extended more private Q&A by the panelists. You can set up entertainment during breaks — local musicians, show a YouTube video that leads into the next session, or have brief breakout rooms focused on topics of interest. Another idea I read about was doing kind of improv quick discussions during short breaks, pose a problem or question, and let people brainstorm approaches or solutions. Build in breaks, a bit of flex time, and still make that productive useful time for your content. Have the organizers take turns hosting the break time conversations, and that way they also get breaks the rest of the time, while colleagues share the load of keeping the audience engaged during breaks.
A lot of the conferences I’ve been attending have opted for full days, but many people came late and left early to accommodate the needs of their location and their life there. A few have opted for shorter day events to avoid that challenge, and those events actually seemed to have consistent attendance throughout the day! It seemed that 10a-3p ET worked for the North American audience, and that would actually work fairly well for European folk as well.
Just remember — if you are planning an online event or virtual meeting, those breaks are also critical to the event and organizational staff. These days, you really should have ASL interpreters and captioning. Those people are not machines, and they need breaks, too. You need to hire extra interpreters and captioners so they can switch off. Building in solid breaks that don’t require them can save money for the event, meaning you hire a team of two to switch off instead of three or four. It also leaves space for smooth handoffs between support teams, which can minimize needing to break up the presentation flow.
The main takeaway? Building in breaks helps EVERYONE (organizers, funders, attendees), and makes for better learning during the event, better engagement with the content/activities of the event, better health and less stress for all involved, … Good breaks mean you planned a better event,
Conferences that Work: Schedule Breaks During Online Meetings “When you don’t schedule enough breaks, people will leave an online meeting seemingly at random. Sometimes they’ll do this because they need to, but the other meeting attendees don’t know this. As a result, the meeting will feel unnecessarily disjointed, and it’s easy for participants to conclude that the meeting is not so important, or boring, or a waste of time.”
International Institute for Facilitation and Change: Why your meetings need breaks “Breaks are strategies to increase participation and satisfaction in meetings. … The truth is: If breaks are not scheduled, people get up and leave the room anyway to attend to their physical and emotional needs. Many meeting participants are genuinely busy people who need time to attend to other aspects of their lives. If breaks are not scheduled, they will distract others by making telephone calls, answering email, consulting with colleagues, etc. during the meeting.”
Meeting Professionals International: Entertainment and Wellness Break Ideas for Virtual Events “To combat waning attention spans and keep people engaged, it’s important to provide your virtual attendees with time to clear their minds, get energized and reset their focus. That’s where entertainment and wellness breaks between sessions can play a key role in enhancing the overall virtual experience. Fun, lively and interactive activities help people stay focused and pumped up for your next round of programming. They also help participants stay motivated to return to your virtual event rather than check out on their phones. In other words, you must give your participants a compelling reason to tune back in or risk losing them altogether.”
Advice for Engaging Virtual Conference Attendees “How long will someone sit at a computer? No one really knows how attendees will behave during a virtual conference. But we know that attendees need variety and they need breaks.” “Breaks. Use breakout rooms for snack and lunch breaks where attendees can talk about aha moments. Or, open some up as drop–in lounges for discussions on specific topics, for example, dealing with the economic impact of this crisis.”
Today it’s been roughly a week since I was able to walk around the block I live on. That’s in part because I’ve been doing other things. Conference presentations, physical therapy, meetings, research, too much. My current tentative diagnosis is viral post-COVID dysautonomia. Briefly, dysautonomia means that all those things your body is supposed to do without you having to think about it? They get messed up. Like this.
Sometimes my body forgets to breathe, and I realize it when I get dizzy or the computer grays out. Sometimes I’m walking towards something, but veer sideways instead. My heart might decide to go extra slow (bradycardia) or extra fast (tachycardia), and it doesn’t have anything to do with how active I am or how fast I’m moving. I feel too cold, or too hot. People think fevers with COVID, but for me it’s been more chills. When I was actively infected, my body temperature tended to be around 93F, instead of the 104F they warned people about. Yesterday it was 96.8F. This morning it’s 94.6F. I don’t just feel cold, I am cold.
Now, this probably sounds weird to folk whose bodies are behaving and doing what they should, but it’s actually not unusual for folk in the long COVID community, a.k.a. COVID long haulers. COVID is weird, and it can damage basically any part of the body. That damage is showing up in a lot of different ways for different people, but among the leading trends are new diagnoses of dysautonomia and myalgic encephalitis/chronic fatigue syndrome (ME/CFS). Along with these, people are showing up with new issues that look like mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS), heart issues, lung issues, kidney problems, diabetes, sleep problems, brain fog, memory loss, skills losses, and neuro issues. Some of my long COVID friends have had to get pacemakers. And we aren’t even hardly talking yet about things like PTSD or depression.
Weird, WEIRD things happen. I read about a guy who lived in another country, married a woman there, had a family, got COVID, and forgot how to speak the language. He can’t talk to his wife anymore. That’s when I realized that I’ve lost some of my French. I used to be fairly fluent, and I can still read it, but when I try to speak it, it feels like I tugged on a rope and it broke. There’s just nothing there, but it feels like there might be. I don’t use my French often anymore, so I hadn’t missed it, until I tried.
The long hauler groups are full of people with weird things happening trying to figure out if this is still part of their COVID experience, or is it something else wrong that they are attributing to COVID? Women on the cusp of menopause tip over and their periods just stop. Women in their 30s show signs of early menopause. Women past menopause find their periods start again. Women who always had normal menstrual cycles find their schedule is out of whack, and their periods are much lighter or heavier, or both, or their period starts and doesn’t stop. For weeks. There’s lots of talk about hair falling out, or turning white, or color changing. Sweating when it isn’t needed, or not sweating when you’d expect it. New onset of diabetes. Clusters of symptoms from the infection that just don’t seem to ever stop.
So. What do we do? I mean, how many folk have had COVID now? And how many of those will end up with some version of LongCovid? Estimates range from a third to 10%, but clearly it is going to be a LOT of people. If the USA put 10% of its total workforce on disability for long term impacts of COVID, we’d be in a world of hurt. Can insurance cope with the costs of rehabilitation? Does rehab even work?
Lucky for us, the UK is way ahead of us here. They were hit with COVID before most of the USA, and they have socialized healthcare, so they are on top of this, figuring out what works. The National Health Service already has a website for COVID long haulers: Your COVID Recovery. They have a handout for patients, and planning documents for healthcare organizations that include a list of services these patients are needing (so far). One thing that seems to prevalent is a kind of neuro-rehabilitation. Basically, over-simplifying, this means we are trying to remind our nerves how they are supposed to work, and sort of jolly them along with, “Good! You can do it! That’s right, you’re getting it!”
Last time I saw my doc, they told me that my knowledge of LongCovid is way ahead of theirs. I am (surprise) really paying a lot of attention to this (see Twitter thread). My doc can support me by ordering tests and requesting therapy, but the expertise just isn’t here yet for what to do for folk like me. I’m passing along resources I find, being highly selective and focusing on clinical care. We talk about them, and decide what seems most reasonable for me and my cluster of weirdnesses. I try to negotiate insurance coverage for whatever, and maybe we try it, maybe we don’t. Right now, neuro-rehab is the name of the game, and I started PT last week. If you’re curious about what a day-in-the-life might look like for this, here’s an excerpt of my symptom log from last weekend, the day after my first PT visit, lightly edited for typos and spelling.
Woke up, showered. Resting Pulse: ranged from 45-67bpm Oxygen levels ranged between 90-100 Tired early. Had trouble watching the morning virtual events. Couldn’t sit up. Had to lay down by 10:15am Left hand tremors Chest pain – brief Palpitations Felt outside of the world Cold, lots of blankets (4+dog) Debilitating fatigue Couldn’t hold phone or open eyes, but wasn’t sleepy Arms weak Slurred speech Cold feet. Hands were warm Tinnitus ringing in both ears Later it felt like the tinnitus was in my brain instead of my ears. Brain fog Voice froggy/staccato-y all day Came out of brain fog about noon, could hold phone. Feet still cold Cold spreading up legs. Kind of burning cold. Sleepy again by 1pm. Kiddo made me eat an omelette Took blankets off at 2pm, put them right back on. At 2:30 took off top 3 blankets. At 3:30 took off last blanket. 3:40 back on. Checked pulse/ox. Ox was 92. No wonder I feel crummy. Up to 98 some minutes later, but dagnabbit, body! Right leg fizzing . More naps. 5:30pm. I think I can stand up soon. Sit up. 5:45pm. Sat up. Drank morning coffee 6:56pm came out of tunnel vision, and again at 6:59. Evidently layers of tunnel vision Tinnitus moved back to left ear A few brief hot flashes, none long enough to take my sweater off 7:38 stood up and moved. Discovered skin peeling in new spot Mild pressure in head Nighttime: firefeet, burning scalp , sweats.
Yeah. Fun times. Today is the end of the 7th month since I caught COVID.
Today is officially six full months since I first got COVID. I haven’t posted here since day 101 of this journey. I am really sorry that my blog has turned into nothing but #LongCovid updates, but I just am doing everything I can to get through my projects and meetings with work, and blogging is extra. All the tech goodies will come back, some day. I’m still collecting them!
My doctors all insist that I had COVID and that we just missed the window of opportunity for testing. I get messages from my primary care doctor with the subject line: “COVID Long Hauler.” That’s actually pretty validating. This has been a long, loooong roller coaster ride, getting better, crashing, starting over. Currently, the best guess we have is viral post-COVID dysautonomia, and this is functioning as diagnosis for the purpose of requesting therapy. My doc did some research, talked with other docs, and had some good ideas. Insurance won’t cover them all, so I’m starting with what insurance will cover: physical therapy.
The past week has been better than I’ve been in a long time. I had 3-4 days where I was able to work, make food, and actually do a tiny bit of household chores. Then, of course, there were 3-4 days where I had a crash, but was able to crash and get back up, even if I wasn’t able to do everything I wanted to get done. But just two weeks ago … well, this is my Facebook post from then.
AUGUST 30, 2020 (Day 170)
DS: Are you SURE you don’t have COVID anymore?
Me: I test negative.
DS: I know. But are you SURE you don’t have it right now? Are you SURE sure?
I’m guessing that some of my friends here probably have dysautonomia, but I’m new to this. It’s part of whatever COVID did to my body, and evidently most of what I’ve been thinking of as relapses has actually been this new damage to my body asserting itself, in unpredictable ways, at unpredictable times. Sometimes my heart goes too slow, sometimes too fast. Sometimes I can’t catch my breath, but my oxygenation levels are fine. Sometimes my oxygenation levels are not so great, but I feel fine. Sometimes I feel like I have a fever, sometimes I chill. My balance is rotten. Sometimes I have a sense of pressure in my head, usually (but not always) with brain fog or headache. When I tried going to the grocery store on the bus with my son a couple weeks back, the pressure in my head lasted for a week and a half. Don’t worry, they’ve done tests, everything seems normal. They don’t know what’s causing it, but that sense of pressure in your head is reported by a lot of the COVID long haulers. So, normal for us, I guess. Yay?
This morning, my hands were shaking so bad I couldn’t type. When it kept going on, I decided to walk the dog with my son. I made it about an eighth of a block before my lack of balance made it clear that walking was going to be a challenge today. I don’t know how I’ll ever get better if I can’t walk, tho, so I held onto my son’s arm, and kept going. When we got home, my son ordered me to the couch, and I laid down.
After about a half hour I started chilling, and this was chilling like when the COVID was bad. I knew the temp outside was in the 70s, and I was on the couch by an open window. It wasn’t that cold. I finally asked my son to help me cover up. He came over and checked how I felt, temperature-wise. He says my hands were like ice. They were so cold it scared him. That’s why he was asking if I was sick again.
He covered me up with two blankets. Folded them double. At my request, added another. At my further request, he added two more over my chest. I ended up with six layers over my legs, and eight over my chest and arms. After an hour, I felt warm-ish to me, normal to him. He felt blazing hot to me, which is … the usual 98.6, you know?
I had a lot of plans for things I was going to get done this weekend.