Author Archives: pfanderson

Ten Tips for Being a Patient

Photo of a large red button labeled with the text "Push for Help."
Flickr: RosefireRising: In the Doctor’s Office — Push for Help

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Screenshot of the WKRN article on easy long COVID diagnosis which is  linked in the blogpost.
I started here, with the WKRN version of the article, trying to answer, is this good information?

What is the problem here?

Y’all know I have Long COVID, and of course, I’m in several online support groups. Last week I saw a whole spate of news articles with titles along the lines of “simple blood test can tell whether patients will suffer from long covid.” That would be really nice if it was true, wouldn’t it? To me, it sounded too good to be true.

As a librarian, you kind of build up instincts around the information pitched at you. We all sometimes get it wrong, and I don’t always have the energy or time to check out a piece before I post it. Sometimes I post things so I can come back and look at it later. Sometimes I post things I don’t trust just as an example of how bad things can be. I warn people that my posting a link doesn’t mean I endorse it. Sometimes people push back and educate me about how bad something is, and I’m grateful for those conversations. Sometimes I post something and say, wow, this is really bad, and then bots come out of hiding and jump on the post, trying to trick me into getting a conversation going. (That happened last week, and I ignored the ones that used polite language and reported and muted the ones that didn’t.)

Why does it matter?

For this piece, the first time I saw it, I didn’t have time, so I left it alone. It kept coming up, though, and other patients were saying they were going to write to some of the researchers mentioned and find out if they could get the test. There are so many horror stories I see in the LC support groups, of people whose doctors don’t believe them and won’t support them, of people who lost their insurance or their jobs because testing wasn’t available when they caught COVID and they were instructed to stay home, and now the people with the resources don’t believe they are genuinely ill. It seems that people with Long COVID fall into one of four groups: 1) those who tested positive by PCR, and have antibodies (a tiny minority of the community); 2) those who tested positive by PCR but never developed antibodies; 3) those who tested negative by PCR or couldn’t get tested but later were shown to have antibodies; or 4) those who tested negative by PCR or couldn’t get tested and never developed antibodies. Group 4 seems to be the largest group among the Long COVID support groups. Some of the Group 4 folk, like me, were lucky to have a clear documented exposure and were able to get a clinical diagnosis based on symptoms. Most are not.

People did exactly what they were told to do (stay home instead of getting tested or going to Emergency), and now they have been ill for months or over a year, and are suffering while basically being punished for having followed directions. By “punished” I mean they are being denied access to treatment, rehab therapy, specialists, time to rest, accommodations; their insurance is denying coverage; their doctors won’t refer them to treatment; their employers say they are faking it, and fire them; and they are being denied unemployment and/or disability because they are ‘choosing’ to not work. If you can’t prove you had COVID, you also aren’t eligible to participate in many of the research studies, and most of the important research studies on Long COVID are excluding the majority of the people with the condition, who were never able to get a positive PCR test, for whatever reason (access, ability, permission, timing, other). This creates significant flaws in the emerging research around Long COVID, because we have no path to discover what is different about this majority community of people with Long COVID who never tested positive, and we can’t learn if the treatments are different for them. Even more important, if we knew what was different about them, we might be able to predict who would develop Long COVID and protect them. Right now, the only way to be sure you won’t get Long COVID is to never get COVID.

You can see a test that could prove someone has or had Long COVID would open the door to services and resources and legal protections that many are absolutely desperate to receive. I attended an IOSH webinar last week on Long COVID and return to work in which one of the presenters, with deep emotion and expressiveness, said something like, “I don’t understand why we are requiring people to prove they had COVID before we will help them. They don’t want to be this sick.” But, for now, in many places, you still need to be able to prove you had COVID to get help, and there are people hanging on by the skin of their teeth waiting for a test exactly like the one described. That’s exactly the sort of audience that snake oil salesmen look for, desperate people, to take advantage and to find a way to monetize, either by getting them to pay for fake tests or fake treatments or through tricking them into loading pages of bad information stuffed with advertisements, or getting them to actually buy the things being advertised, or clicking through to pages that leave pieces of code on their machine that scrape information about them. Many people don’t stop to think that going for the best information isn’t just about wanting the good information, it’s also a security issue, and potentially a financial one as well!

Is it good, step 1: Who says so? Authorship

So, I wasn’t trusting this, and over the weekend, I took a closer look at the original posting I saw in one of my support groups, which was from a Nashville TV station. Not a source I would normally seek out for cutting edge medical information. Local news sources tend be absolutely brilliant at local news, and not so great with world news. WKRN got their version of the article from a place called StudyFinds, which has the tagline “Research in a Nutshell.” I found another copy of the article posted with substantial edits by the DailyMail in the UK, who at least tried to contact a few researchers to quote, but the DailyMail is, shall one say, not the most reputable news source in the UK? And a tad biased? Although they have been working on their reputation, a friend of mine from the UK still calls it the Fox News of the UK.

Curiously, the Daily Mail version of the article was published with a byline (Mansur Shaheen), the day after the StudyFinds version went live (if their posted dates are accurate). Daily Mail: “PUBLISHED: 17:52 EDT, 16 August 2021 | UPDATED: 18:14 EDT, 16 August 2021”; StudyFinds: “AUGUST 15, 2021.” I took a look and Mansur Shaheen published five articles last Friday for the Daily Mail. That’s a lot. I remember when I used to post five blogposts a week, and how exhausting that was. This piece was the last of four Mansur published for DailyMail on August 16. Yikes. Reading between the lines, it looks like Shaheen uses a strategy of finding pieces from other places and polishing them or revising them enough to claim authorship. That’s probably a really useful strategy outside of academia, but since I am an academic I can’t help but think what my profs would have said if I had tried something like this while in school, or what happens to researchers who take one of their own pieces and rewrite for another journal. This isn’t considered a strictly ethical strategy within the venues for high caliber evidence. It sure is taking me a lot more time just to do this one blogpost.

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

I’m still debating about whether Mansur Shaheen who writes for the Daily Mail based in New York City is the same Mansur Shaheen who is “Deputy Editor at SB Nation’s Pride of Detroit, Election Reporter for Bridge Michigan, Freelance Journalist,” but it seems likely. I don’t think this is relevant to the rest of the story here, but it just fascinated me to find a Michigan connection while working through this, and it speaks well of his work that Mr. Shaheen is proud of his work and has a strong online presence. But I’ve gotten sidetracked, and let’s get back to the Long COVID simple diagnosis article. In the StudyFinds version of the article the authorship is listed under the generic name of “StudyFinds,” but if you read the whole thing and go down to the bottom, you will find a contributing writer named Mark Waghorn. I couldn’t find much about Mr. Waghorn. There are a lot of people with the same name, several of whom are in high profile positions in other industries (finance, architecture, banking, sales, even a race car driver). I was able to find people named Mark Waghorn who are writers. They might be different people, or they might be the same person, I can’t tell. One is a playwright and another an automotive technical writer, but both are in the UK, so who knows? In any case, that I can’t find much about a writer of that name working in healthcare journalism inspires little if any confidence in the article.

Is it good, step 2: Who says so? Publisher

You can search that title phrase (“simple blood test can tell whether patients will suffer from long covid”) on Facebook and find several different news stations posting their own copies over the past week. All of these places appear to have gotten the article from StudyFinds, so I took a look into them. It’s a pretty good (as in well-camouflaged) click-bait news site, near as I can tell. I want to call them a fake news site, but that isn’t strictly accurate. They mix up a lot of true bits and pieces with hyperbole and misleading headlines and stuff the site full of advertising. They make it really hard to find the actual true bits and they make it hard to get off of their site. Their links keep pushing people to other pages on their site full of other ads. They farm these articles out via newswires where they are picked up by a lot of small local news sites. I’m not saying they don’t have some good information in there, I’m saying it’s hard to get to the good stuff and they are monetizing the audience and manipulating the reader to make more money off of them. This isn’t necessarily a bad thing, it just means you are getting what you pay for. They describe their mission as follows:

“StudyFinds sets out to find new research that speaks to mass audiences — without all the scientific jargon. The stories we publish are digestible, summarized versions of research that are intended to stir debate: We do not agree nor disagree with any of the studies we post, rather, we encourage our readers to debate the veracity of the findings themselves.”

https://www.studyfinds.org/mission/

So who are StudyFinds? This is where things got really interesting. My first step was to look for their “About Us” page, who they say they are, their stated mission, and who’s writing for them. They actually have some real journalists as authors, but they also had a bit my radar latched on to which said pieces picked up from newswires and pieces from people who prefer to go nameless would be posted under a generic authorship. Guess what? A lot of their posts are under generic attribution.

I dug a little deeper. In the footer for the StudyFinds site, the copyright line goes to a company called “41 Pushups, LLC.”

Screenshot of the footer of Study Finds, with the copyright statement "(c)2021 41 Pushups, LLC."

Is it good, step 3: Follow the funding

Most companies, well, most legitimate companies, try to choose distinctive and unique names, so that when you search for them, you will find them and not other groups or information. When you search “41 Pushups, LLC” you find an awful lot of articles about how many pushups make for a good exercise program. It’s hard to find the company, but, hey, I’m a librarian.

41 Pushups, LLC doesn’t appear to have an actual official web presence (which is curious all of itself), but they did register their name. It’s curious that StudyFinds was founded in December 2016, and that the company that “owns” them was registered less than a year ago.

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

The address they are at is “8 The Green, Ste. A, Dover, DE, 19901.” There are a LOT of businesses at this address, or at different suites within the same building. The building doesn’t seem to be that big, but that’s because these are virtual offices. They have a legally registered mailing address in a state with desirable laws, and they can operate a business under those laws while in reality the company could be anywhere in the world. 41 Pushups, LLC appear to be one of the over 250 LLCs sharing a single virtual address in Delaware which are under investigation by the SEC.

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

Is it good, step 4: Who else says so?

So is the news article totally completely fake? Well, we don’t know at this point in the process. I tried to verify the authority and credibility of the author, the organization providing the information, and failed to find information that would do that to my satisfaction. I tried following the links provided in the article, and that wasn’t useful either. The next step is to try to verify the content of the article directly.

There are a lot of ways to look at this. I started by trying to find the researcher who is cited as having made the discovery, and this time that paid off. Sometimes it doesn’t. Sometimes it isn’t straightforward to figure out which of the people mentioned in the article are the person you want to find. In this the article, they quoted so many different people as having said different things, in the support groups, people were trying to contact any or all of them, or whoever was located near them geographically. Many of the quotes were taken from other articles, and were not necessarily solicited specifically for this piece. This means the effort spent to try to contact the organization or researcher will not only take up valuable energy for no purpose, causing harm for these vulnerable and exhausted patients, it will also take up time and energy for whoever receives the request for information who are likely to not actually know anything about this topic.

You can see some of my search process reflected in a Twitter thread I put together while I was feeling frustrated with all of this. I identified Mark Wills and Nyarie Sithole, both of Cambridge University, as joint researchers on this project, and looked for recent news with both names. I first found a local news report on the topic from Cambridge. Remember earlier where I said local news is really excellent for their own news? I won’t trust a Nashville local news report on science from Europe, but I will trust a Cambridge local news report about Cambridge discoveries. Even better was the next thing I found, which was an official press release from University of Cambridge.

Is it good, step 5: Who has the right to say so?

This is also interesting. You see, the official press release was published under a Creative Commons license. This gives other people the legal right to rework and republish. So far, that would make it seem like what StudyFinds did is legally if not ethically sound. However, there are several different varieties of Creative Commons licenses. University of Cambridge used a CC04 license: you can share and adapt the original, as long as you include “Attribution — You must give appropriate credit, provide a link to the license, and indicate if changes were made.” None of that appears in the StudyFinds version of the article, at least as far as I could see. I had to close 8 ads before I could try to print a reference copy.

Now, this assumes that the StudyFinds version of the article was actually based on the official press release. What if it wasn’t? As I kept looking, I found an article on this from the NHS, the National Health Service for the UK, but specifically from the hospital involved in the research. This was dated July 18, the day before the U. Cambridge press release (July 19). What makes me think that this might be the original source is that the photos used in the StudyFinds version are the same photos used in the NHS version. There was no license nor copyright statement included in the NHS post. I know in the United States certain types of information produced by the government are created free of copyright. I don’t know if this is true in the UK, but with some more digging I found out about “Crown Copyright,” which sounds similar. I wasn’t able to easily discover if the portions of Crown Copyright which make some information free to reproduce and modify apply to NHS information, but I did find that some NHS organizations apply this to some of their information, with restrictions like these: “Permission is granted to reproduce in any format for your personal and educational use free of charge, provided it is reproduced accurately and not used to mislead. Commercial copying, hiring and lending is prohibited without express permission.”

Is it good? The answer: Part maybe, mostly FAIL

So, there actually is an original source, which gets absolutely no attribution or credit in any of the pieces currently making the rounds. While I was eventually able to verify the validity of the core of the information provided, my efforts to do so raised many worrisome concerns about the original versions of the article which are being shared, concerns about ethics, legality, accuracy, and intent. So. Sigh.

Before I leave this, I want to point readers to the CRAAP test, which highlights five key elements to consider in evaluating information quality: Currency, Relevance, Authority, Accuracy, and Purpose. For this effort, I didn’t really consider currency, since all versions of the information are within the past few months. Ditto relevance. Where this became concerning was when looking at authority, accuracy, and purpose. StudyFinds took a press release about a research study that just begun, with the release focusing on that they now have the funding to do the study, and StudyFinds rewrote it to sound as if the study is almost done and the test will be available soon (ie. inserting inaccuracies and misleading information). They did so as clickbait to generate advertising revenue for themselves, while obscuring any link to the original information source. I call this a FAIL. The original information from the NHS and U. Cambridge was good, although not as exciting as StudyFinds makes it sound, but what came out of StudyFinds is nothing but clickbait.

Pacemakers, Defibrillators, & (Almost) Everything Apple

An iPhone peeking out of the left pocket of a blue & brown floral Hawaiian shirt.

This is to boost awareness of Apple’s release a couple days ago of their list of devices (a long list!) that might interact in not-so-great ways with pacemakers and defibrillators and other implanted medical devices.

Apple: About potential magnetic interference with medical devices

This isn’t a new idea or a new problem (risks of cellular phones to pacemaker patients was mentioned as early as 1995!), but the technology in phones has gradually changed to become safer in many ways, and the technology in pacemakers has also been changing. Early on, the problems were more related to frequency and power, but those problems were largely sorted out by 2010. Experts spent a lot of time over several years working to convince people to not be too scared of their phones or other devices. Harvard, in 2015, reminded folk that the risk is small, and can mostly be avoided by never carrying your phone in your shirt pocket and answering your phone on the opposite ear from your pacemaker.

Now, the concern is about magnets in the devices.

US: FDA: Magnets in Cell Phones and Smart Watches May Affect Pacemakers and Other Implanted Medical Devices

This was followed up by a report in JAMA, on June 15th.

Voelker R. Do Magnets in Consumer Electronics Disable Implanted Medical Devices? JAMA. 2021;325(23):2336. doi:10.1001/jama.2021.8898

The gist of the messages still is to not put your phone in your shirt pocket (or any of the other devices on Apple’s long list, including iPads, chargers, and more). You might want to also think about backpacks, since you want to keep the device a solid 6 inches away from your pacemaker or defibrillator.

(un)Diagnosed: Day 429 (14 Months, 61 weeks) Better, and Better, and …

A grid of four photos shows macros of (clockwise from upper left) a Pedialyte bottle, digital thermometer reading 95.4F, nebulizer tubes, and a pulse-oximeter reading 96% oxygenation with a pulse of 56.
Pedialyte, 95.4F temperature, nebulizer tubes, pulse-ox = 56 pulse, 96 O2.

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.

Staying Safe on COVID Vaccination Sites

CDC: Vaccine Finder: https://vaccinefinder.org/

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.

Telling the Good Sites from the Maybes

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.

  • C = Currency
  • R = Relevance
  • A = Authority
  • A = Accuracy
  • P = Purpose

This is short and sweet, unlike the one I came up with many years ago: CHAIN of TRUST (2006), when I tried to simplify the really, REALLY complicated one in my book (1998-2004).

  • C = Candor
  • H = Honesty
  • A = Accountability
  • I = Information Quality
  • N = Neighborly
  • of
  • T = Timeliness
  • R = Relevant
  • U = Unbiased
  • S = Scope
  • T = Trustworthy

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.

Screenshot of text: "We want to make vaccination easy and accessible to everyone.
VaccineFinder is a free service where users can search for locations that offer vaccinations. We work with partners such as clinics, pharmacies and health departments to provide accurate and up-to-date information about vaccination services. VaccineFinder is operated by epidemiologists and software developers at Boston Children’s Hospital and supported by the Centers for Disease Control and Prevention and the United States Digital Service."

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.

Vaccine Finder: Search Results for Ann Arbor area.

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.

Screenshot shows Michigan Find-a-Shot page, with map showing dots for location, and a text-based list of locations in Lansing and Jackson.
Find-a-Shot: https://www.findashot.org/appointments/us/MI

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.

  • Government
    • Federal
    • State
    • County
    • City
  • Insurance
  • 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.

(un)Diagnosed: Day 398, Week 57, Month 13: Making Progress

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…”

PF Anderson, Singing, #NaPoWriMo 2021 Day 10.

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.

"I didn't like seeing my friends. It wore me out. Everything was hard for me: having a conversation, focusing, not being tired. I had to prep before they came over, sleep and store up my strength." Image shows a grayscale pencil sketch of two young women talking while a third stands smiling in the doorway behind them.

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.

The NICE Transgender Evidence Report (and How to Read It)

"Enough’s enough. In the last 24 hours 
@hannahsbee
 & I have been called dishonest journalists, unethical, accused of killing children, liars...All for highlighting the lack of good evidence for an intervention used on kids & reporting on whistleblowing concerns at an NHS service" Deb Cohen
https://twitter.com/deb_cohen/status/1378099014340579331

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.

Resources

Evidence for puberty blockers use very low, says NICE https://www.bbc.com/news/health-56601386

NICE, 2021. Evidence review: Gonadotrophin releasing hormone analogues for children and adolescents with gender dysphoria. Download the full report from https://arms.nice.org.uk/resources/hub/1070905/attachment.

Transgender Identity and Experiences of Violence Victimization, Substance Use, Suicide Risk, and Sexual Risk Behaviors Among High School Students — 19 States and Large Urban School Districts, 2017 https://www.cdc.gov/mmwr/volumes/68/wr/mm6803a3.htm

Looking at … COVID Vaccine Black Markets & the Role of Tech

Screenshot of the HealthcareDiversion.org website with the highlighted text "Together We Can Stop Drug Diversion."
Healthcare Diversion: https://healthcarediversion.org/ | https://healthcarediversion.org/incidents/

Timeline View

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?

Mid-2020

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.

Late-2020

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.””

‘There absolutely will be a black market’: How the rich and privileged can skip the line for Covid-19 vaccines, by Olivia Goldhill and Nicholas St. Fleur (StatNews Dec. 3, 2020)

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.

December 2020

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.””

‘There absolutely will be a black market’: How the rich and privileged can skip the line for Covid-19 vaccines By Olivia Goldhill and Nicholas St. Fleur (Dec. 3, 2020) https://www.statnews.com/2020/12/03/how-rich-and-privileged-can-skip-the-line-for-covid19-vaccines/

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.”

Coveted COVID-19 Chinese vaccines provoke social media scams, scalpers targeting overseas Chinese. Global Times. https://www.globaltimes.cn/content/1209931.shtml

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.

GARCIA: (Laughter).

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.”

The Underground Market For Vaccines (December 17, 20205:47 PM ET) https://www.npr.org/2020/12/17/947734522/the-underground-market-for-vaccines | https://www.npr.org/transcripts/947734522

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.”

Be a smart health care consumer: COVID-19 Vaccine Scams. http://www.publichealth.lacounty.gov/media/Coronavirus/docs/about/COVIDVaccineScams.pdf

January 2021

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.”

A black market for illegal coronavirus vaccines is thriving in the Philippines (Jan. 17, 2021 at 6:29 p.m. EST) https://www.washingtonpost.com/world/asia_pacific/vaccine-coronavirus-chinese-workers-philippines/2021/01/16/e5126c88-4f09-11eb-a1f5-fdaf28cfca90_story.html

The Pfizer COVID vaccine had received emergency use authorization from the FDA December 18th, 2020, and then moved into distribution, with a media splash kickoff event of notables receiving the vaccine on December 21st. By early January, there were already reports in the news of vaccine inequities in delivery to schools, redirection of vaccine doses from retirement homes to wealthy folk, and hospitals’ big donors getting preference. Perhaps the saddest story was of an honored paramedic reportedly threatened by his boss if he didn’t steal vaccines for him.


“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.”

Polk County ‘Paramedic of the Year’ arrested in theft of COVID vaccines https://www.woodtv.com/covid-19-vaccine/polk-county-paramedic-of-the-year-arrested-in-theft-of-covid-vaccines/

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.

February 2021

In February, things broke loose, and the reports got wild. More public reports of cyber criminals identifying shipments to steal. Hackers attempting to steal formulas or other vaccine-related information to enable the production of fraudulent or counterfeit vaccines. Artificial intelligence used to identify healthcare providers or volunteers who redirected or misdirected or diverted vaccine resources, specifically through behavioral analytics. Meanwhile, behavioral analytics were already being used to try to encourage vaccine adoption. Cars stolen with vaccines inside. Vaccine appointment information falsified and the vaccines delivered to children who weren’t legally eligible. Vaccines thrown out accidentally as ‘extra’ dry ice. Scam registration sites harvesting people’s personal information and not delivering the expected vaccine. Heightened awareness of and push-back against concierge care in medicine because of perceived vaccine access inequities. Healthcare IT News had a great overview article collecting many of the tech issues and strategies around vaccine access and delivery.

“”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.”

Analytics: A weapon against the COVID-19 vaccine black market: Theft and fraud are becoming major patient safety issues – and experts say the patchwork nationwide approach to COVID-19 vaccine distribution could be making matters worse. By Kat Jercich (February 01, 2021 02:17 PM) https://www.healthcareitnews.com/news/analytics-weapon-against-covid-19-vaccine-black-market

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.”

EXPLAINER: Meet the vaccine appointment bots, and their foes: Having trouble booking a COVID-19 vaccine appointment online. By MATT O’BRIEN and CANDICE CHOI (February 25, 2021, 11:40 AM) https://abcnews.go.com/Health/wireStory/explainer-meet-vaccine-appointment-bots-foes-76111489

Then, naturally, there is also AI and increased security efforts to protect vaccine appointment systems against scalpers and related activities. Are you complaining about how hard it is to get an appointment? Some of those barriers and frustrations may be directly tied to efforts to protect vaccine appointments from being stolen by scalpers.

“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.”

FOCUS-Walgreens, CVS beef up protections against threat of ‘bot’ attacks on vaccine program. https://www.reuters.com/article/health-coronavirus-scalpers/focus-walgreens-cvs-beef-up-protections-against-threat-of-bot-attacks-on-vaccine-program-idUSL4N2KB3NE

Takeaways

  1. Tech is a double-edged sword that can be used for good or harm, and it isn’t always clear which is which.
  2. Be careful, stay safe, use trusted resources of information.
  3. Get vaccinated! But get vaccinated safely, appropriately, and without causing harm to yourself or anyone else.

And with that, I’m off to get my shot.

Other Sources & Snippets

COVID Vaccine Tracker https://www.nytimes.com/interactive/2020/science/coronavirus-vaccine-tracker.html

CDC’s VaccineFinder https://vaccinefinder.org/

Vaccines.gov: https://www.vaccines.gov/get-vaccinated/where


(un)Diagnosed: Day 365 (Twelve Months) Still Recovering, Not Recovered

Screenshot from RingFit shows a female avatar jogging down a scenic dirt path. On either side are grasses, flowers, and trees. Ahead are boulders and pillars.

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.

Neuro Rehab

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.