Morning Ramble on Diagnoses, Fatigue, COVID Test Justice, #Cats4Laps4Cats, and more

transcript from Instagram Live video

This is a lightly edited transcript from this video on Instagram. Also, I am not a medical professional and have several different chronic conditions so my experiences cannot predict or guarantee what may happen for others.

[Image description: I’m a white person with messy brown no-longer-short-hair, looking to the left with my mouth open, talking. Photo is shaped like a phone screen and the text at the bottom says Morning ramble on diagnoses, fatigue, and more, above the view of part of my t-shirt. The white t-shirt says We Demand A Cure (and the part that can not be seen says Universal Health Care for the AIDS Crisis.)]]

Hey, y'all. Good morning. I'm here to check in. And especially for people who are dealing with chronic illness — including those who are new to chronic illness in this time of COVID and Long COVID, here’s about some thoughts about getting by.

It's a cold snowy morning here in Brooklyn. And I woke up with symptoms that I haven't had a long time, called a pseudo-exacerbation of a condition I have a diagnosis of, which is called NMO. I'm not going to go into that now.

But suffice it to say it's something where I haven't had flares for many years, but the flares can be very scary. Every once in a while I get symptoms that potentially could be from a flare and I need to think about what to do.

So that puts me in mind of many things about the Cranky Queer Guide to Chronic Illness this morning.

This one condition I have, it's pretty rare. Maybe I don't even have it because I lack one of the diagnostic criteria for it, although I qualify for the diagnosis in different ways.

[[Find the Instagram Live video here]]

Diagnoses

And I looked it up this morning and found out there's now new and likely super expensive drugs approved for it. There used to be no treatments approved for it [all the treatment that people used, and that I used in the past, were “off label”] but there’s now three treatments approved — all really intense immunosuppressive treatments that I probably don't qualify for, because I don't have this particular marker of the condition — an autoantibody.

To some extent, I’m atypical for all my chronic conditions. So that made me want to reach out and talk about what is a diagnosis, anyway.

Really, a diagnosis is about as abstract as you can get. In some cases, conditions’ diagnoses can be very definitive. But what it is, in some ways it's a bureaucratic step, it's a way of getting treatment, or it's a way to gain a certain kind of care. Because a diagnosis has a billing code, a diagnosis has indications, or can be an indication for access to a drug.

A diagnosis doesn't necessarily mean how we're going to feel day to day, it doesn't necessarily mean what the outcome is going to be or what the prognosis is.

So as we're learning more about Long COVID, and people are learning more about your own bodies and your own journey with this experience, some people may or may not get diagnoses.

In my case, I’ve gotten a lot of diagnoses over the years. Because, in part, I have private health insurance. And I know my way around the medical system as someone who's been an HIV activist for many years. And to clarify, for those of you who don't know me or my story that much, I'm not talking about COVID era… All my major diagnoses, well, the last major one I got of ME/CFS was something like, five years ago, I don't even remember anymore.

[[Find the Instagram Live video here]]

#Cats4Laps4Cats

But so, along the journey to a diagnosis… Oh here's Pickle! I want to digress for a moment to say that my cat Pickle is an activist who's involved with a group that's called #Cats4Laps4Cats.

Image description: A beautiful silver and black tabby cat looks at the camera, stretched out on the lap of a smiling, messy-haired white person in a red onesie who is sitting on a sofa. The person is holding a laptop computer on the palm of their hand because the cat owns their lap.

He wanted it to be called the Anti-Laptop Society. But the some of the members of the group wanted something that was more hashtag friendly, like #Cats4Laps4Cats. (My kid explained this to me.)

COVID Test Justice

Anyway. So. As you're on your way on your journey, diagnoses can be useful, right? Sometimes diagnoses are based (or partially based) on test results. And one thing we all need to fight for this:

As we move along and figure out what needs to happen for the best care of the millions of people who are finding themselves in a different health situation after getting through or still dealing with COVID, some things may be based on having a positive COVID test history. And this is a bad deal.

You know, like when I had COVID in March 2020, I followed medical advice, which was to not try and get a test. Test weren't around, there wasn't there was a shortage. It was the right thing for me to do — for myself and for society — to stay home and not try and seek out the test. Right.

Fortunately, I don't seem to have Long COVID or much Long COVID. But I also don't have a positive COVID test result.

So even if I were sick now from Long COVID, I wouldn't qualify for some of the very limited post-COVID care clinics that are requiring people to have a history of a positive COVID test.

Plus, you know who got sent home and told you don't need a COVID test, told you don't need to be in the hospital, you don't need care. Some of them are no longer with us because they were denied care that could have been lifesaving. And those who were able to get by and may be dealing with stuff now don't have a positive COVID test.

[[In the video I didn’t say this explicitly and didn’t realize I didn’t, so I will say here I am talking about Black and Brown people who face implicit and explicit bias and bureaucratic violence in medical institutions. Say Her Name: Dr. Susan Moore]]

We also know that in many cases early on, and still sometimes now, the tests aren't completely accurate.

And then moving on to antibody tests… I don't have antibodies, I got tested twice, including pretty soon after being sick, when they were first just making them available for people to see if you could be a plasma donor. It may have something to do with having all these autoimmune or immune-weirdness conditions I have that affect how my body may make or not make or hold on to or get rid of antibodies.

So when it comes to diagnosis, when it comes to criteria, we need to fight against the discriminatory mandate to have a positive COVID test.

Now people may say, “We need to be able to have research that clearly knows that people had COVID.”

No, actually you don't.

You can segment your data — you can take data on everybody, and then create separate categories to do a data analysis of those who happened to have had a positive COVID test, and those who didn't. If you reject people from your study, from your research, because of not having a positive COVID test, you actually may be putting bias into your study, because you're biasing inclusion of people who already had healthcare access, who may be more likely a private health insurance, or who live in an urban area, or even who got COVID during a particular season that this year rather than earlier on.

You're actually biasing against people who live in places that were or are politically controlled by people who have been politicized to think that this virus isn't real or isn't serious, or that they don't need to prioritize testing or health care access.

So we need to advocate for not having COVID test status, or having had COVID tests as an indicator or a barrier to care.

I have a letter that I'd like for you all to sign. It’s available at bit.ly/covidtestjustice, to oppose the use of COVID tests results as an entry way or a barrier to people getting care, support, or being a part of research or getting in Long COVID programs.

So now of course, there's also going to be over a period of time, the creation of different diagnoses of the different components of what makes up long COVID. Right.

And so know that this doesn't tell you what you are experiencing or not experiencing — because inevitably, a diagnosis is going to lead people out. Many of us may remember that the definition of AIDS…. You know, HIV is a virus but what is AIDS or what was AIDS? The definition originally left out some common opportunistic infections experienced by women and injection drug users!

So the saying was, “Women don't get AIDS, they just die from it.” Women don't get AIDS, they just die from it.

And people had to fight, led by women living with AIDS, some of whom didn't survive to see the victory of changing the definition.

And they knew — because they were living the experience — that the definition didn't tell them who they were or what they were experiencing. But the definition was a gateway — or a barrier — to services, to care, to research.

So we need to keep an eye on, and advocate for, inclusive definitions of various aspects of Long COVID.

What's more, though, is this:

If we create a system of care and treatment for people who are experiencing some aspects of Long COVID — for which the most common experiences are fatigue, problems with thinking, brain fog — then we what about the rest of us that have been experiencing brain challenges, who have been experiencing fatigue across many chronic conditions, particularly ME/CFS, but many other ones for many years?

Slicing us into different diagnoses doesn't address the overlapping symptoms and conditions that are experienced by many of us, and that could benefit from more comprehensive research and care and support — for things like fatigue, post-viral infection or post viral conditions that can lead to fatigue.

[[Find the Instagram Live video here]]

What to Try for Fatigue, Diagnosed or Otherwise

ME/CFS — myalgic encephalomyelitis, which is one of my diagnoses — may be a diagnosis that many people who experience these conditions six months or more after getting COVID may get… OR politically, economically, and structurally, it may end up getting called something else.

But what we all need is better research and treatment and coping, support for dealing with fatigue. We all need that.

So I'm going to tell you a couple things about that now.

First off, if you are experiencing Long COVID or experiencing challenges with fatigue and brain fog and other conditions, check out ME Action’s campaign for stop, rest pace, #StopRestPace. There's a systematic ways of looking at how to pace our activities that people have found helpful in regaining or extending your capacity to be able to function when dealing with fatigue.

So, #StopRestPace will connect you to some of these resources to look at how to do pacing. Now I know not everyone can do pacing and have, you know, the autonomy over how we spend our time or being able to do what we need to do when you're working when you're taking care of your families. Still, check it out and see if there's anything there for you and please share it with others.

Before this next part: as always, keep in mind:

I am not a medical care professional/provider, and this is not professional medical advice.

I have several different chronic conditions so my experiences cannot predict or guarantee what may happen for others.

I have been able to benefit from an anti-fatigue treatment that doctors don't seem to tell people about. It's called modafinil. It’s approved for people with narcolepsy, and was also approved for use for people who have shift-work-related fatigue. And I take half of a 100 mg pill every morning. It works differently than coffee. And it works differently than other stimulants I've tried. It seems to be something that, for me at least, works very clearly and sort of cleanly. And then it stops working and I start yawning. So usually, that morning dose of half of 100 milligram pill gets me through four to six hours of …. that sharpness that some people like with ADHD may experience when drinking coffee or other stimulants. I get that from the modafinil. Plus, I have some coffee and my chai tea in the morning.

I need to watch out because if I take a full pill, I may not get enough sleep. For me, when I take stimulants or coffee, it seems to affect me and them wears off and then it hits me again, like I may wake up in the middle of the night. [Also, as pointed out by a reader, stimulants could encourage people with ME/CFS to be more active and that could provoke post-exertion malaise (PEMS) and lead to crashing and ultimately progression of ME/CFS. So talk about it with your clinicians so they know you are taking this or considering it.]

So I always advise, if you're trying a new treatment that's something to be taken like “PRN”, meaning as needed (and it's not time released or extended release formulation), if you're pretty sensitive to medication or side effects like me, you could try taking a half dose. So if you're interested in modafinil, please see if you can get it prescribed from a provider. Your insurance is probably gonna say they won't pay for it. My different insurances through the years paid for it for like, I don't know, 10 or 15 years, then all of a sudden this year, they're not paying for it anymore. And I found out I can get it for $20 a month through Capsule, which is a delivery pharmacy that I can use via text. I still need that prescription from my provider, and I need new one every month because it's a controlled substance [but Capsule will reach out to the provider on my behalf, which is MUCH APPRECIATED by me]. But I can do $20 a month, you know, for something that helps me really be able to manage much better.

5 Kinds (AT LEAST) of Fatigue:

I wanted to also share that I just learned a couple months ago that there's research that validated there's about five different kinds of fatigue, that people with MECFS experience.

And I've been living with me probably for a really long time, much longer than the five years I’ve had the diagnosis. But no one ever talked to me about thinking about these different types of fatigue. And it was really helpful to me to have see this written out.

It was really validating, you know, and it helps me feel into the fatigue I'm having. I can better know, first of all, how to let myself off the hook, and talk to the voices inside of me that are gonna invalidate my experience. But also I can think about what to do, or what not to do, or just how to get to the next phase of when my fatigue may shape-shift, right?

For me, fatigue often has a queasy component, a dizziness that goes with it. Another one is sort of wired tired, just being actually amped up, but also so tired that it's very hard to function — yet there's this drive, sort of like a hollow drive, urging me to do things. I can't remember the other three but I'm going to look them up and send them out so people can see them.

[[OK, I looked this up afterwards and here’s one of the research studies, with this info:]]

Items were written for the following five hypothesized dimensions: Post-Exertional, Wired, Brain Fog, Energy, and Flu-Like fatigue. Post-Exertional fatigue was defined as abnormal exhaustion following a bout of physical activity (e.g., "Physically drained after mild activity"). Wired fatigue was considered an over stimulation of the mind or body without the available energy to act out the mental or physiological excited state (e.g., "Body feels over-stimulated when very tired"). Brain Fog fatigue constituted the exhaustion or interruption related to everyday cognitive processes, such as memory recall, speech, or information processing (e.g., "Thinking is hard work and muddy"). Energy fatigue was defined as a lack of energy resources needed for daily functioning (e.g., "Do not have energy to do anything"). Finally, Flu-Like fatigue was the tiredness that is associated with physical symptoms commonly seen in cases of influenza (e.g. "Flu-like symptoms, such as sinus pain, etc.").

So I've been thinking a lot about in the last couple months about getting to know my fatigue, sort of making friends with my fatigue rather than fighting against it. Sort of settling into it like sort of like a warm blanket. Hello icky, warm blanket. Again, it helps that I have a lot of autonomy around my time. Because when I can let go of expectations and not have to, you know, achieve, I can ask myself, “What is in this fatigue for me? Can I listen to what happens if I listened to this fatigue and go with it, settle into it?”

So, those are some of my thoughts today. Thank you to people who have joined, this is my first I think, Instagram Live, I did a Facebook Live a couple days ago too, and I'm going to transcribe them and see what's in them that's worth sharing in text.

But if you have other things that you want to ask me or talk about, or would like to see in the Cranky Career Guide to Chronic Illness [[HAAA the auto-transcribing called it Cranky Career, lollllll]] or if you're having experiences now with looking for or getting diagnoses, or seeing where they present opportunities or barriers for you, thoughts on coping with fatigue or any of that, please do share them with me.

Okay, so I got to write an executive summary for a report now. So I’ll finish drinking my coffee, and see you around.

[[Want to watch or share what you just read? Find my Instagram Live video here]]