Forensic catastrophizing

Plus, The Antidote #26: fading antibodies, something in the blood, climate disasters, and calming the nervous system by toning the vagus nerve

The Tonic is a lighthearted, heavily resourced newsletter for folks interested in learning about long COVID, ME/CFS, and other health conditions. Come for the info; stay for the whimsy. Or vice versa.

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Sherlock Google

I have to believe we’re all guilty of playing Dr. Google from time to time, typing in queries like “what does it mean when your (body part) turns (color)?” or “what disease does (slightly out of reference range test result) mean I have?”

I have trouble remembering just how frequently I did this kind of thing in the “before times,” though I’m 100% certain I’ve done it more since the ick than in all the years of my life prior.

As I’ve mentioned in previous posts, I am not one of those long haulers whose tests have all come back normal. Or, let me clarify. Most all of my routine tests (that all people get) come back normal, but my neuroimmune illness¹-literate doctors have known which tests to run that scratch farther beneath the surface (in one case, literally layers beneath the surface - a skin “punch” biopsy to confirm nerve damage - picture a hole puncher from your grade school days, and now picture it being used to punch a hole out of the tender skin on your ankle/foot and upper thigh - ouchy!).

Abnormal non-routine test results over these last 4.5 years have included things like reactivation of Epstein Barr Virus (for four years and counting), high leukotrienes measured in a 24-hour urine study, high serum tryptase (these last two can indicate mast cell activation syndrome), T-cell exhaustion, low lymphocytes, and the aforementioned punch biopsy which showed nerve damage, to name a few.

Over time, some of the routine tests started coming back wonky too: elevated A1C (pre-diabetes), high total cholesterol, high LDL, and most recently, extremely low ferritin. My infectious disease doctor confirmed for me that a lot of this metabolic dysfunction was happening to long haulers around the two-year mark. Still, I never had diabetes medication and a statin on my 40’s bingo card.

Many of you with long COVID and ME/CFS (and maybe other illnesses too) can relate to the catastrophizing you start doing when you learn about what some of these test results might lead to. The big one (in my mind) is the reactivated EBV, which a fairly recent study showed could make people 32 times more likely to develop multiple sclerosis. Not everyone who has had EBV will go on to develop MS, but virtually everyone who has MS has EBV in their system. EBV in rare instances can also cause certain cancers, such as Burkitt lymphoma or nasopharyngeal cancer.

In addition to catastrophizing over test results, many of us have at one time or another legitimately thought we were dying. Most of us had never experienced such bizarre and severe symptoms in our lives - symptoms that sound like they’re straight from science fiction:

• fatigue (a terribly inadequate word) that feels like there are concrete blocks holding us down on the couch or bed, or that we’re dragging like zombies to the bathroom or kitchen,

• muddy cognition that makes us feel supremely slow and dumb,

• cold/tingling/burning/buzzing/bubbling sensations in our limbs or veins,

• GI problems not suitable for discussion in polite company, that leave us feeling like aliens have taken over our gut,

• peeling skin, as if we are molting like snakes.

(In addition to the above, I have had purple blood spots under certain fingernails for over four years now, and no expert I’ve seen can tell me what it is or what’s causing it).

Catastrophizing is rarely a helpful thought pattern, but many of us find ourselves doing it readily and unwittingly. It’s born of course out of intense fear and anxiety, which are both understandable when you combine the symptoms above with the fact that ours is a novel illness whose etiology has yet to be determined. The unknown can be extremely frightening. So far, no one has lived more than five years with long COVID.

Read that sentence again. It sounds so dire, right? See what our brains are capable of? It also just happens to be fact, since that’s how long we’ve known about SARS-CoV-2. It needn’t be so scary, not necessarily. Except we don’t know if having this illness is going to lead to other serious illnesses or shorten our lifespan in some way. The fear that you’ll usually find when you pull the thread of catastrophizing is, “will this kill me or lead to my death, and will it be a horrific, painful one?”

To take this a step further, there’s Dr. Google and then there’s Sherlock Google, or what I have newly coined “forensic catastrophizing.” It goes well beyond typing in a symptom or a test result and seeing what Google spits back at you, though it can certainly start with that (I do have a long hauler friend who was prone to catastrophizing but in a more Google-avoidant way; it’s important to acknowledge that this form of catastrophizing, based solely on these novel and awful symptoms making one feel that something is terribly wrong, also exists).

For me, forensic catastrophizing has involved endless investigatory rabbit holes over these last several years, seeing what’s consistent across said holes, and connecting dots back to me and my sci-fi symptoms or test results that triangulate precisely to the catastrophic event I become convinced is in my future (usually: CANCER).

Here’s a recent, kind of mild example: as I mentioned earlier, my serum ferritin came back low at a 7 (the low end of normal for women is 16). I’ve been losing a ton of hair for the past two months. My right pinky fingernail is separating from the nail bed and is getting worse each week. Google tells me from all of this that I could be anemic. It also pointed me to a paper which said that absolute iron deficiency happens at levels of 30 or below.

Of course, being anemic can contribute to feelings of chronic fatigue, and no one wants more of that (or, it begs a chicken or the egg question - is my long COVID maybe getting better, but my fatigue persists because of a newly identified anemia?).

But to take it even further, some of my lymphocytes are low, as I discovered at my immunologist a few months back. My red blood cell counts have been on the low end of normal for a few years now. My mother died of lymphoma. My own T-cell exhaustion and EBV reactivation could also lead to cancers, particularly lymphoma.

Can you just feel the dots connecting?

My primary care physician is out on maternity leave, so I sought out a hematologist to try to help me unpack the issue with my low ferritin (and perhaps by extension, any catastrophizing I may be doing). I’ll be seeing him next week. Stay tuned.

In the meantime, I would say that for the past year to year-and-a-half, I’ve actively been working on addressing my unhelpful thought patterns, and this includes my catastrophizing and the related forensics. While the science nerd in me is always curious what something could mean, over time I’ve been able to take the “heat” out of the feeling that I’m going to die any day now. I have become better at catching these thoughts when they start and intentionally interrupting them or else gently swatting them away, a figurative hand waving back and forth in my brain like it’s dismissing a gnat.

And although I’m not perfect at it, it’s definitely working. My level of panic with each new “thing” has gone way down, and in turn I’m avoiding activating my nervous system unnecessarily. I can start to have the thought and then recognize that thoughts are not always true, or I can say a ‘devil’s advocate’ statement to myself, which helps keep me calm.

For example, my devil’s advocate statement around EBV causing MS goes something like this: “95% of people have EBV in their system, and yet only one million people in the U.S. have a diagnosis of MS, so it is still extremely unlikely that it’ll happen to you.”

A few other things that have helped me:

1. Dan Buglio’s YouTube page, Pain Free You. Many of his free daily videos are about how treating your catastrophic or fearful thoughts with indifference or a feeling of being unbothered can dial them down and that this can help calm the nervous system and turn down symptom levels. Here are a few relevant ones:

   1. Why Predicting the Worst Is a Horrible Strategy

   2. Going From Catastrophic to Optimistic

   3. 11 Things to Stop Doing

2. Raelan Agle’s YouTube page. Her interviews with folks who have recovered from both long COVID and ME/CFS have helped me understand that although catastrophizing may be a normal part of the illness experience, it can be counteracted by feelings of hope. Here is a trailer video to introduce you to her channel.

3. Alex Howard’s RESET Program, like many other brain retraining or nervous system reset programs, helps walk you through the skills of interrupting unhelpful thought patterns as a way to form new, more helpful neural connections which are inherently calming and restorative.

None of these resources have been a magic recovery potion for me, as I’ve discussed previously in my recovery tools series. But they have helped me loosen the grip on catastrophic thinking and fear, and I’m much happier for it. I’d say my nervous system has also evened out quite a bit as well, and that’s been the single biggest factor in my overall recovery.

I’d love to hear from you. Have forensic or garden-variety catastrophizing plagued you at any point in your health or illness journey? Over time, has that gotten better, worse, or stayed the same?

Onto the links…

The Antidote #26

COVID, Long COVID, and ME/CFS

💉 Why protective antibodies fade after COVID-19 vaccines

🌏 Long Covid is a significant health crisis in China too: read about it here.

💊 Off-label drugs for Long COVID patients (may require a STAT subscription).

🩸 Is something in the blood causing ME/CFS, long COVID, and fibromyalgia? Check out this Health Rising blog to learn more.

🎢 Metabolic Dysfunction in ME/CFS and long COVID: read more here.

🚸 Long COVID Is Harming Too Many Kids: read more here.

👩🏽‍👧🏾‍👦🏽 Sticking with kids: Excess Deaths Highest Among Younger Minorities During COVID Pandemic and Obesity May Raise Risk of Long COVID in Youth (both require a free MedPage Today account).

👶🏻 Fertility and COVID-19: Why aren’t public health officials telling us about the risks?

➡️ Study recruitment: City University of New York scientists are working on cutting-edge, multi-pathogen rapid tests for Covid-19, RSV, and influenza (with flu a and b subtyping) and they’re recruiting participants who will complete surveys and have access to free rapid at-home tests. Find out more in this short video and email recruitprotects@sph.cuny.edu for more information.

🗣️ Have you heard of ‘parts work’ therapy? It is used often in long COVID and ME/CFS recovery programs and coaching. I have been accessing it myself with my own therapist, who has ME/CFS herself. Learn more about it here.

👨🏻‍⚕️ Long COVID Competent Providers: here is a list for the U.S. You can also add to it and help out other people where you live.

😶‍🌫️ Brain fog: check out this Substack post by

Living with Long Covid

called When Your Brain Becomes a Stranger.

⛑️ Long Covid First Aid Kit: a great post (with an audio voiceover) by

Lesa Schultz

. Check it out here.

😷 Masking: the commonsense reason why the legendary Stevie Nicks still does it.

thesicktimes

A post shared by @thesicktimes

Webinars/conferences/podcasts/videos

👩🏽‍💻 RECOVER seminar: a panel discussion titled, "Vaccine response and time to recovery from COVID-19 in a multi-cohort collaborative (C4R).” Tuesday, November 12th from 12:00 - 1:30 PM ET. Register here.

🧘🏽‍♀️ Join my favorite yoga teacher Shannon of Nourish Therapeutic Yoga for a free, very modified movement class hosted by #MEAction on November 15th at 2pm ET. If you’ve been wanting to check out if Shannon or this type of movement is right for you, now’s your chance. More information and registration here.

🔮 Demystifying Long COVID International Conference 2024: November 21-22nd in Barcelona. Registration is free for Long COVID patients attending virtually.

🫀 CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call: December 4th at 3pm ET (Zoom or call-in). Includes CDC updates as well as “A Primer on POTS” with Satish Raj, MD. More info here.

Health miscellany

⚠️ RECALLS: Meat and poultry, International Delights coffee creamers, and duloxetine (Cymbalta).

💓 Pulse oximeters and racial bias: why the FDA’s promised guidance is unlikely to end discrimination.

🫥 Dementia: Millions of Aging Americans Are Facing Dementia by Themselves

⛈️ Climate disasters and mental health: Stress from Hurricane Milton and Helene taking toll on mental health in Florida and How to recover when a climate disaster destroys your city.

🐈‍⬛ Black plastic spatulas: if you can’t read this article, take it from me and throw them all away (and not in the recycling bin). They are filled with flame retardant chemicals and those are leaching into your food every time they are heated. The article doesn’t suggest alternatives, but I’ve taken to Google and it seems that stainless steel or silicone are the best bets.

⚕️ Few Teens Regret Gender-Affirming Medical Care, Survey Shows (free MedPage Today account required). Also, check this out: a master class in debunking fictions and fallacies about trans people.

🌍 Palestinian health crisis: read more in It’s Not Just the Bombs That Could Kill Us in Gaza.

🍇 Your diet can change your immune system — here’s how.

💗 Blood pressure checks: certain arm positions may lead to inaccurate results.

👂🏽 Therapists Share the One Tip That's Changed Their Lives.

💊 Supplements you shouldn’t take together.

♀️ Female Genital Mutilation Happens in America, Too (free MedPage Today account required).

🫸🏼 Denying health coverage: read about EviCore, the company helping insurers save money.

😵‍💫 Adults with ADHD: more and more are being diagnosed in adulthood, according to this report.

🍎 The healthiest fruit may surprise you.

🧘🏾 Vagus nerve: the key to calming your nervous system that most long haulers are intimately familiar with (and has been one of the keys to my own recovery). Everyone sick or healthy can benefit from this primer by

Ryan McCormick, M.D.

Now stick around for…

🥳 The After-party 🥳

Added resources, joy, tomfoolery, and buffoonery

🌲 Trees! Check out the UK’s tree of the year. Magnificent!

🦅 Sticking with nature, check out 18 photos from the 2024 Wildlife Photographer of the Year.

🥰 Heartwarming: NICU nurse returns to the unit that saved her life.

💗 More heartwarming: Woman, 22, Says 73-Year-Old Australian Man Is 'Best Housemate' She’s Ever Had.

🫂 How long is an effective hug? Apparently five to ten second.

🥯 Ever had a NYC bagel? They are the undisputed champs of the bagel world. Here’s a list of the best bagels in New York City. (I see a

CAFÉ ANNE

adventure on this! Also, check out

Michael Estrin

and his hot take on the alleged best West Coast bagel).

🎶 DEVO did a Tiny Desk Concert? YES! It was sheer delight and there was blessedly no “Whip It!” to be found:

🤦🏻 Buffoon of the week: the Delta flight attendant who pulled Catherine Banks, a Marine Corps veteran, off a flight for wearing a t-shirt that raised awareness of veteran suicide.

The flight attendant claimed the shirt’s message was “threatening” and Banks was asked to change the shirt before re-boarding the plane. She was then made to sit in the back of the plane after having paid for a seat up front with extra legroom, and because the flight was delayed, she missed her connecting flight. In the words of Banks: "I feel like they just took my soul away. I'm not a bad person, and that T-shirt, I should be allowed to support myself and veterans.” (A Delta spokesperson has said that the matter has been resolved and I hope Ms. Banks feels compensated appropriately for this shameful situation).

🏆 Winner of the week: this week it’s Gita, the very good girl who stood in the road near the woods and led police to where her 84yo owner had fallen and broken his hip. Man’s best friend indeed!

🐈‍⬛ 💩 And finally, it’s this week’s Cat Dump. Birdie can’t hold a candle to Gita, but her changing sleep positions were melting my heart.

I wish you could reach through these pics and feel her fur. It is the softest in all the land.

Like anything you saw here? Let me know in the comments! Subscribe! Click on the heart and ‘like’ it! Share it! Do something, FFS! 😅

**Disclaimer: Although I AM licensed to drive and to practice social work, I am NOT a licensed medical professional. You should not rely on any information contained in this newsletter in making medical, health-related or other decisions. Please consult a doctor or other health professional.

1. I use the term neuroimmune illness instead of “post-viral illness” because sometimes ME/CFS is not caused by a virus but by trauma, stress, extreme exhaustion, or some combination the three.