dSavannah note: Liz Burlingame, like Elke (whose story I posted on Tuesday), participated in ME/CFS Advocacy Day 2021 on Tuesday, April 20, an event sponsored by Solve ME. Liz, along with many others, urged our elected officials to support funding and research of post-viral illnesses like ME/CFS and long COVID, specifically to put pressure on Congress to pass the COVID-19 Longhaulers Act.

She told me she wrote this essay because she’s been sick for 30 years, and it took a pandemic to make ME/CFS relevant. She doesn’t want the long-haulers to face the same stigma and alienation we have.

And that’s part of the raison d’etre for #MillionsMissing2021 – as #MEAction wrote in their Virtual Toolkit, “now, due to COVID-19, there will be #MillionsMore who will be joining the #MillionsMissing. [And] if you are wondering if you have have ME after COVID-19, you are not alone.”

I asked Liz if I could share her words as part of this year’s #MillionsMissing advocacy, and thankfully, she said yes.

Dear Long-Haulers: we’ve been here before

An increasing number of COVID-19 survivors are finding that even after they beat the virus, their health problems still persist. They face a potentially long recovery. The COVID-19 virus is new, but post-viral diseases like myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, have been known and neglected for decades. We’ve been here before.

Liz on an “okay” day. When I talked to her on Tuesday about this essay, she could barely keep her eyes open and was lying down. It’s one thing to deal with it every day, like I do, but it’s another – and so heartbreaking – to see someone else fighting these symptoms.

I am disabled with myalgic encephalomyelitis, or ME. When I was first diagnosed after a bout of the flu, the disease was called chronic fatigue syndrome. Today the same disease is called ME/CFS.

The CDC estimates that 1 – 2.5 million Americans suffer from ME/CFS, although many remain undiagnosed. Despite our numbers, people with ME/CFS have been systematically marginalized and ignored. The concern now is that COVID “long-haulers” will face similar disdain.

COVID long-haulers are reporting an array of symptoms that include profound fatigue, memory and cognitive problems, headaches, muscle aches, unrefreshing sleep and more. These symptoms have kept formerly healthy people totally debilitated for weeks or even months. Crucially, these symptoms mirror ME/CFS. But there is hope.

The profound fatigue reported by long-haulers is totally familiar to people with ME/CFS. It’s a condition called post-exertional malaise (PEM). PEM is the defining characteristic of ME/CFS. It means that when you exert yourself, you experience a physical shut-down and a worsening of your symptoms. Patients call this a “crash.”

Imagine that your body is a battery and it’s holding a charge of only 10%. That 10% has got to power your arms, legs and brain all day long. If you are exhausted by noon, that’s not your fault. It’s your body telling you that your 10% of power is gone. You are done for the day.

I suffered for years before a physician even used the term post-exertional malaise. It would have helped if someone had said the precise words sooner. The term validated my symptoms and provided me with a better vocabulary for describing my pain. It also lead me to find a patient community, and it was that patient community – not a doctor – that taught me how to cope.

There is no specific treatment for post-exertional malaise, but people with ME/CFS have learned how to pace themselves to help mitigate their symptoms. So instead of pushing yourself to get things done, no matter how you feel, the idea is to stay within your own “energy envelope.”

Whenever an activity, either mental or physical, becomes too taxing, you stop and lie down. Immediately. For long-haulers, pacing strategies provide a blueprint for how to navigate your recovery and heal.

My message to long-haulers who might be suffering from post-exertional malaise is to REST. Give yourself extra time to heal now. Early awareness is key. You cannot exercise away post-exertional malaise. Neither can you ignore it and hope it goes away. Old tropes like, “Move it or lose it” or “No pain, no gain” are not helpful. A doctor once said these exact words to me and I took him seriously. I exercised to the point of exhaustion and it caused irrevocable harm. Now when I leave the house it’s in a wheelchair.

If you are recovering from COVID-19 and feeling discouraged that your recovery is too slow, consider the possibility that you are suffering from post-exertional malaise. You are not crazy, or lazy or unmotivated. You are sick. Your physical battery is low. If you feel like you need to lie down, you might really need to lie down. Pay attention to your symptoms and give yourself extra time to heal. Such awareness increases the likelihood that you will fully recover.

Going back to bed now might feel like a defeat, but it could ultimately be the wisest thing to do.

Liz Burlingame is a person with ME/CFS and the state-chapter leader of #MEAction GA. (I’m also proud to call her my friend.) She has battled ME/CFS for 30 years.

Thank you, Liz, for sharing your thoughts, and taking time during your current crash to work with me on this.

One of the things I didn’t include in My Story that I published yesterday (of course, I’ve thought of many details I could add, but I won’t: if I start editing, I’ll never stop) is that I often wonder how different my health might be if I hadn’t pushed myself so hard. When I first started getting ill, and even as I got sicker, I kept working. Hard. I kept pushing. I kept trying. I pushed myself until it feels like I literally burned my body out.

To stop that from happening to anyone else, Liz asks that you visit #MEAction’s campaign to Stop. Rest. Pace, especially if you are one of the #MillionsMore.

If you are financially able, Liz has also requested that you donate to #MEAction, the advocacy organization that is spearheading the #MillionsMissing campaign this week. To help researchers find a biomarker and a cure, donate to SolveME and Open Medicine Foundation. (All donations are tax-deductible in the US.)

And most importantly: tell your Congress members you want them to support the COVID-19 Longhaulers Act (H.R.9027) by signing this letter created by Solve ME. It’s easy, and will only take a few moments of your time, but will make a world of difference for people, like me and Liz, who deal with these symptoms every minute of every day.

The timeline of actions from The #MEAction Network.
Today, Thursday, 5/13, is a day to Attend Local Events.
(All virtual, so you don’t even have to leave your bed! Or put on pants!)

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