World ME Day

Today, in addition to being Mother's Day, is World ME Day, aka ME/CFS Awareness Day. I celebrated, if you can call it that, by donating to the Open Medicine Foundation. The OMF funds research on ME/CFS, long covid, and other diseases that can cause pain, crushing exhaustion, and the general derailment of your life.

At the end of the online donation form is an optional Additional Information field. "To help OMF communicate effectively with you," it says, "please identify your connection. Options include things like Patient, Family Member, and Caregiver. For the first time, I checked Healthy Ally instead of Caregiver. Felt weird. I honestly hated being a caregiver (although that's not the reason the person I used to care for doesn't live with me anymore), and I'm happy to have gotten my life back. But it sucks that people stuck with this disease can't also just opt out.

So, my contribution these days has been to kick a little money in the direction of the OMF. And to ask other people to do the same.

Please give. Even a dollar will help.

#MillionsMissing 2023

It's May 12, which means it's ME/CFS Awareness Day, #MillionsMissing Day, and time for my now-yearly blog post.

(If you've somehow reached this page without knowing what ME/CFS is, go here.)

The last time Ron and I performed was for a #MillionsMissing event in 2019. After that, the pandemic happened and everybody isolated. These days, most people are acting like it's over, but I'm currently living with somebody who's immunocompromised and thus still keeping semi-isolated. We haven't rehearsed since February 2020.

What I've given up is likely temporary, and it's just a fraction of what people with ME and long covid have lost.

I'm tired, and I'm a little sad, and I hope we're all in a better place by next year.

ME Awareness Day 2022

It's that time again. I honestly wasn't sure if it was worthwhile to do another post about ME Awareness Day. It's hard to say anything new after writing these for 13 years, and nobody really reads blogs anymore. I posted something about this last night in a private Facebook group, and one of the members responded, "What's ME?"

Okay, okay, I guess we're doing this. Since I don't have anything new to say, let's get back to the basics, starting with an answer to that guy's question.

What's ME?

A disease. "ME" stands for myalgic encephalomyelitis. It's more commonly known as "chronic fatigue syndrome."

Oh, chronic fatigue syndrome! Yeah, I've heard of that. I don't get what the big deal is, though. I get tired too.

ME isn't just being tired. Symptoms vary from person to person, but commonly include:

• Chronic, debilitating pain
• Post-exertional neuroimmune exhaustion—symptoms get worse after physical or mental exertion and require an extended recovery period
• Greater susceptibility to fatal cancers and heart failure
• Flu-like symptoms, such as joint and muscle pain
• Cognitive impairment, including problems with short-term memory
• Crushing fatigue, which is not relieved by rest
• Other common symptoms include cardiac arrhythmias, chemical sensitivities, food sensitivities, blurry vision, eye pain, irritable bowel syndrome, and a host of other conditions that are nasty in their own right

Huh. Some of that sounds kind of like long covid.

Yeppers. They're both post-viral syndromes, and while long covid has some symptoms not present in ME (loss of smell, "covid toes"), there's quite a bit of overlap. The ME community was predicting that long covid would become a thing before there were any documented cases. Please, please, if you're not someone who has bad reactions to vaccines generally, PLEASE get vaccinated. Vaccination doesn't guarantee that you won't get infected, but it does reduce the odds that you'll die, be hospitalized, or contract long covid.

A friend of mine says she has this thing, but every time I see her, she seems fine. I think she's a hypochondriac.

Probably not. It's typical for sufferers to have good days and bad days (though a "good day" can still be pretty awful from a healthy person's perspective). If you see someone with ME out and about, you've probably caught them on a good day. You don't see them lying flat on their back for the rest of the week, in the privacy of their own home, recovering from their trip to the grocery store.

Maybe they just need more exercise.

Exercise is extremely dangerous for people with ME. If they push themselves too hard, they'll make themselves worse—possibly much worse—not better. Also, if you barely had enough energy to feed yourself each day, would you waste it on push-ups?

If it's not psychological, and it's not due to lack of exercise, then what causes ME?

Probably a combination of genetic and environmental factors, but nobody knows the specifics.

Is there a cure?

No.

Any hope for a cure sometime soon?

Hard to say. More research is needed. Problem is, this disease still gets inadequate funding, largely due to the perception that it's not a real thing. Much of what it has gotten has gone toward questionable psychological research.

That's messed up.

Yeah.

What about treatments?

There have been a few advancements on this front in recent years, though no one-size-fits-all therapy. Some people have benefited from tethered cord surgery. Evidence suggests that some patients might benefit from a low dose of the dopamine-modulating drug aripiprazole, although further research is needed.

Is there anything I can do to help?

Yes! The most important thing right now is funding. We need more research to find out what causes ME and, eventually, discover effective treatments. Donate to the Open Medicine Foundation to help this along.

Cool. Anything else I can do?

Absolutely there is. Here are just a few things.

• If you know someone with ME, don't automatically assume they should get psychiatric help or suck it up because you "feel tired too sometimes." If this person wasn't a neurotic pathological liar before getting sick, it's unlikely they've suddenly turned into one. (Same goes for people with Lyme disease, fibromyalgia, multiple chemical sensitivities, and other invisible illnesses.)
• Participate in #MillionsMissing.
• Accompany the sufferer in your life to doctors' appointments. This serves two purposes. First, if you know enough about the person's symptoms, you can remind them of questions they wanted to ask if they're fogged and forget. Second, doctors who don't acknowledge the reality of ME tend to display better manners when there's a healthy witness present. I'm not sure why this is. Maybe rude doctors don't feel they can bully healthy people as easily; maybe the healthy person's belief in the sick person's illness lends it more credibility. In any case, it works.
• Quit calling it "chronic fatigue syndrome." Before someone invented that name, it was called myalgic encephalomyelitis. Refer to it as ME and the response will likely be "What's that?" rather than "Whatever, I get tired too."
• If someone else calls it chronic fatigue syndrome, correct them without being annoyingly self-righteous about it. For instance, "It was called myalgic encephalomyelitis until 1988, when the insurance lobbyists got involved."
• If you have trouble pronouncing myalgic encephalomyelitis (my-AL-jik en-SEH-fa-lo-my-el-I-tis), just say ME.
• Share Everybody Knows About Me, our song about living with undiagnosed ME.
• If you're a creative type yourself, create something of your own—a song, a painting, an essay—that helps people understand. Sometimes it's easier to communicate through art than facts, regardless of how true and compelling the facts are.

Long covid and silver linings

ME/CFS has been in the news a lot this year.

In case you're unfamiliar, ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) is a chronic disease that involves debilitating pain, cognitive impairment, crushing exhaustion, and many other nasty symptoms. Sufferers also experience post-exertional morbidity, which means they feel worse following even light exertion and require an extended recovery period. Many people with ME/CFS are housebound or bedbound.

Despite the severity of the disease, it isn't on most people's radar the way, say, breast cancer or multiple sclerosis are. At least not until recently, when a pandemic struck and some of the people who got sick never got better. Long covid, they call it. It bears some similarity to ME/CFS.

Living through the pandemic—for those of us who've survived it—has absolutely sucked. Nothing will compensate for the lives lost, or the lives devestated by the version of covid-19 that doesn't go away. But if we can find a silver lining in the increased funding for research on postviral syndromes, I will take it.

In the meantime, happy ME/CFS Awareness Day.

ME/CFS Awareness Day 2016

Today is ME/CFS Awareness Day!

If you're new to this band blog and you've never heard me sound off on ME/CFS, you may be thinking, "What is ME/CFS, and why should I be aware of it?" I'll answer that question and others in a handy FAQ format.

What's ME/CFS?

The "ME" part stands for myalgic encephalomyelitis. The "CFS" part stands for chronic fatigue syndrome.

Oh, chronic fatigue syndrome! Yeah, I've heard of that. I don't get what the big deal is, though. I get tired too.

ME/CFS isn't just being tired. Symptoms vary from person to person, but commonly include:

• chronic, debilitating pain
• post-exertional morbidity—symptoms get worse after physical or mental exertion and require an extended recovery period
• flu-like symptoms, such as joint and muscle pain
• cognitive impairment, including problems with short-term memory
• crushing exhaustion, which is not relieved by rest
• Other common symptoms include cardiac arrhythmias, chemical sensitivities, food sensitivities, blurry vision, eye pain, irritable bowel syndrome, and a host of other conditions that are nasty in their own right.

A friend of mine says she has this thing, but every time I see her, she seems fine. I think she's just a hypochondriac.

Probably not. It's typical for sufferers to have good days and bad days (though a "good day" can still be pretty bad from a healthy person's perspective). If you see someone with ME/CFS out and about, you've probably caught them on a good day. You don't see them lying flat on their back for the rest of the week, in the privacy of their own home, recovering from their trip to the grocery store.

Is there a cure?

No.

Any hope for a cure sometime soon?

Hard to say. The Open Medicine Foundation is working to discover biomarkers and effective treatments, but this disease gets very little funding. And despite the considerable evidence that ME/CFS is biological in origin, much of the funding it does get goes toward questionable psychiatric research.

That's messed up. I wish there were some way I could help.

You can help in more ways than you know. Here are a few ideas:

• Donate to the Open Medicine Foundation, an organization whose primary purpose is finding a cure for ME/CFS.
• Wear your underwear on the outside of your clothes. (It's a fundraising thing, like the ALS Ice Bucket Challenge.)
• Join #MillionsMissing on May 25 to protest the lack of funding for ME/CFS research.
• If you're too sick or too far away to make it to any of the #MillionsMissing physical protest sites, get involved with the virtual protest.
• If you have a friend with ME/CFS, make an effort to keep in touch. Your friend may not have the energy to call you, but he or she would probably love to hear from you.
• If someone you know makes a comment about how chronic fatigue syndrome is just laziness, don't let it pass. Explain that ME/CFS involves serious pain and real impairment, not just greater-than-average tiredness.

Hey, you said this was a band blog. How'd you end up doing ME/CFS advocacy? Seems kinda random.

Same way anyone ends up doing disease-related advocacy: I know someone who has the disease. He had an amazing career and a great life. Now he lies in bed all day, in pain, unable to do any of the things he loved. It sucks. There aren't words to convey how much it sucks.

But being a songwriter, I wrote a song about it. "Everybody Knows About Me" is told from the perspective of someone who lives with the disease ... and other people's prejudices.

So that's something else you can do:

• Send "Everybody Knows About Me" to anyone who might benefit. That includes people who have the disease and people who don't understand it. You can stream it on our website or download it for free on this page (top of the sidebar). Once you've obtained it, make as many copies as you like and send it to as many people as you like.

Thanks for listening.

Recorded at the River's Edge

Maybe you couldn't make it to our Breakfast Club gig at the River's Edge a couple weeks ago ...

And maybe you missed the live webcast of said gig ...

Good news! The webcast has been archived, and you can watch/listen to the entire thing at your convenience (with a few ads thrown in).

[UPDATE: Turns out these videos don't work in Internet Explorer. If all you see are black squares where the video is supposed to be, try viewing from another browser. Firefox and Chrome work.]

Here's our first set. If you do ME/CFS advocacy, check out 27:20, where we announce "Everybody Knows About Me."

Video streaming by Ustream

An 11-minute interview with Carolyn "Trouble" Cary.

Video streaming by Ustream

Our second set. Due to technical difficulties, the video stalls a lot during the first song and the beginning of the second, but everything works after that.

Video streaming by Ustream

Why I became an ME/CFS advocate

Many years ago, it occurred to me to wonder how celebrities choose their causes. If I were famous, I'd want to use my fame to make positive changes in the world—of course I would—but how to prioritize?

AIDS was the big issue in those days. AIDS would be a great option. But was AIDS more important than child abuse? Was child abuse more important than people starving to death in third-world countries? What about political prisoners? How about Alzheimer's disease?

In the end, I came to the conclusion that the cause probably chooses you. Your sister or your best friend is diagnosed with breast cancer, and you make it your mission to raise funding for a cure so your sister or your best friend survives, and nobody else has to go through what she's going through.

The personal connection is a big part of how I got into advocacy for ME/CFS. Someone important to me had this disease. I wanted him not to. Pretty simple.

Pretty simple, but not the whole story.

* * *

The other day, a friend of mine e-mailed me a link to an article about ME/CFS research. An excerpt:

Patients struggling with chronic fatigue syndrome may be helped the most when standard treatment is coupled with cognitive behavior therapy or exercise therapy, new British research suggests.

The apparent promise of cognitive behavior therapy and "graded exercise therapy" offers considerable hope to patients combating the complex condition characterized by profound tiredness, impaired concentration, diminished memory, sleep difficulties and muscle and joint pain, the study authors said.

The findings also support the somewhat controversial notion that incremental adjustments in physical behavior and/or mental attitude can ultimately have a positive impact on the disorder, the authors said.

Full article here.

The friend who sent the link knew I was interested in ME/CFS and wanted to know what I thought. I wrote a fairly pointed response, explaining everything that was wrong with the study.

"What's the problem?" I hear you cry. "They found treatments that help ME/CFS patients. Isn't that a good thing?"

It would be, if they actually helped.

The truth is, there have been many such studies on cognitive behavioral therapy (CBT) and graded exercise therapy (GET). They are fatally flawed in the following ways:

1. The cohort problem

Myalgic encephalomyelitis is a neuroimmune disease characterized by chronic pain, crushing exhaustion, and post-exertional malaise (symptoms worsen with exertion, sometimes permanently). However, the definition for the disease called "chronic fatigue syndrome" has been broadened to include people who do not necessarily suffer from pain or post-exertional malaise—people who have some completely different disease that causes fatigue, or clinical depression.

So a study on this "chronic fatigue syndrome" patient population is going to have problems right out of the gate. It's like testing a hypothesis that chemotherapy can help diabetics, and including a bunch of subjects who have cancer instead of diabetes.

2. Sampling bias

Say you've got ME/CFS. You often have to decide whether to spend your tiny allotment of energy on a shower or making yourself something to eat. One day you hear about a study. If you become a subject, they'll require you to exercise. If you exercise, you won't have enough energy for the shower OR the food.

Do you participate?

Neither would I.

So it isn't simply that they've included subjects who don't have ME/CFS. They've actually set it up so that the real sufferers are less likely to be involved.

For more thoughts on the most recent CBT/GET nonsense, along with observations from a patient who participated, read CBT & GET: The Studies, the Science and the Pseudoscience.

* * *

Bogus studies like the one above? They are why I've become an ME/CFS advocate. For other medical causes, raising awareness means spreading accurate information. For denigrated diseases like ME/CFS, raising awareness means constantly fighting the entities doing their best to lower awareness. You have to explain over and over again how positive thinking doesn't help, exercise hurts, and the disease isn't just in people's heads.

The cause chose me.

The cause needs all the help it can get.

Day of Visibility

I saw Avatar back when it was in theaters. It's not the kind of movie I usually go out of my way to watch, but I wanted to find out what the fuss was about.

Essentially it was just a big dumb fun popcorn flick, not nearly as profound as it was trying to be. Still, one line caught my attention.

"I see you."

This was a phrase used by the Na'vi, the big blue alien characters. It carried a world of meaning. I see you. I acknowledge your existence. You are just as important as any creature that has ever lived.

I wished the entire movie had been better, to be worthy of that one sentiment.

* * *

Today, June 6, was Day of Visibility for Invisible Diseases.

A disease is called invisible when it isn't readily obvious that the people who have it are sick. Nobody sees them when they feel their worst because they're too ill to go anywhere. When they have a good day, good enough to venture out into the world, they don't look sick and everyone assumes they must be fine.

And when sufferers claim they are NOT fine? The healthy people in their lives often assume they must just want attention and sympathy.

Many people with ME/CFS, fibromyalgia, chronic Lyme, POTS, MCS, and other diseases learn to keep quiet. Day of Visibility gives them a chance to come out of the closet, knowing that fellow sufferers are also putting themselves on the line.

I hope that a lot of sick people took the opportunity.

I hope that when they did, their friends and family said, "I see you."

24 years

Over the past few weeks, we've been sending out links to the ME/CFS Phoenix Rising Video. Over the past few weeks, we've gotten some very powerful responses.

This is my favorite so far.

A friend of Ron the Drummer's found the video touching and educational. He had heard of "chronic fatigue syndrome," the name most commonly given to the disease on this little corner of the planet. But because he didn't know anyone who had it, he'd never considered how horrible it must be to live with.

He thought the video and its message were worth passing on. He sent the link to several people he knew, including a cousin he occasionally corresponded with in e-mail.

Turns out, unbeknownst to Ron's friend, the cousin had been living with ME/CFS for 24 years.

Wow. Just ... wow.

Granted, the guy hadn't seen his cousin since before he got sick. Many factors conspire to make ME/CFS an invisible illness even when long distance isn't involved. And they may not have had any serious conversations over e-mail. Still, 24 years? You'd think in 24 years, the cousin would have mentioned something so big just in passing.

But then, I'm coming at this from the perspective of a healthy person. Later on I relayed the story to the person who inspired "Everybody Knows About Me," the song used in the video. His reaction? "That doesn't surprise me. It doesn't surprise me a bit."

There are a lot of reasons the cousin might have chosen to keep that bit of information to himself. Maybe the people around him had been unsympathetic, even derisive. Maybe he was tired of defending himself. Maybe, with so little energy left over for basic necessities, he didn't want to waste it trying to explain things to people who might not understand.

24 years of silence—broken because of a six-minute music video.

KXCI: Broadcasting awareness

Big shoutout to 91.3 KXCI for doing its bit for the ME/CFS cause. At 3:30 today, DJ Cathy Rivers said a few words about ME/CFS Awareness Month, then played Everybody Knows About Me.

This is exactly why we need to support community radio.