Friday, May 12, 2023

#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.

Thursday, May 12, 2022

ME Awareness Day 2022

ME/CFS AwarenessIt'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.

Wednesday, May 12, 2021

Long covid and silver linings

ME/CFS AwarenessME/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.

Tuesday, May 12, 2020

A temporary voyage in the same boat

2020 is shaping up to be an interesting year, huh.

I haven't updated this blog since last August, mostly because blogging doesn't seem like much of a thing anymore, but lately because nothing is happening. The band hasn't rehearsed since everyone was advised to go into hiding. We have no gigs. No one has any gigs in the traditional sense. We're not set up to perform virtually. Setting us up to perform virtually seems like something I ought to look into, but between paid work (which I thankfully still have because I've freelanced since 2011), caregiving duties, and attempting to obtain basic necessities without ever leaving the house because I live with someone who's immunocompromised, I'm stretched kind of thin as it is.

Are we having fun yet?
Me on the first errand that's required my physical presence since late March. I tilted the camera to symbolize the askew-ness of the world. This is literally as much creativity as I can manage right now.

So why the new post? I glanced at my computer clock to see what time it was and noticed the date: May 12. ME/CFS Awareness Day. The thing I blogged about even when I stopped blogging about everything else.

In the past I've explained what ME/CFS is. (tl;dr: It's a disease where you hurt all the time, feel really sick, experience crushing exhaustion, and often die long before you should). I've encouraged readers to kick in some money to discover a cure. I've talked about why raising awareness about the disease is important and linked to articles on what we're doing to raise it. This time I'm going to relate something somebody said during a meeting with local #MEAction members after the pandemic hit.

The meeting was virtual, of course, but we didn't teleconference because of coronavirus-related self-isolation. We teleconferenced because most of the members have ME/CFS and are too sick to leave the house. Instead of starting with official advocacy business, we took turns talking about how our lives were going in the midst of all the chaos. One woman said she was doing pretty okay, actually. Her entire life had already consisted of staying at home, shut away from the world. Now, at least temporarily, everyone else was in the same boat. She didn't want other people to suffer. She just enjoyed feeling, for once, like she wasn't the only person who couldn't go outside, couldn't contribute to society, couldn't partake in the normal activities that most of us take for granted.

That about sums up Awareness 2020 for me: knowing that what's been chipping away at so many people's mental health on a temporary basis is just life for people with ME/CFS, except that people with ME/CFS also have to deal with chronic pain and possibly dying young.

Oh, and research suggests that the surge in covid-19 cases could lead to a greater number of people who have chronic illnesses, including ME/CFS.

Stay safe, everyone. If you're healthy, it's good to become aware of what ME/CFS is by reading posts like these. You don't want to become aware by getting it yourself.

Thursday, August 8, 2019

Severe ME Day

May 12 was ME/CFS Awareness Day, which I failed to write about because I've been terrible about blogging this year. There were #MillionsMissing events all over the world to highlight how patients have been missing from their own lives because they suffer from a disease that makes them too sick to work, too sick to socialize, and in some cases, ultimately too sick to survive.

Tucson's #MillionsMissing event happened on Saturday, May 11, at Monterey Court.


Sonya Heller Ivey talked about her own experiences with the disease. She's recovered to the extent that she can occasionally leave the house, but she had to sit to speak.


Amber Frame organized the event for the second year in a row. She has a family member with the disease.


Mayor Jonathan Rothschild said a few words, also for the second year in a row.


And Cinder Bridge provided the tunes. (Thanks to Nancy Biggins for the photo.)

So that was ME/CFS Awareness day. Today is Severe ME Day, which honors the most severely affected people. Patients with severe ME often spend their days in darkened rooms so that they can't be hurt by light, sound, or touch. They may not be able to stand, dress themselves, bathe themselves ...

Severe ME Day is a good day to turn awareness into action and donate to the Open Medicine Foundation, whose mission is to find a cure, and #MEAction, which educates the population about the disease and advocates for individuals who have it.

Saturday, May 12, 2018

Together We Act 2018: A #MillionsMissing Event

For many years now, May 12 has informally been designated as awareness day for myalgic encephalomyelitis, aka "chronic fatigue syndrome," a devastating neuroimmune disease that involves debilitating pain, cognitive impairment, crushing exhaustion, and a host of other symptoms. As of this particular May 12, the date will officially become ME/CFS Awareness Day in Tucson, Arizona. Mayor Jonathan Rothschild will read the proclamation this afternoon during Together We Act, an event geared toward (obviously) promoting awareness, and also toward raising money for research into ME.

If you're in the Tucson area, you should come. The event is at Monterey Court (505 W. Miracle Mile), goes from 1 to 3 p.m. and features ...
  • Stand-up comics
  • The aforementioned proclamation by Mayor Rothschild
  • Music by Cinder Bridge (that's us!)

Yay! See you there.

Friday, May 12, 2017

ME/CFS Awareness Day 2017

ME/CFS AwarenessME/CFS is a chronic disease that involves debilitating pain, cognitive impairment, crushing exhaustion, and a host of 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, far too many people dismiss "chronic fatigue syndrome" as hypochondria or malingering. It's neither.

There is no cure. There isn't much in the way of treatment.

But there has been some progress of late.

Good research

The Open Medicine Foundation is conducting desperately needed research on the disease. In a study published in fall 2016, they found evidence that patients have a metabolic signature similar to animals in hibernation. You can donate to the OMF here.

Pushback on bad research

A deeply flawed study from a few years ago claimed that ME/CFS patients could be helped by exercising. They can't. Exercise is harmful to ME/CFS patients. The study gained traction despite complaints from sufferers who called out the study's obvious methodological problems. But within the past year, David Tuller published a series called Trial by Error that went into great (great great) detail about said methodological problems. The scientific community finally started paying attention. While the flawed paper hasn't been retracted yet, subsequent activity has forced the researchers to release the data so that others can examine it.

If you don't have time to read all of Trial by Error, this New York Times piece by David Tuller and Julie Rehmeyer will fill you in.

For more details on ME/CFS 101, try this handy FAQ.

And seriously, please donate to the Open Medicine Foundation.