pwme

One of my closest friends just checked in because she knew there were still more tripwires with UW Medicine today--phone calls and MyChart messages that seemed specifically designed to go in circles--and because she has lived her own version of this story, she knows firsthand it's grueling.

So, she said to text her my grocery list tomorrow and that she'll pick up everything when she's running errands.

This is basically Nobel-level friendship--seriously, why no prizes for stuff like this?--and I love her so freaking much.

My physicians seems to have no clue whatsoever that living with Myalgic Encephalomyelitis, thyroid cancer, ongoing radiation complications, severe Orthostatic Intolerance, and the aftermath of a small heart attack can be dicey most days. They're obtuse in a way that'd be awe-inspiring if it weren't so dangerous.

But I still have many loved ones who do, in fact, get it--my mom checked in today, too--and I'm deeply, unendingly grateful.

Day 20 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #pwme #cfsisamisnomer #ChronicIllness #ThyroidCancer #Cancer #Disability #Love

Mark Twain once wrote, "Give a man a reputation as an early riser and he can sleep 'til noon."

For a long time, UW Medicine was known as a top-tier medical facility.

But in recent years--and this started before the pandemic--they've been on a downward slide. One of their residents even confided in me last year that UW's lack of communication among clinicians was alarming to her.

Today was a loooooooooonggggg day, so I'll leave you with this:

UW Medicine is, at this point, definitely a late sleeper.

I'm curious to learn how much longer they can coast on their reputation as an early riser.

Day 19 of 365

#MyalgicEncephalomyelitis #ThyroidCancer #Cancer #ChronicFatigueSyndrome #cfsisamisnomer #pwme #Disability #ChronicIllness

Daniel Moore is a British musician who had Myalgic Encephalomyelitis as a child, seeming got better, and then experienced a return of the illness in 2018.

In 2023, he co-founded the M.E. podcast Post-Exertional Mayonnaise to discuss M.E., music, writing, grief, and whatever other topics might pop up.

He's a good, smart person and I appreciated his questions.

On my living w/ M.E. for 32+ years, thyroid cancer for seven, the small heart attack, my first book Altitude Sickness about my best friend's death from mountain climbing, and my upcoming book Fire in the Hole: A Eulogy for the Living on the massive catastrophe of M.E.

On YouTube:

www.youtube.com/watch

And on Spotify (it's available wherever you get your podcasts):

open.spotify.com/episode/7x8qVAJhNjKmddhXnUY5J9

It's hard to be human and it's vastly harder to be a sick and/or disabled human, so I hope your new year is off to the best possible start and that the world is treating you w/ the kindness you deserve. All the best. xo

Day 18 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #pwme #ChronicIllness #ThyroidCancer #Cancer #HeartAttack #Writing #Music #Disability

This song has gotten me through some rough nights and while I know it was written about sexual assault, I find that it works for other traumas, too, because it gorgeously, wrenchingly describes the resulting isolation.

A colleague left a hideously ableist comment on an interview I recently did--so bad that the podcast host removed it, god love him--and I keep thinking that one day this miscreant will wake up to find his body no longer cooperates and *then* he'll apologize like the others before him.

I don't know why some individuals must learn the hard way--seems like it'd save everyone time and effort to proceed with kindness--but after 3+ decades with disability, I've learned that some folks only truly get it when they become ill and/or disabled. At which point they're filled with remorse and start asking both for pointers and physician recommendations.

I don't wish any of this on the person in question, but almost no one dies in their sleep at 105 and, most likely, something will get him long before then.

So, I'll accept his apology when he offers it.

But I gotta say, I won't be that bummed out when it happens to him.

Day 13 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #pwme #ChronicIllness #Disability #Ableism

I've been disabled w/ Myalgic Encephalomyelitis for 32+ years and have had cancer for seven and each year at the holidays there's a deluge of articles instructing you how to navigate the holidays while you're ill.

And you can't, really, if you want to participate at all. Because most persons don't understand major illness and/or disability until it happens to them--much respect to everyone who truly does get it--so when you ask that a portion of the festivities be tailored to your abilities, well, good luck.

I'm extremely lucky and I've reached a point in my life wherein I can only spend the holidays with loved ones who understand my physical parameters. I appreciate them so much, but I also know from experience how many others--the ones I've left behind--are stubbornly, stupidly steadfast in their beliefs that disabled and/or ill persons just need to try harder at the holidays and everything will be merry and bright.

I've been able to walk my Pomeranian Jordan today and to feed him and play hallway fetch with him. Other than that, I've been lying flat, feeling like death is imminent in the next five seconds.

But this past week really was wonderful. And while I curtailed all extraneous activity, my body still didn't cooperate.

In my case, it was worth it--a lot of fun, even masked and lying flat on the couch--and if you're physically disintegrating tonight, too, I hope it was worth it for you, as well.

Good wishes all around.

Day 12 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #pwme #Disability #ChronicIllness #Holidays #WarmWishes

I read the tragic news of Beth Mazur's passing this morning. We didn't know each other per se--we'd followed each other on Twitter for years--but her death hits hard. As co-founder of M.E. Action, she did so much to help persons with Myalgic Encephalomyelitis, it's unspeakably awful that it killed her.

If you have the strength, contact your Congressional representatives and explain to them why M.E. needs vastly more federal research dollars.

More on Beth Mazur's passing here:

Sad News From Our Community — Content Warning

Good night, all. Hope you're doing as well as possible.

Day 8 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #pwme #cfsisamisnomer #ChronicIllness #bethmazur

Hello, all! Hope you're doing as well as possible navigating the holiday miasma in an uncooperative body.

Earlier in the week, I began writing an M.E. blog here. Fingers crossed, it'll be daily.

I've had M.E. for 32+ years, thyroid cancer for seven years (the thyroidectomy and radiation didn't get rid of the cancer, but they did cause myriad ongoing complications), and a little over a year ago, I had a small heart attack. (This isn't as random as it sounds: research has shown that persons w/ M.E. have increased rates of cancer and of heart complications.)

I'm a longtime writer who's written each word from bed (please see my bio below), lifelong Seattleite, and guardian to my dog Jordan, who's a beacon of all that's good and true.

My health continues to decline--lately at a quickening rate--and I want to write about M.E. in real time here and, also, meet some other salient humans fighting many of the same battles.

All the best to each of you,

Litsa

Day 5 of 365

Litsa Dremousis is the author of Altitude Sickness (Future Tense Books). Seattle Metropolitan Magazine named it one of the all-time "20 Books Every Seattleite Must Read". Her essay "After the Fire" was selected as one of the "Most Notable Essays 2011” by Best American Essays, and The Seattle Weekly named her one of "50 Women Who Rock Seattle". She is an essayist with The Washington Post.

Her work also appears in The Believer, BlackBook, Esquire, Jezebel, McSweeney's, Monkeybicycle, MSN, New York Magazine, Nylon, The Onion's A.V. Club, Paste, PEN Center USA, Poets & Writers, Publishers Weekly, The Rumpus, Salon, Spartan Lit, The Weeklings, in several anthologies, and on NPR, KUOW, and additional outlets. litsadremousis.com, @LitsaDremousis.

#MyalgicEncephalomyelitis #pwme #cfsisamisnomer #ThyroidCancer #Cancer #HeartAttack #ChronicFatigueSyndrome #ChronicIllness

I've had M.E. for 32+ years and have written about it extensively for the Washington Post and for other publications.

Since I first became ill in 1991, the CDC and the NIH have been derelict in their duties to protect the public from a pernicious illness that's disabling, degenerative, and potentially fatal.

In Hillary Johnson's seminal tome Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Crown Books 1996, reissued by Penguin Books 2006), she broke the story that the CDC had misappropriated tens of millions of dollars approved by Congress for the study of M.E., then still called "Chronic Fatigue Syndrome" or "CFS".

[Edit: When I first published this piece last night, I incorrectly wrote that the Washington Post had first broken this story. Hillary Johnson and I have known each other online for years--which I've always considered an honor because I first read her reporting on M.E. in Rolling Stone in the Eighties--and I appreciate that she reached out to me to relay that she broke the story. I appreciate the kind manner with which she did so and I'm mortified by my error. I read Osler's Web when it first came out and highly recommend doing so if you haven't already. More about Hillary Johnson and Osler's Web on her site here: www.oslersweb.com/the-book]

Because it's important to understand how we got here, at a point where said illness was wrongfully either dismissed or underestimated until millions of lives were destroyed and an untold number of persons were dead, here's a truncated version in a 1999 Washington Post story, for free:

www.washingtonpost.com/wp-srv/national/daily/may99/cdc0528.htm

In 2000, then-CDC director Jeffrey Koplan had to apologize during a Congressional hearing because, twice in two years, the CDC got caught misappropriating funds Congress had earmarked for CFS [sic]. Seriously, what kind of fuck weasel bullshit venality is this:

www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)7...

I'll get to the failings of the NIH as I go here--others have written about all of this before, but I'm alarmed by how many persons with M.E. still don't know the history of the illness and how it came to be either derided or ignored by the medical establishment.

We're in a fight for our lives and information is power.

Day 4 of 365

#MyalgicEncephalomyelitis #MillionsMissing #pwme #cfsisamisnomer #Disability #CDC #NIH #ChronicIllness #oslersweb #hillaryjohnson

I'm particularly ill tonight so I'll keep it short.

Everyone w/ M.E. and all our allies should be following this story. The Times of London covered it, too, but their feature is behind a paywall, so here's a free version in Devon Live.

Physician abuse and/or neglect of persons w/ M.E. kills.

Excerpt:

"During the pre-inquest, Maeve's family called upon assistant coroner Deborah Archer to hold an Article 2 inquest to consider whether systemic or policy-based failures could have caused her death. Article 2 of the European Convention on Human Rights protects people’s 'right to life'.

Mr O’Neill told the coroner that Dr Hemsley was describing 'a failure to protect not just Maeve’s life but the lives of those, like Maeve, with severe ME'.

He said: "This was not a case of a local hospital being unable to treat a patient with a particular and unusual illness. This is a nationwide failure to help ME sufferers. This is the very definition of a major systemic failing.

“In my view, this is an admission that there was a breach of the duty to protect someone who was in the care of the state … That breach, in the form of an admitted inability by the NHS to provide care, led directly to Maeve’s death."

Link:

Death prompts Devon hospital chief to speak out on 'ignored' illness

Day 3 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #Disability #pwme #physicianerror #MedicalTrauma #Britain

Here's part of a text I sent to my mom and brother yesterday.

I'm not bound by HIPAA and it's not defamatory if it's true so, as the saying goes, let's tell the truth and shame the devil, or in this case, my Harvard grad PCP who knew nothing of M.E until I became his patient in the spring and started sending him research:

"Update on my end:

At 4pm my UW [University of Washington Medicine] PCP doc sent me a message on MyChart:

He had only just now sent an email to the M.E. specialist at Mayo Clinic.

He received an auto-reply saying she's out of the office until 'early 2024'.

So, I've been his patient since early April and he still hasn't obtained a referral to an M.E. specialist for me.

At one of our first appointments, he said he'd obtain said referral for me, then he lied and said UW had docs abreast of M.E. research, then he said a month and a half ago that he'd reach out to an M.E. specialist at Mayo Clinic.

Now I find out he has had no contact with her at all so far.

Took [my Pomeranian] Jordan for the longest walk I could sustain.

They're watching my ongoing disintegration and are, for the most part, worthless."

Day 2 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #physicianerror #ChronicIllness #pwme #Disability