cfsisamisnomer

Paradoxically, I'm too ill this evening to write in detail about the findings released last week by the NIH.

I agree w/ the great Dr. Lucinda Bateman--quoted here in the NPR piece--that other research has already discovered much of what the NIH concludes.

No matter what, it becomes far easier for a person w/ M.E. to sue their healthcare provider if said provider is failing in their duty to care:

Day 68 of 365#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #ChronicIllness #Disability #NIH Clues to a better understanding of chronic fatigue syndrome ...

I don't think most healthy and/or able-bodied persons understand how differently time passes when you live in a persistently uncooperative body.

Much love to those who really do try to get it. Thanks for your kindness and empathy.

As for those who refuse to even try to understand how illness and pain distort the passage of time, well, almost no one dies peacefully in their sleep at 100: they'll understand this eventually.

Day 63 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #ChronicIllness #Disability #ChronicPain #Cancer

The way physicians are either just now catching up and learning about post-viral illnesses or sticking to their tried and true path of doing nothing and/or causing harm is unethical, illegal, and shameful.

They're failing in their duty to care.

So sick of this shit.

Day 61 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #ChronicIllness #Disability #MedicalProfessionals

I'm just so freaking worn out. Here's the latest re the current Ampligen trial.

For those who might not know, Ampligen is often referred to as "the Lazarus drug" b/c in its previous trials it has effectively combatted Post-Exertional Malaise.

However, it can sometimes cause liver damage. As such, a debate has swirled around Ampligen for decades and, indeed, some Myalgic Encephalomyelitis advocates think the risk of liver damage has been over-interpreted.

After a particularly horrid week, I was so hoping we'd all get some good news re the Ampligen trial. And I still believe it could be modified in a way that maintains its efficacy w/out causing severe side effects.

I do know that there's a massive financial incentive to develop a long-lasting treatment for both Myalgic Encephalomyelitis and for Long Covid b/c w/ tens of millions of us out of commission in the U.S. alone, well, someone's gonna get rich if they can treat us.

Damn post-viral illnesses straight to hell.

Day 54 of 365

AIM’s ampligen stumbles in Phase II trial

#MyalgicEncephalomyelitis #longcovid #ChronicFatigueSyndrome #cfsisamisnomer #ChronicIllness #PostexertionalMalaise #Ampligen #Disability #Ampligen

Chronic Regional Pain Syndrome aka CRPS is yet another poorly understood, pernicious illness that disproportionately impacts women and girls. In this case, it led to an utter fucking nightmare for both the patient, Maya, and her family. The film expertly depicts the hell that results when physicians don't believe the patient and wrongfully dismiss debilitating physical symptoms.

It might hit too close to home, so proceed accordingly.

I've been too ill to write here for the past two weeks--the symptoms from the M.E., cancer, and heart attack are currently wreaking utter havoc w/in my body. So maybe it was an odd choice to watch Take Care of Maya tonight. On the other hand, I believe information is power and that it's valuable to keep learning how and why a medical system that's ethically and legally obligated to help instead too often harms so many of us:

www.youtube.com/watch

Day 45 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #ThyroidCancer #Cancer #CRPS #chronicregionalpainsyndrome #ChronicIllness #HeartAttack

...wherein she lays out the current diagnostic criteria for clinicians.

It's six and a half minutes long and easy enough for even the most addle-brained physician to understand.

All good wishes to everyone else with Myalgic Encephalomyelitis who's fighting to stay alive and live the healthiest life possible and, of course, the medical neglect and abuse that swarm this illness like flies on a picnic table. We got through another day and that's something.

Dr. Lucinda Bateman, one of the good ones:

www.youtube.com/watch

Day 30 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #ChronicIllness #Disability #drlucindabateman

Like much of the Lower 48, Seattle was plunged into a deep freeze a few days ago.

And while I completely understand and agree with all the concerns surrounding health and safety, I also think the folks posting some version of "I've been inside for three days and I'm so bored!!!!!!!" as if they were serving time in a gulag really need to bottle that noise up.

As one of my best friends whose illness and resulting disability keep her indoors way too much says, "Oh, those freaking amateurs."

Millions of us live this way and (almost) no one seems to give a damn.

Day 28 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #ChronicIllness #Disability

I've had Myalgic Encephalomyelits for 32 and a half years and I never stop hating parsing out my life in the tiny increments that my body allows. And I know I'm one of the lucky ones.

Everything listed in the title feels like a huge accomplishment--and under the circumstances, it is, really--but it also feels like bullshit b/c, seriously, why did I study so hard and work so diligently only to have "putting the towels away!" become my giant accomplishment?

I loathe this illness with the heat of a thousand suns.

Day 27 of 365 (I had to take the last week off b/c I was too sick to write here, in a freaking blog and, also, had seemingly a million physician appointments. "Argh!" and other pirate noises.)

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #ChronicIllness #Disability #PostexertionalMalaise

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