Well, this is the end of #MillionsMissing2021 and the last of my #MEAwareness posts for this month. (I’d say for this year, but we all know that isn’t likely.)
Today, Friday, 5/14, is a day to Connect with Community via #MEAction‘s “Gatheround” Community Meet & Greet at 12pm-1pm (PST) / 3pm-4pm (EST). Hope you are able to attend!
At Wednesday’s #MillionsMissing2021 global event, they announced a new research initiative: #MEAction’s Chronic Illness Survey Adventure (Symptom Cluster Characterization in Complex Chronic Disease), a survey-based study to probe more deeply into ME/CFS and Long COVID, as well as the co-morbid conditions POTS (Postural Orthostatic Tachycardia Syndrome), hEDS (hypermobile Ehlers Danlos Syndrome; which I have), and MCAS (mast cell activation syndrome).
As they wrote in the email:
This is a huge endeavor that is years in the making! Today, as part of #MillionsMissing, you can sign up to be a part of this brand new study that will give researchers and clinicians insight. We need all your help to gather the richest dataset on complex chronic disease ever created.
As soon as I recover, I will definitely be signing up. (I’m already part of Solve ME‘s You + ME Registry and Biobank, and CreakyJoints‘s Arthritis Power Research Registry, which I qualify for because I have osteo arthritis and fibromyalgia. You can join the first if you’re healthy or an MEcfs patient, and the second if you have arthritis. Both allow you to track your symptoms via an app, and the data is then aggregated for researchers to study. Just another way I can help.) (Also, I nerdily like take surveys. And I used to enjoy creating surveys as part of my marketing jobs!)
I attended yesterday’s Virtual Georgia event, which was wonderful, but it made me very very extra tired. My symptoms are flaring: my head feels like it’s visibly pulsing, and the thoughts in my brain are flying around like flopping fish, and I’m having difficulty catching them; my temperature dysregulation is acting up again – I’m hot-then-cold, hot-and-cold, hot-then-cold, sweating-and-freezing; and of course there’s the increased pain levels all over my body, even in places that don’t usually hurt so noticeably.
Thus, I won’t be able to attend the Meet & Greet. Also, after I publish this post, I’m 99% sure I’m done for this week. I’ve tried to rest between my activities, but the adrenaline – and my stubbornness (and “tenacity”, as a friend called it) – is keeping me up. And it’s past time for me to REST. Aggressively.
I’ve said before that my blogging and advocacy is an act of defiance: this disease may take my literal voice away (as it first did two years ago for #MillionsMissing 2019, and does periodically to this day), but I won’t be silent.
On Wednesday, a relative texted me a link to the musician P¡nk’s song “Wild Hearts Can’t Be Broken” [Youtube link] from her 2017 album Beautiful Trauma, [affiliate link], with the note that she was dedicating the song to me. The lyrics made me cry:
I fight because I have to
I fight for us to know the truth
There’s not enough rope to tie me down
There’s not enough tape to shut this mouth
The stones you throw can make me bleed
But I won’t stop until we’re free
Wild hearts can’t be broken
Yup. That’s me. Even tho this advocacy is actively harming my body and brain, and the crash will be great, I’m doing it willingly and with love for all of the patients who are too ill to advocate, or temporarily unable to, or who are afraid to publicly tell their stories about their illnesses. I’m doing it so they will know #YouAreNotAlone, something I wish I had when I first got ill. And I won’t stop.
As I am completely worn out and have no more thoughts in my brain and am even slightly delirious, I will close the week with some facts about MEcfs (graphics created by #MEAction):
That’s right – approximately 2.5 *million* people – in the US alone – have MEcfs! And that number is probably low, because so many never get diagnosed.
We don’t know what triggered my MEcfs.
That’s why we use the hashtag #MillionsMore: current estimates indicate 160 million people worldwide have gotten the virus, which equals approximately *40 million* experiencing long-term effects.
That means MEcfs is not funded at the same level of the disease burden (or “the impact of a health problem on a given population”) – it’s severely underfunded by the NIH (National Institutes of Health).
Yup: totally underfunded, as JAMA, a group that publishes research studies, reported.
That’s… that’s too many. NO ONE ELSE should have to suffer this disease.
That’s right: not a single FDA-approved treatment. Patients, like myself, have to experiment until they can cobble together a treatment plan that helps them.
I am one of those patients. I wish I could work. I would rather work.
If you haven’t read all of the other posts I wrote and published this week, I hope that you will:
- #MEAwareness: You Are Not Alone – includes things you can do!
- #MEAwareness: Artists with MEcfs
- #MEAwareness: Guest Post – My MEcfs
- #MEAwareness: My Story for #MillionsMissing
- #MEAwareness: Guest Post – My Open Letter to COVID Long-Haulers
- all of the posts I’ve published on my blog about MEcfs Awareness
Newsweek published a very long article about Long Covid and MEcfs on Wednesday: “In Long COVID, Advocates Battling ME/CFS See Allies and Hope“. I am unable to read it all right now, but what I did read sounded very positive. Us #MEeps hate that a pandemic is what finally brought our disease to mainstream media, but we are glad it finally has been noticed and is being talked about.
Also, if you haven’t watched it yet, please watch the documentary Unrest. (Free on Netflix.) It will truly open your eyes to the reality of living with MEcfs.
And that’s all she (meaning me) wrote for #MillionsMissing2021.
Don’t ask me why I thought it was perfectly good idea to plan on writing and publishing this many posts (I was obviously deranged at the time), or how I managed to produce all these posts (I’m not sure, especially since I waited til the very last second to do so, and it involved waaayy too much pushing myself and sitting at my computer and typing, and very little resting, all very bad for my health and very good for the pain goblins arising and ravaging my body; and also, I’m wearing the same PJs I started out in, and I’m not sure I’ve brushed my hair the entire time, tho I did brush my teeth), and remind me not to do this again next year (seriously. Tell me NO!).
I hope that my efforts have made a difference, and that you have learned something, and more importantly, will act. (Again, you can find a list of things you can do in the first post from this week.)
And please, for all that is holy, please please tell me if there’s anything absurd or inaccurate in this post. If there isn’t a typo or error, it’s truly a miracle.
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