Thread by @exceedhergrasp1

The chronic illness community saw it coming and did our best to prepare folks. #MEAction had a coordinated response. But the chronic illness community is not a public health agency, and cannot coordinate a response on the level necessary to educate the public as a whole. (1/7)

https://twitter.com/LauraMiers/status/1462144530187182081

We're told patients should ensure researchers study #MECFS rather than CDC/NIH ringfencing funding. At the public health level, we were left to do our best to educate about the potential for post-viral chronic complex diseases like #LongCOVID. I'm not sure how many heard. (2/7)

I mean, I'm still hearing that #LongCOVID is a 'mystery' & "who could've predicted--?" & I'm VERY worried about who has been identified as an expert in the #LongCOVID space who is not a patient. They largely have no experience with post-viral disease before COVID. (3/7)

A lot of them fall back on chronic illness tropes, mythmaking to fill their knowledge gaps. Favorite chestnuts include: patients "identifying with the sick role" won't get well, wellness = virtue, and disdain & disgust for chronically ill people as a whole. (4/7)

Folks who've been here 6mo-1.5 yrs, talking over the #POTS & #MECFS clinicians & researchers who've been here for decades. Astonishing hubris from folks who have never thought of post-viral disease as 'real': largely, these are our new experts. (5/7)

If you are someone who is coordinating these groups, and you intend to include clinicians w/ME or POTS or MCAS experience (or any patients at all!), perhaps only bring in ppl in the #LongCOVID space who are aware of that, and recognize the necessity of it? (6/7)

We're traveling down a road in #LongCOVID that is very familiar to #MECFS patients and expert clinicians: here lies marginalization, dismissal, and tragic consequences for the public in the COVID era. (7/7)

In case you are new to this, and wondering, "what road is that?"
~ You'll be sent mostly to psych & PT, where you'll be told:
~ Your thoughts are making/keeping you sick
~ Good people recover; people who don't are personally deficient in some way
~ You're to blame for being sick

~ Clinicians will naively attribute psych & PT to early recovery in their patients (which is common in post-viral disease), reinforcing their pre-existing biases that post-viral disease must be anxiety plus deconditioning

PwME have fought to ensure that they are not forced into graded exercise and CBT to 'cure' them... but clinicians offering CBT & GET can repeat history almost word for word, now. In part b/c some advocates fought hard to push for a disconnect between Long COVID and ME.

Of course, recovery seems to be a matter of actions + genetics + environmental luck of the draw, so many will never recover; those folks will be left to fend for themselves. Unless we press for radical change.

Finally, the research you see right now will sputter out. Our government agencies will move on to funding the next shiny thing & #LongCOVID will be forgotten just like the long-term victims of every other outbreak were forgotten: unless you fight.

Y'all know HIV was a crisis, and it had 100% mortality. Are my friends new to advocacy aware of just how hard people had to fight to get CDC to acknowledge, research, and recommend treatments for HIV/AIDS? npr.org/2021/06/16/100…

Are you aware of how hard we've been fighting for #pwME to get the same -- that there are millions of us in the US alone? That only 13% of us can work full-time, and we have an incredibly low median quality of life compared to folks with other diseases? meaction.net

And do you think that #LongCOVID research, treatment, and compassionate care will be any easier to achieve?
I assure you, we are no different.
If you've held yourself back from allyship b/c you felt a bit unsettled around the idea of advocacy, the time to shift that is now.

(Not all Long COVID is ME! But by framing Long COVID as a novel 'mystery', we block treatments & research that may help, even as we look to resolve symptoms unique to/more common in Long COVID. Many pathogens trigger Guillan-Barre; ME is different b/c? it's stigmatized.)

Got my first tsk-tsk for "being negative"!
If y'all have followed me for any length of time, you KNOW I predict these things.
I'm speaking from experience & I also see/hear things you may have not.

Anyway, this is taking off fast for one of my threads, so if you have the time/space and inclination, please consider donating to advocacy orgs like mine; we have an AMA coming up as one of our fundraising goals. meaction.net/eoy-2021/

Pls also consider donating to Patient-Led in the Long COVID space: gofundme.com/f/patientled-r…

And if you have a chronic complex disease or could serve as a healthy control, please consider taking the Symptom Cluster Characterization in Complex Chronic Disease survey, which you can learn about here: meaction.net/epi. Your voice matters. Your experience matters.

Thanks for reading and sharing. We are in this together.

ok I gotta rest after all that. Pls stay kind

I’m sure I’m not the only one seeing this:

https://mobile.twitter.com/WildNycgirl/status/1462291408266616833