I wonder how many realize we have not each touched on the worst-case scenario w/SARS-CoV-2. We're so busy trying to agree on what's happening right now.

You can't predict the future while you're still negotiating the present.
Look, clear-cut answers aren't easy. But saying, "getting COVID is good b/c it gets rid of COVID anxiety!"; or that COVID is over; or that COVID is like a cold; or that the loss of over a million American lives is nothing... these are deliberately misleading statements.
There's also a kind of ethical undercutting. We are supposed to laugh off a million American lives. Doing so is presented as worldly and grown-up.

We should be grieving.
All this pretense -- and our focus on it, the bread-and-circuses bit -- means we are not planning for what's next.

I get it. It's fun to yell blue checks on Twitter. It makes us feel good. Righteous.
But let's put our focus on what's most important. That's what we can do for each other today, and what comes next.
What (may) come next. A non-exhaustive list of potential health and economic consequences for continuing to downplay SARS-CoV-2 I really don't see in the news or social media:
Since this is doing some numbers, please consider donating to the orgs doing patient-led work in post-viral disease.
My org, #MEAction (@meactnet): meaction.net/donate
Body Politic (@itsbodypolitic): gofundme.com/f/fuav69-body-…
Patient-Led (@patientled): gofundme.com/f/patientled-r…

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More from @exceedhergrasp1

May 17
What are some things I consider Very Bad that I don't see?
1) The Multiple-Hit Hypothesis

Folks who recovered from #LongCOVID can & will catch SARS-CoV-2 and contract #LongCOVID a second time. And many won't recover this time.

Many #pwME had multiple hits (usually but not necessarily w/o full recovery) before a 'point of no return'.
2) A Deadlier Variant

People assumed Omicron was 'mild' because they observed fewer deaths. As it turns out, it was killing vaccinated ppl less often. It's not less deadly than other variants. There is no reason we will move towards less deadly variants. scmp.com/news/world/uni…
Read 15 tweets
May 17
Early on we observed a period of improvement lasting several months followed by a 'second dip' into harder onset.

Even I, with really mild symptoms, had a noticeable dip around mo 3-4 after 'recovery'.

If you did too, it's not b/c you did anything wrong. #LongCOVID (1/3)
There are many possible reasons for this (including a return to semi-normal immune function!) but it is a pattern seen in many with #LongCOVID. And, looking back, in those with #MECFS. (2/3)
(Not claiming Serpina feels this way, but using their story as an example only!) (3/3)
Read 4 tweets
May 6
So 2020-22 has opened a lot of doors for folks in the ME community. Overall, this is great!

AND it's opened the door to charlatans, tokenistic participation, patient-blaming & ableism, cutesy-app designers & folks clueless about chronic complex disease presented as experts. 🧵
People with #LongCOVID who are new to the space may be unaware how hard #pwME have worked to eradicate people of bad faith from our research, clinical, and advocacy spaces. We've developed a reputation for it: #pwME don't take yr sh!t.
We've developed that tough attitude after being exploited. A great deal. And lied about. A great deal. And promised. A great deal. And harmed. A great deal.

We're trying to stand between you and the same.
Read 6 tweets
Apr 16
Anybody remember when, in 2016, #MEAction put together this community request to help respond to the @NIH 's RFI on ME?

I was pretty new to the world of advocacy. A long, thoughful 🧵(1/)

meaction.net/2016/06/18/tak…
That summer, I went to the Johns Hopkins Summer Epidemiology Seminar; had a great prof I still talk to now & again.

Put the survey together (with the help of Paige) and we got 1800+ responses to questions around patient research priorities in ME/CFS. (2/)
I was in a flurry... I remember I had clips from pertinent articles splayed out all over my living room carpet and there was a SYSTEM. Vicky Whittemore kindly gave me an extension when I asked. Then Ben HsuBorger saw the behemoth I'd produced and said, "JAIME. JAIME NO." (3/)
Read 23 tweets
Mar 27
Given the number of questions on this one, an elaboration.
ITT (insulin tolerance test) is often mistaken for a GTT (glucose tolerance test). They are different. You might even say they are opposite!

GTT tests your response to high glucose.

ITT tests your response to low glucose.
I've had both, given my metabolic symptoms.

GTT can be done in a regular doctor's office.

ITT has to be done in a hospital.
Read 14 tweets
Mar 27
THREAD #2:

Neuro diseases like ME/CFS may involve hyperexcitability. Hyperexcitability of the neural network can occur after brain injury or degeneration & is a key feature in epilepsy, neuropathic pain, & even tinnitus. bioelecmed.biomedcentral.com/articles/10.11…
It is well-known that dropping carbohydrates helps reduce the number of seizures in treatment-resistant epilepsy, for example. This is not a theoretical construct, but one for which there is an official and extensively tested diet. hopkinsmedicine.org/neurology_neur…
The theoretical framework re: why this works is the PUFAS (polyunsaturated fatty acids) modulate the function of a range of ion channels, rendering them less excitable. pubmed.ncbi.nlm.nih.gov/23049748/
Read 27 tweets

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