Alice

#MECFS for almost a decade now. Hoping to connect with others & find a way out.

[Alice @Alice_mecfs]

Healthrising article w/ @Naomi_D_Harvey!
Turned into a much bigger project than we anticipated.
Many thanks to folks who helped review and edit & of course for @CortJohnson in running HR!
Hoping for some good discussion.

#MECFS #LongCovid

https://t.co/oQX6qDaA8A

[Long Covid Advocacy 💙 @LongCovidAdvoc]

We have discovered that Alan Levinovitz's new book has already sold to publishers

And it's about psychogenic illness. No wonder he thinks Long Covid is 60-80% psychogenic & why he won't reconsider his framing. He is invested

That a major publisher @HenryHolt is running this raises serious concerns

[Adam @ABrokenBattery]

The article also doesn’t mention that when claims of harassment were tested in court, they were found to be “grossly exaggerated”.

PACE author Trudie Chalder acknowledged that no threats had been made to the PACE researchers.

[Olenka Sayko @coco_chatel]

Strongly urge those who have weighed in on the WIRED #LongCOVID piece to send a letter to the editor. Online discourse is one thing, but it’s important to let those in positions of authority know how they’ve misstepped.

My letter to the editor is posted below in this 🧵

[Prof. Akiko Iwasaki @VirusesImmunity]

Excited to share our study by @keylas3 et al. on pathological autoantibodies in people with Long COVID. We asked whether IgG in patients with Long COVID bind to human tissues/antigens and cause pathologies when transferred into mice. With @PutrinoLab

https://t.co/tcowCufWyf

[Alice @Alice_mecfs]

@SalvMattera Because different triggers can lead to the same outcome and all the research I've seen suggests trigger doesn't matter

[Hannah Davis @ahandvanish]

Small #LongCovid study finds LC patients' cells used way more energy than controls during infection, then way less.

This correlated with LC symptoms & suggests widespread metabolic reprogramming. Cells also ignored crucial hormone and metabolic signals.

https://t.co/f2XYoZTd2A

[Alice @Alice_mecfs]

@davidtuller1 Thank you for everything that you do!

[Nature Unedited @NatureUnedited]

Rabbits show dominance by demanding to be groomed, while cats show dominance by grooming the other.

A perfect relationship

[victoria ♀️ @fatfabfeminist]

there are some things that are only impressive because they came from two human hands

[Alice @Alice_mecfs]

MCAS treatments going mainstream. Meanwhile, I'm just trying to figure out why pepcid solves one major problem for me but also significantly worsens my #MECFS overall.

https://t.co/4weqNXtNPC

[Alice @Alice_mecfs]

@ahandvanish Did they control for length of illness? My first thought would be that this is something that spikes early in ME then decreases over time.

[Naomi Harvey “PhD Witch” #WearAMask @Naomi_D_Harvey]

I could take a group of dogs, and compare their biology to a group of mixed animals and say, “look, they’re not the same!”

Everyone would say “Of course they’re not the same, they’re different species!” and Twitter would mock me severely.

Yet somehow, it’s done with LC & ME 🤷🏻‍♀️

[cats with powerful impression 🐾 @catshealdeprsn]

A communication mismatch that's just too adorable
・Cat's headbutt = expression of affection
・Goat's headbutt = invitation to play

[Alice @Alice_mecfs]

Apartment laundry now costs $4.50 for washer and $4.50 for dryer. WTF? Time to start hand washing?

[Alice @Alice_mecfs]

Please enjoy this video of a polar bear taking a bath.

https://t.co/8U9W40JVOn

[Alice @Alice_mecfs]

@SalvMattera The number of people who don't understand what random noise looks like really frustrates me. Science would move so much faster if there was decent population level statistics literacy.

[Salvatore Mattera @SalvMattera]

This happens a lot in the Long COVID space: A trial fails, someone says "well, if you look at the individual patients, there was a subgroup that responded. That means this drug works, we should just give it to that particular subgroup."

This is a form of statistical fraud called p-hacking.

If you have enough data, and you look for patterns, you always - just through random chance - find something that looks like signal. But it's just noise. In any trial with enough participants, some people will improve for no particular reason (random chance, placebo, etc). Just out of pure chance. If you have enough variables, you can always find some story to tell about how they're part of a "subgroup".

Now to be fair, I wouldn't discard this approach entirely. You can use this as the basis for a subsequent trial where you test the new subgroup. But that's the most you can do. It is just a hypothesis.

There are other examples where medicine has found subgroups, for example, breast cancer. But this was done after decades of mechanistic research to understand the breast cancer process. They identified specific molecular targets, and then were able to group people into different responder subgroups. They did not do it by data mining failed breast cancer trials.

[Alice @Alice_mecfs]

how to use a dishwasher.

So yeah, apparently I did not forget how to use a dishwasher it was broken. That's one round of gaslighting won at least. #MECFS #LongCovid

[Alice @Alice_mecfs]

It's taken me 6 weeks to get my dishwasher fixed because the first time I called in the apartment repair person they tried to imply it was user error.

I'm so burned out from dealing with gaslighting that I then spent a month trying to convince myself I had forgotten..

[Alice @Alice_mecfs]

Any thoughts on why pepcid would seriously decrease my energy? It's dramatically improved my sleep (was waking up gasping for breath all the time, which seems like it was a reflux thing) but at the same time my energy has tanked. Doesn't seem to be iron related.
#MECFS #LongCovid