NEW ARTICLE from me: On the lesser-known harms of the Tilt Table Test, esp for patients with ME/PEM.

I examine patient accounts, what clinicians say, alternatives, and how to prepare/mitigate the damage. 1/

https://twitter.com/betsyladyzhets/status/1909601687645401429

The Tilt Table Test (TTT), used to diagnose POTS, is known to cause patients to faint or worse, but negative effects are thought to be mild and temporary.

Yet patients have long reported otherwise. I ask: why they are they being ignored? 2/thesicktimes.org/2025/04/08/its…

If you’ve made serious improvements from a debilitating chronic illness, there’s a few reasons why you shouldn’t then spend your time lecturing patients about why they’re doing it wrong and not getting better:

1. You’re an asshole and not the center of the universe… 2. You’re probably wrong. Ten people can have ten different causes for the same illness. And not everyone tolerates your approach.

3. You’re in remission not cured. Health has given you the false impression of superiority, but disease is coming back, as it does for anyone….

If Trump wins, some comforting thoughts for distressed democrats:

- “Democracy” has long been over/never existed for a lot of the country. Your privilege shielded you from that.

- When Trump is in power, resistance builds. You have the chance to actually do things… 1/ - Democrats weren’t willing to do some things to maintain power, including running a real primary, confronting Israel on its genocide, running on real economic change, expanding the court, etc.

They were willing to forsake power instead of any of that.

Am I alone here with how dangerous tilt tables are for many of us w MECFS

How is this not more widely known.

If you’ve had a bad experience with one, please share here I want @polybioRF @microbeminded2 to reconsider its use

UPDATE: @actupny had a meeting tonight and they suspended another Covid advocate for unfair and hypocritical reasons, as a result of this reporting. 1/

https://twitter.com/jewstein3000/status/1835675233132441659

Bridgette Jones has been an active member for a while. She’s very sick, uses a wheelchair, and has put her body on the line to support ACT UP at actions that make the org look good, like the Nassau County mask ban hearing.

The people who suspended her didn’t attend that. 2/

NEW investigation from me for @DisVisibility:

@actupny faced heat online for tweets that many took to be minimizing Covid. A week+ later, the org apologized.

The behind-the-scenes story is one of ongoing internal conflict, ableism, and suppression. 1/
disabilityvisibilityproject.com/2024/09/14/a-t…
The Twitter controversy gave @actupny a chance to address internal tensions around Covid.

Instead a small group of members w/ power took a reactionary approach, one in contrast to the org's famed legacy of amplifying loud and sick people. 2/
disabilityvisibilityproject.com/2024/09/14/a-t…

Something I learned from my interview w Disability Rights NC’s policy director…

NC legislators were surprised by the pushback on the mask ban. They really didn’t realize how many of us still need to mask.

For that… I blame Biden mostly…. Biden’s impetus to bury the reality of Covid was about as clear and directed propaganda as I’ve ever seen in politics, even more than the Iraq War. Maps were changed, data collection was cancelled, quarantines were ended, and his leaders…

NEW STORY from me for @thesicktimes: A legal and political analysis of mask bans across the country. With a list of bans per state.

Politicians tell us mask bans are about crime and antisemitism. What they’re not saying:

Mask bans are about Covid. 1/

thesicktimes.org/2024/09/03/per… There is so much emphasis in the news on new mask bans but there are 21 states and many cities with existing bans that will be enforced more and more.

We compiled a complete database so you can learn the laws and precedents where you live. 2/ thesicktimes.org/mask-bans-and-…

I think about “Havana Syndrome” a lot and maybe that’s because of my experiences. I was immediately made sick from the air around Ground Zero and told it was safe and to return to work. I never recovered. 1/ Since then I have had such severe chemical sensitivity that I’ve had to move constantly and I’ve been gaslit every single time I’ve pointed out gas leaks, mold, pesticide (and where I could, I’ve always been proven right). 2/

If you wonder how genocide happens, look at your own responses to Covid cautious people and the immune compromised.

Did you have personal beefs with people who asked you to keep masking? Did you mock or alienate them? Does that make it easier for you if they get sick or die? Each year, I earn more and more wisdom from disability. I explained to my friend yesterday, who was expressing pity for my complex health issues, that I don't want to be anything else. I like this wisdom.

When I say doctors are useless dummies I mean tonight.

I had surgery Wednesday - two organs removed - and two days later I was in crazy pain but only on one side, not responding to meds. Couldn’t walk.

Went to the triage at the hospital and they called… 1/ Physical therapy to teach me exercises???? I could not move and just had surgery and was in screaming pain.

I looked at them like they were crazy and they started making like I was a bad belligerent patient

When the PT came, I asked her if I could film the convo… 2/

I wish doctors would drop this and acknowledge that they lost. We diagnose each other better than you do.

A very common example: for seven years I had near daily migraine triggered by environment esp chemicals. I couldn’t eat much. And I reacted badly to all medications. 1/

https://twitter.com/radicalmedico/status/1775104417378836942

I saw “top migraine specialists” in multiple cities. I went in patient at a migraine hospital. Nobody helped me or sought a deeper explanation.

I followed Facebook communities for various chronic illnesses looking for an explanation. I landed in groups for mast cell disease 2/

For #LongCovidAwarenessDay I’ll reconfirm my commitment to the position that 95% or more of doctors stink and we need to overthrow the system towards a patient-led model And any doctor who thinks that’s an overstatement isn’t on the side of patients

When the vaccines for Covid first emerged, disabled people were having a different conversation than the rest of you. You believed Biden and took off your masks.

We were 1) looking at countries like Israel, where vaccination was widespread and disease was still rampant… 2) We were experiencing drastic side effects to the new (undertested) technology and noticed that the Biden admin was giving 10 days off for vaccine recovery…. For a reason…

🧵

I think @jonfavs and others don't understand. THIS is how Long Covid happens in the vast majority of cases (including mine):

1. Someone has a relatively mild infection, is not hospitalized, feels "normal" in a couple of weeks, at most. 2. They get back to their routine - moderate exertion at home and work, exercise, etc.

3. A few weeks or so later, they suddenly feel some kind of pain/weakness/dizziness upon exertion. They push through or rest. It doesn't matter.

4. The next day, they are immobilized.

In a new article for @FAIRmediawatch, I look closely at how the @baltimoresun played a key role in helping Baltimore police cover up what really happened to Freddie Gray.

The Sun marginalized and ultimately erased witness accounts..1/

fair.org/home/the-balti… This article draws a through-line from David Simon's legacy of embedding himself in BPD homicide to the Sun's coverage of the Freddie Gray case.

iThe Sun invested a multi-media budget in interactive timelines and videos that supported BPD's claims. 2/
fair.org/home/the-balti…

Transit purists caught in wildfire smoke can maybe think about if you expect disabled folks, asthmatics etc to wait outside for buses, no problem.

And what about when the wildfires approach your homes? Wait outside for public escape vehicles?? Now’s a good time to put yourselves in the shoes of people who talk about cars as necessity and reconsider how sustainability prepares for human survival

The CVS near me is no longer offering a PCR test. Rapid tests cost $70.

Without a positive test, you can’t get Paxlovid.

I can’t imagine worse people running this country And there are no county sites within an hour from me

Many of my relationships fell apart last year, because I wanted people to care more about Covid, masks, disability, my health, etc. But I wonder what their takes would be on what happened. They’re mostly social activists. I doubt they would admit this. Kind of curious TBH. I’ve stopped pushing these issues btw, but I also don’t really befriend nondisabled people anymore. You all scare me

It’s #WorldMEDay! Myalgic Encephalopathy was defined as a prolonged illness after an infection. It’s defining feature is an inability to exercise or otherwise do a lot w/o major crashes lasting days or weeks. It’s also known as “chronic fatigue syndrome” but that name sucks! 1/ “Fatigue” is something we all suffer but “fatigue” from ME is different: it involves lack of blood flow to the brain- what happens to dying people. It isn’t relieved by sleep.

The illness is finally getting attention with hundreds of millions newly suffering post-Covid. 2/

I don’t know one disabled advocate that didn’t lose most of their nondisabled allies in 2022. It was a profound historical moment in our movement and the seeds of widespread fascism others don’t want to see. We faced not only abandonment by nondisabled allies but ramped up targeted campaigns against us, with all the ableism is a punchline discourse and masks are policing.