Ruth Rotschopf

34 year old local insane person. Currently programming and designing an astrology chart engine.

[Ruth Rotschopf @RotschopfR]

Just in case you think detransition is a super straightforward thing:

[Ruth Rotschopf @RotschopfR]

Dolly Parton always made a lot of sense to me.

I also had to get ahead of the jokes about my chest.

I worked so hard to get ahead of accusations that I was secretly a man that I tried to become a man.

[Ruth Rotschopf @RotschopfR]

@hexprax @fededambri @DanteTheGoose @basedtakemaker Yeah I’m agreeing this is wild.

[Ruth Rotschopf @RotschopfR]

@hexprax @DanteTheGoose @basedtakemaker Yeah this sounds bad I agree

[Ruth Rotschopf @RotschopfR]

@hexprax @DanteTheGoose @basedtakemaker That was intended to open discussion to you elaborating on your opinion but ok :)

[Ruth Rotschopf @RotschopfR]

@hexprax @DanteTheGoose @basedtakemaker I still have no idea of the facts on this as a story but I am 99% sure you get in trouble for NOT handing that over

[Ruth Rotschopf @RotschopfR]

@froglet80 Same keep me posteddddd

[Jack | amatica health @JackHadfield14]

A brief history of how ME/CFS ended up stigmatised and underfunded for decades. It wasn't an accident.

In 1970, two psychiatrists reviewed the case notes from the 1955 Royal Free Hospital outbreak in London and concluded it was mass hysteria. They didn't interview a single patient, but the idea that ME was psychological became the default view in medicine from then on.

In the UK, psychiatrists Simon Wessely, Michael Sharpe and Peter White developed this into the "illness beliefs" model, where a virus might trigger the illness but deconditioning and unhelpful beliefs keep people sick. They had huge influence over funding and policy, sitting on MRC panels and advising NICE and the DWP, and Sharpe and White also advised disability insurers. Much of the UK's ME research funding went into their trials, and their diagnostic criteria only required six months of fatigue, so the trials were full of people who didn't have ME.

The largest was PACE, which cost £5M and was published in 2011 as proof that CBT and graded exercise worked. It became the basis for NHS treatment. PACE had disingenuously loosened its recovery criteria partway through the trial, but still claimed success. A patient, Alem Matthees, took them to tribunal and got the data released in 2016. Under the original criteria, recovery fell from 22% to around 7%, and there was little change on objective measures like walking distance or return to work. CBT and graded exercise didn't work. NICE didn't remove graded exercise until 2021.

In the US, the CDC dismissed the 1984 Lake Tahoe outbreak, named the illness "chronic fatigue syndrome" in 1988, and the media called it "yuppie flu." In the late 90s, auditors found that of around $23M Congress gave the CDC for CFS research, about $13M had been quietly diverted to other programs and misreported. The NIH then spent roughly $ 5-6M a year on ME/CFS for decades, some of which also went to CBT, exercise and psychological research, and a chunk to university overheads, making it one of the lowest-funded diseases relative to how many people it affects. The CDC recommended CBT and graded exercise until 2017.

Most of Europe either followed the UK model or ignored the disease entirely. Germany did both, treating it as psychosomatic while barely funding research.

Long COVID has started to change this, because millions of previously healthy people developed the same illness at the same time and it became much harder to dismiss. Germany has now committed €500M over ten years, and biomedical research is consistently finding immune, neurological and autoantibody changes in ME/CFS patients.

All psychological intervention studies failed and when we finally started looking at physiological mechanisms, we have found hundreds of alterations. The psychiatrists responsible for the history of ME have millions of deaths on their hands and are largely to blame for the modern stigmatisation of patients. Thankfully that won’t continue much longer, I expect we will finally have breakthroughs in the next years now the shift is made.

[Ruth Rotschopf @RotschopfR]

YMMV bc nothing I have is curable, but treatment access has changed a lot for me. If the treatment isn’t there, if you emotionally spiral…it’s more likely that commiserating with others is not what is making you the most ill.

[Ruth Rotschopf @RotschopfR]

I mean this is the correct take. Def not a topic where we get anywhere in normal-tweet-length.

Best to take your own journey on it.

I had the best results doing this:

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

Let me deconstruct this...
🧠 Getting a new diagnosis (POTS, diabetes, lupus) can be anxiety-provoking. If it you're very anxious about your illness, then yes, it's best to stay away from internet, online or in-person support groups, etc.

🧠 It's also NOT TRUE that people in support groups are obsessed with being sick forever. I've been seeing patients with POTS and comorbidities for 20 years (yes, date that 😂), and I have yet to meet one patient who didn't want to get better.

🧠 So @aladyvanished's neurologist may have been correct to advise her patient not to get involved in any online illness-related activities IF that patient had significant anxiety over illness. The neurologist was also incorrect to paint patient support groups in a negative light. Patient support groups can be an amazing resource of information, friendships and advocacy.

🧠 If you're a physician who doesn't know how to effectively communicate with your patients with complex chronic disorders, read our paper with @njsmyth on specific things to say and not to say to your patients.

https://t.co/pYWtabdYRw

[Ruth Rotschopf @RotschopfR]

digging and cataloging and comparing and engaging with the healthcare I’m so lucky to now have.

[Ruth Rotschopf @RotschopfR]

@vesal1u2 @ProofofMaro We can’t have them get sad!! Idk I kinda feel for whoever would have to surveil me, I hope I’m not boring them to death

[maro @ProofofMaro]

Everyone is a cam girl in the surveillance state

[Ruth Rotschopf @RotschopfR]

Yes

[ava 🌞 @moonsoultarot]

If you’re on your period during this full moon you are a witch

[Ruth Rotschopf @RotschopfR]

Shit, I wish I could gofundme for some boobs.

[Ruth Rotschopf @RotschopfR]

Dolly Parton always made a lot of sense to me.

I also had to get ahead of the jokes about my chest.

I worked so hard to get ahead of accusations that I was secretly a man that I tried to become a man.

[Ruth Rotschopf @RotschopfR]

Plot twist again:

But she’s the Republican who never came out. She’s the one who was older than me, weird at me, and wanted me to live in her and her husband’s basement forever.

Find anything here that makes any sense to any cohesive popular narrative and I’ll bake you a cake.

[Ruth Rotschopf @RotschopfR]

Same and the owls acting weird

[🪩 @bambinasalina]

is a natural disaster bout to happen soon or something I’ve been running into skunks and coyotes nonstop in the city of los angeles like real life city no woods this not even their habitat the trees and them are that way 👉🏾

[diva @divaagurlxw]

I fucking love people who become more themselves with age. Stranger taste. Clearer boundaries. Louder laugh. Less interest in impressing random people. Watching somebody slowly stop auditioning for the world is fucking beautiful.