I’m not a creative type, but if I were to do some sort of awareness video for ME, I think I’d title it “Lucky” and record people saying what things they feel lucky to be able to do. Because ME is so bad, that we end up couching every complaint with “but I’m lucky I can still XYZ”
Since everyone is Anne Hathaway-posting, I just really wanted to jump in to tell you she starred in a movie in 2023 where she's married to Peter Dinklage and he cheats on her with a tugboat captain (Marisa Tomei) then writes an opera about it.
It did not do well on Rotten Tomatoes.
Things that our healthcare system needs to do the MOMENT someone gets diagnosed with ME/CFS (if we had a competent/functional healthcare system):
1) Reflex testing for comorbidities including POTS, MCAS, CCI, etc.
2) Provide them with a chart showing which treatment options are reported to have the most positive risk/reward profile as reported by the patients, and work with the patient on which treatment options make the most sense for them. The era of dumping patients out the door and make them swim for themselves needs to end.
3) Microdosing needs to be new standard of care for all new pharmaceuticals/supplements trialed.
4) The doctor should personally be speaking with family members (and coworkers in mild cases) to inform them how to accommodate and care for someone with ME/CFS.
5) A holistic doctor should also work with them on lifestyle changes, including dietary changes, blue light filter glasses, sauna/RLT/HBOT, identifying/eliminating environmental triggers, non-restrictive clothing, etc.
6) For those that are mild/improving, there should be a government program to help partner them with remote/accessible work options.
7) An information binder/booklet should be provided to them that include all relevant information, including most notable scientific publications on the disease in the last 5 years, and a collection of other patient stories (both from those who entered remission and those who haven’t).
8) Access to concierge that can help facilitate medical appointments, disability applications, legal assistance, housing help, etc.
And that’s just to start. There’s no reason every new patient has to go through hell figuring out what their illness is from square one every time. We can dramatically improve patient outcomes just by preventing the things that have made patients permanently worse.
Meta used AI to target workers with medical conditions for layoffs, according to a new lawsuit.
Twenty-six former Meta employees are suing, accusing the company of using AI that disproportionately targeted people with disabilities or workers who took medical leave in selecting people for mass layoffs.
https://t.co/iMKXjhkzV1
Why does Albanese get these big, politically sensitive appointments so wrong - Paul Brereton at the NACC, Segal for the Antisemitism Envoy? Such important jobs, disastrously mishandled by the appointees!
You know, I love kids. I'll defend kids crying on airplanes and melting down in restaurants. I respect parents who are doing their best.
But tonight at dinner, I encountered a toddler with a kazoo, and let me tell you, we all have limits.
It took me a day of research to find out Stan Laurel won a garden contest in 1935 and joked about growing a potato salad. AI had no clue. Less than 24 hours after I published the results of my research on Substack, AI is now confidently using my work as its own.
Heat deaths are the only thing that are routinely reported against the backdrop of people having fun splashing about in a river, aren't they?
Imagine if road deaths were reported with a backdrop of Formula 1 footage?
2027 university fees were announced today. Next year an arts degree will cost $54 000, a combined degree $90 000.
The Job-Ready Graduates scheme doubled the cost of arts, law, finance and economics degrees.
It's now been in place longer under Anthony Albanese than Scott Morrison.
It's been described as the worst thing ever to happen to HECS.
It has contributed to a cost-of-learning crisis which is preventing graduates from buying homes and starting families.
The Job-Ready Graduates Scheme must go.
https://t.co/sKibzyNUhk
Karl Stefanovic, Kyle Sandilands, Dave Hughes all magically begin to support Pauline Hanson, burning bridges from their old income. What dark money is paying their new income so it can buy our elections? Rage for the machine #auspol