Bettina Ryll
bettinaryll.bsky.social
Bettina Ryll
@bettinaryll.bsky.social
Melanoma patient advocate. Special interest: advanced disease (my husband died of it, so it's personal). Founder of the Melanoma Patient Network Europe. MD/ PhD
snap :)
March 11, 2025 at 8:38 PM
To my knowledge, there are 2 vaccines that leave scars- the vaccines against smallpox and tuberculosis, so not measles. In case of doubt, worth checking a titre or to get a boost if you can
March 11, 2025 at 8:37 PM
I am so sorry :( that's precisely why it's so important that everyone is vaccinated sufficiently...with MMR, we also know that 1 injection as a kid isn't sufficient as some people just don't develop enough protection (that's why we have now 2)
March 11, 2025 at 7:20 PM
It's a bit more sinister than that though. You take away independent essential protection like healthcare, people become totally dependent on their employers to provide for that.....meaning they are much more liking to put up with bad working conditions and abuse.
March 11, 2025 at 6:38 PM
🤞🤞🤞 for great antibody titres. What folks don't get is the importance of herd immunity, especially for diseases like measles (which is why some nutcases now seem to think it's not a serious disease).
March 11, 2025 at 6:31 PM
Please be safe. Measles remain one of the big killers of children in developing countries but can be dangerous for adults, too....
March 11, 2025 at 6:24 PM
Which is precisely why having a phone book of potentials isn't the way to go- it's understanding whack-o-mole that matters
November 30, 2024 at 6:41 PM
Cancer doesn't 'do' so much- all it does is uncontrolled growth and metastasis- but it can use lots of different pathways to achieve that (so there will be no single magic switch to turn this all off unfortunately)- so beating it at its own game is IMO the way to go
November 30, 2024 at 6:39 PM
I actually think we have to get pro at playing 'wack-o-mole'. If one looks at evolution- what makes us different from fruitflies aren't our genes. It's how we *use* those genes. Cancer is all about loss of control- it's a highly sophisticated system gone wild....
November 30, 2024 at 6:37 PM
COI are a REAL problem. Nevertheless, I'd worry about any submission of the grand total of about 450 concerning an issue that affects 13 Million women in Australia....
November 22, 2024 at 7:45 PM
And..... 🤷‍♀️. In circumstances where *believing in stuff* suddenly trumps the scientific method, anyone adhering to the latter suddenly becomes 'politicised'- and rightfully so. As surely we don't want to go back to the Dark Ages?!!
November 22, 2024 at 7:20 PM
Perfectly put. From a (narrow) scientific perspective, one thing might make sense but then, there are a gazillion other considerations, scientific and other- that's what we got politicians for after all.
November 22, 2024 at 7:12 PM
Because.....Science *is* political? Wanting to know and understand happens to irritate those who prefer citizens uneducated and gullible. And then, certain scientific findings have huge impacted societies- we can't just wash our hands of it 'it was just science'- we are citizens, too.
November 22, 2024 at 7:10 PM
That's why I actually think that other scientific fields- like evolution and ecology- can be really informative as they are used to dealing with temporal phenomena and multiple actors in a complex system- very much like cancer.
November 22, 2024 at 6:54 PM
It's actually my to-go-to example why getting the formulation of the original research hypothesis right is so fundamental and something patient advocates should focus on- it sets you on an entirely different path experiment-design wise and comes with very different clinical relevance
November 22, 2024 at 6:51 PM
Patients need an answer to the question *which is the mechanism of resistance that when tackled successfully will save my life*. What we've had instead were phone books full of *possible* ways of resistance- but what do you a do when a patient suddenly has 15 of those?
November 22, 2024 at 6:48 PM
Please do never trust cell cultures or even animal models for truly solving resistance to therapy- we've had wagonloads of that in #Melanoma and it was (is) a disaster for patients
November 22, 2024 at 6:46 PM
I don't think we'll ever have enough of these though- so anyone with a science background should do his or her best to become REALLY good at it....
November 16, 2024 at 9:33 PM