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29

Jul

I haven’t gratuitously Cumberbatched in a while.

(Source: estherlune)

28

Jul

Beware of marketing wolves in medical research sheep’s clothing…

I’ve banged on a bit about having Ehlers Danlos Syndrome. I don’t think it’s a truly “rare” disease so much as it is under or improperly diagnosed. That said, it still has the rare classification, and not many people who understand and/or treat it.

Anyone with this kind of condition - no real treatment or cure - it leaves you looking in any and all directions for help. I’m a regular medical guineapig - I will try anything, and have tried myriad drugs, diets, and some pretty invasive and controversial alternative therapies.

I’m also pretty familiar with the body of research and current studies going on - I am a policy analyst by trade. We’re lucky in Canada - there are huge rules that govern anything you want to call ‘medical research’.

So it was with some consternation that a “study” on my disease hit my radar - one that talked in almost magical terms about the amayyyyyyzing treatment they want you to sign up for them to “research”. And all my little WARNING! bells went off. Because part of my job is to look for bad research. And there is a lot of it out there.

With that, I wanted to arm my fellow chronically awesome people on how to spot a predatory study.

1) It reads like an ad.

Studies are dead boring. “Hospital seeks diabetes patients for treatment involving dietary control” is about as fancy as it gets. If it starts talking in glowing words and has lovely bios and praise of the researchers - it’s not a study, it’s a sales pitch.

And no genuine research ever promises results or any outcome. If it says it’s going to help you, it’s not for real.

2) It makes no mention of an ethics board

Medical studies - real ones - have very strict ethical guidelines over how research is conducted and studies pass through review boards first. Hospitals have arms length approval processes to protect the patient and the integrity/accuracy of the work, as well as patient privacy.

3) The treatment has a funky name or trademark

You get the TM and to make a cool acronym of the treatment protocol *after* you prove it works, have been peer reviewed and published… not before.

So, if you see an ad with any of that language - red flag up. It might say “research” but it’s just trying to sell you hope when you’re down, and that is what makes me the angriest.

And that’s what makes them predatory.

Stay safe, my spoonies…

Gentle, warm hugs to you all.

fitzroythecat:

Da ceiling is kinda interesting tonight.

fitzroythecat:

Da ceiling is kinda interesting tonight.

27

Jul

jandillmann:

Knit one row a day for a year, matching the yarn color to the color of the sky that day.

jandillmann:

Knit one row a day for a year, matching the yarn color to the color of the sky that day.

26

Jul

disneyvillainsforjustice:

-teesa-:

7.23.14

George Takei describes the moment when he and his family were sent to an internment camp.

"Another scene I remember now as an adult is every morning at school we started the day with the Pledge of Allegiance to the flag…there was the American flag flying over the camp but I could also see the barbed wire fence and the sentry towers pointing at us from my schoolhouse window as I recited the words ‘With liberty and justice for all’." - George Takei, The Daily Show (July 24, 2014). 

Full Episode (apologies, The Daily Show website does not have the best video player). 

To Be Takei documentary official website. 

- Mod Dawes Sr. 

24

Jul

My inbox is A TOTAL MESS and I’m sorry

If you’ve written and I haven’t gotten back to you… I can’t tell anymore what I answered and what I didn’t.

So this is sort of a PSA to say I got your messages and you’re all just the nicest people and thank you for the love. Some days I really, really need it.

xoxo

Good Mornin, Dash

a-spoon-is-born:

I see you’re waking up. Come on over and have a cuppa, friend.

image

21

Jul

wellplanned-architecture:

CC4441 | Tomokazu Hayakawa Architects. Japan

I had a dream about living in a community made of architecturally adapted shipping containers and it was quite beautiful.

20

Jul

sebadasstian-stan:

[x]

more synchronized catting

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