Madeleine ThriftVIP®

Very slowly evolving #ThriftVIP as X has become a place for community and information surrounding the disease I live with #MyalgicEncephalomyelitis 1/2

Today Today I’m flying low & I’m not saying a word I’m letting all the voodoos of ambition sleep. The world goes on as it must, the bees in the garden rumbling a little, the fish leaping, the gnats getting eaten. And so forth. But I’m taking the day off. Quiet as a feather. I hardly move though really I’m travelling a terrific distance. Stillness. One of the doors into the temple. Mary Oliver

What's wrong with the PACE trial? It's easier to ask what's *not* wrong with the PACE trial. Write a list of every single thing researchers can do in an RCT to invalidate their results and expose patients to potential harms. That's the PACE trial. It's a full bingo card.

DYLAN LAW FOR HACKNEY DEPUTY MAYOR

If you’re an MD or a nurse, or work in healthcare of any kind, please 🙏🏻 watch this video to hear about what #MyalgicEncephalomyelitis does to people from other doctors who have developed the disease in recent years. It isn’t what Med School told you it was #MedTwitter

@caenhillcc Happy Saturday to you 🌟

It’s the toast run with sheep Squirrel, Bumblebee, Patch & Frisbee

My depression’s severe & dark just now but talking to folk here gives me a sense of belonging which I really need to try to hold on to. Making this photo helped my brain & looking for the tiny silver owl hidden in it will help yours-the botanical fractals will dial ⬇️ stress & your brain will release dopamine if you find🦉:

@silverpebble ALT text : supposed to say gorse bush (it put horse). I’m sure this is a gorse 💛

@silverpebble And a little something I photographed during my one day out this week…

@MEFoggyDog @chydorina @jpc101 Extra note: A bit like the buddy system that’s been recently employed for those hospitalised without loved ones/family. Anyway we can dream. But sometimes dreams come true. Sad that this is now a dream… my dreams used to be so much bigger!

@MEFoggyDog @chydorina @jpc101 4/ …and the consequences of being admitted to a healthcare setting where there is no knowledge or correct guidance adhered to. End. Sigh 😔

We need a MECFS organization that is actually an acute-care research hospital. A place where there are doctors and nurses and associated medically trained staff. Patients would be airlifted there and cared for through the 'very-severe' stages. Once survival would be possible back at home - with proper ongoing distance care - they would be discharged. It would double as an 'extreme cases' MECFS research center - and it is from these extreme cases where the biggest breakthroughs will be made. Personally when I think of what type of advocacy organization I would want to financially support - this is what it would be. I believe many of the people that have decided to die (or those that died in regular hospitals from mistreatment) would not have if a place like this was available. If I was not sick myself this is what I would start. An actual global medical/research facility for the most severe cases.

@chydorina My idea more for obtaining lawyers, advocates and buddy systems via a tailored and specific agency of experts … one can dream but if resources were pooled better by charities it just might be possible

@chydorina Been thinking along the lines of this for a while now, but in terms of an agency. I’ll do the post I’ve been saving soon… had it saved for a while for when I’ve done the other stuff I need to do atm! £needs to go somewhere that will actually put 🥾s on the ground help & support

@marinaflares @Naomi_D_Harvey Thanks so much for sharing … added to my never ending list! 🫂

@ThriftVIP @Naomi_D_Harvey glucorx.co.uk/our-products/g… 2/2

Wow I wonder why I’ve never been tested for this? I wonder how many #pwME have?

I teach the fraudulent PACE trial as how not to conduct research in my research methods course. My students ask how this demonstrated slop got into and stays in a prestigious journal. Maybe someday I’ll have @TheLancet editors in as guest speakers to tell my students themselves.