The Real ME 🏴󠁧󠁢󠁳󠁣󠁴󠁿👩‍🦽‍➡️♿️ 👩‍🦼🇵🇸

A photo of a group of twelve people standing outside the Scottish Parliament at the Millions Missing Scotland 2025 demonstration. It includes ME Action Scotland volunteers, Stuart Murdoch and other people affected by ME, Ben Macpherson MSP, the Founder of Inclusive New Normal and a Trustee of the ME Association.

A photo of the Millions Missing Scotland rally outside the Scottish Parliament. It's a sunny day and a crowd of people are listening to Stuart Murdoch speak and clapping. Some are standing, some are in wheelchairs and some are sitting in camping chairs. Lots of people are wearing red ME Action t shirts.

A photo of a crowd of people listening to ME Action Scotland volunteer Jo Bruce speak at the Millions Missing demonstration outside the Scottish Parliament. Jo is in a wheelchair holding a piece of paper and a microphone. People are standing and sitting to listen, they include ME Action volunteers, members of the public and MSPs. An ME Action Scotland banner can also be seen in the background.

A photo of an ME Action Scotland volunteer from behind listening to another who is sat down speaking into a microphone and holding a clipboard. The person speaking in the background is in soft focus and the volunteer listening in the foreground is in focus, picking out the ME Action logo on the back of their t shirt.

This year, #MillionsMissing Scotland raised a red alert for ME 🚨

Our @parliament.scot rally put pressure on the Scottish Government to set out how they'll make pledged funding for ME specialist support a reality.

19 MSPs joined us & 6 addressed the crowd. Listed in thread ⬇️

📸 credit: Noel Fenech

15 greetings cards, addressed and stamped ready for posting. They are spread in a fan shape across a white sheet.

Only a couple extra days than I thought 🤦‍♀️ still, they’ll be there even closer to the 12th! #millionsmissing #sos #redalert #fundtheplan

It took a while but they are written (personalised introductions & signed) and ready to go! X

I’m sending these cards to the people on the list and my local reps for #millionsmissing this year #fundtheplan @meactnet.bsky.social @meactionscotland.bsky.social @meactionuk.bsky.social

Will you guys join me in writing to the MRC, Lucy Chappell and others?

@davetuller1.bsky.social We won’t have him forever, when he retires we won’t have another like him. Please get your wallets and purses out.

#ME #Millionsmissing #chronicillness #longcovid #MECFS #myalgicencephalomylitis

David Tuller's Trial by Error Spring 2025 Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Spring 2025. Your gift will make a difference!

With everything he has done and still does & the volume of people with ME, how the hell is @davetuller1.bsky.social ‘s crowdfunding only at only 68% this round? This is shocking to me. Without David’s take down of PACE we wouldn’t have the recognition we get.

crowdfund.berkeley.edu/project/46120

I just watched it this morning, absolutely incredible and such important work Anil. Thank you so much for expending your energy in this way. I’m going to send it through to my GP and ask them to watch it. ❤️

@exceedhergrasp1.bsky.social I just watched your interview with DT, fantastic, your rage was palpable. I know always conducted yourself super professionally but I could feel that frustration. It’s a scary time. I could listen to you speak in these topics all day. ❤️

Thank you from Scotland! One of those projects is important ME Research, that could help people like me all over the world.

3/3 #MECFS #Chronicillness #longcovid I did search Google and YouTube but it’s a minefield of wellness crap. Thanks in advance. Jo. X

2/3 explanation of it on @cortjohnson.bsky.social brilliant Health Rising website but I don’t fully understand the descriptions of exercises and breathing. Can anyone signpost me to a video or pictures of the breathing and exercises and how long to do things for? #MECFS #Chronicillness #longcovid

1/3 #MECFS #Chronicillness #longcovid calling all MEEPs, I need your help. I’ve been doing a little bit better on Amantadine, to the point where I would like to try @putrinolab.bsky.social modified Levine protocol for ME in the hopes that I could one day go for a walk again. I found a great

2/2 lung cancer by the trigger for their lung cancer, we don’t say Asbestos Lung Cancer and Smoking Ling Cancer do we? No! I just can’t get past why this has been allowed to happen. If they have PEM they have ME.

1/2 The stigma attached to ME is largely why people with post Covid ME deny it and use the unnecessary new name of Long Covid. It’s clear that even though we predicted it, they have wanted to separate themselves from us from the start. And the ME orgs have all let them. We don’t separate people with

KLAXON 🚨: Indie SAGE has come out of retirement to release a new short report standing up for diversity, equity and inclusion (DEI) in the sciences!

DEI is not just the right thing to do, it *improves* the quality of the science. Please read and share.

independentsage.org/wp-content/u...

1/2

YouTube video by Macklemore MACKLEMORE - fucked up (official video)

youtu.be/sn9EKC9nqU4

I suddenly find myself a massive Macklemore fan, who knew?!

Ofcom, stop GB News broadcasting hate *CW: Homophobia, hate speech GB News is no stranger to spouting hatred and toxic lies. They take pride in it, and pretend the rules don’t matter. But they do. And they must be enforced. On 22 January,...

On 22 January, GB News presenter Josh Howie repeated a homophobic slur linking the LGBTQ+ community to paedophilia. This is offensive, wrong and unlawful. Join me and @GoodLawProject to file a complaint to Ofcom :point_down: action.goodlawproject.org/ofcom-stop-g...

Significant revelations Significant revelations from a German investigative journalist In a detailed article in German, Martin Rücker, part of RiffReporter, presented some extraordinary findings from his investigation of the...

www.change.org/p/cochrane-w... I knew Garner’s paw prints were all over this. He sits on one of the boards at Cochrane.

Yeah she’s not on here yet I don’t think.

@davetuller1.bsky.social @exceedhergrasp1.bsky.social maybe we can use this on the BPS brigade! I’m thinking Crawley is a huge paper mill.

Cheers to that.

Huh? You’ve lost me, is he into the Joker or something? (love your profile pic btw)

I’m sort of one of those, not that I left but I’m just not on socials as much, some might say that’s a good thing but I miss the community. I’m endeavouring to visit more often because I feel like we are going to need each other more than ever over these terrifying next four years. Solidarity. 💙

💯 saddened and terrified tbh and I don’t even live in the states. The decisions he’s made will affect the whole world though.

I think both our governments have long been dumbing down successive generations with poor schools and less demanding exams but this is on another level. I’m genuinely afraid especially for the environment. It plays right into Musks idea that humanity will only survive if we go off-world. 😔

Yes it does, they can’t even print it in the newspaper, so in one they have the picture with the gesture covered up or edited to look like it had been torn in half. It’s chilling it really is.

Who’s belief in a future off world civilisation and obsession with power has addled his mind. He knew exactly what he was doing. As an autistic person myself I’m disgusted at the suggestion that autism had anything to do with it, I can’t believe that is even mooted as an excuse.

The BBC’d neutral wording in reporting this is unacceptable. In the same way it’s reporting on Gaza has been. There are some things that are so intentional and so obvious that one must report them as such. Musk repeatedly makes his intentions very clear, he is a hard right extremist.

Me too and all that shows me is that these people don’t understand autism at all and will excuse anything these evil pricks do.

@1goodtern.bsky.social that’s you she’s talking about. So many of us rate you as a reliable source. ☺️