The Real ME 🏴󠁧󠁢󠁳󠁣󠁴󠁿👩‍🦽‍➡️♿️ 👩‍🦼🇵🇸

Hi all, this is a tentative return to socials. I found I was having two issues because of socials. There are usually a few of you who can relate. 1- addiction type habits 2-anger issues I can’t promise to stay but I do miss this wonderful community so very much and there is so much new science

Edited Clip from BBC inside science ME/CFS diary: Jo @therealmecfs.bsky.social talks through a week with #MECFS: showering once a week, rationing mental and physical energy, pacing carefully, and experiencing post-exertional malaise if she exceeds her limits.

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

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

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

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

@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. ❤️

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

youtu.be/sn9EKC9nqU4 I suddenly find myself a massive Macklemore fan, who knew?!

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...

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.

@exceedhergrasp1.bsky.social Jaime - are you safe where you are? I know Stanford is quite a bit north of LA but I also know sometimes you are based there too? Xxx

This. A million % this.

Exiting times in science this week. I know the Cochrane thing is a bummer but did anyone see the two great Blogs on Cort’s Website about the mitochondrial studies in Fibromyalgia and LC/ME? Possible treatments there too. I’m finding Amantadine pretty great but it’s not without problems.

Got into a big row about this with a load of bully troll Americans today. God, I’d forgotten about all the assholes on social media and why I’m naturally a misanthrope these days. How can you devote your life to helping groups of people but detest the vast majority of individuals? It’s a paradox.

Pathetic.

5139 signatures so far. I'm doing 'behind the scenes' wider work on this project but the community needs to show the depth of feeling on this issue with a lot more signatures. Keep it going please. We need this #NHS protocol for #SevereME. organise.network/actions/peti... #pwME

Oh my GOD! Just admit it’s ME or Long Covid for crissakes. Cabinet Secretary to step down on health grounds www.bbc.com/news/article...

@arisonsned.bsky.social so amazing to see you here! ❤️

It feels nice to see so many of my friends moving over here. It makes me feel like it might be safe to start posting again. I hope the reactionary, hyped up anger is gone. 💙

@exceedhergrasp1.bsky.social i know you are doing the WaPo thing right now, as I write, so I’m leaving this here for you to find later - to say. I know you will do fantastic. You’re the best. I hope you have a blast and then get to rest after. Much love and even more respect. 💙

@exceedhergrasp1.bsky.social just watched your presentation from May at the Neuroimmune conference. Chef’s kiss as usual. Xx

@exceedhergrasp1.bsky.social hi Jaime. Someone is asking me about vagus nerve stimulation and the science and if it’s any good and honestly I don’t know much about it as am focused on trying amantadine and antihistamine atm. Have you got anything I can read that’s legit? Xx

I really want to follow more great writers and scientists on Substack and am looking for recommendations.

Long Covid course is ‘exploiting people’, says ex-GB rower. Absolutely brilliant piece pointing out the nonsense that is the Lighting Process

It feels weird to be starting over but it also feels necessary.

@exceedhergrasp1.bsky.social hi, I already had an account but not really used it. I feel like twitter is changing the people who stayed there. X

I have written a mega-thread on Twitter as I still find it easier to use. x.com/therealmecfs... #MECFS

Going forward I think everyone with all disabilities and marginalised people and intersections of those people - we should all change our photos to that quote from Boris. That’s us he’s talking about. Me and you. And I cried in frustration when I saw it.

@naomidharvey.bsky.social you’re here! ❤️

One unexpected thing in my qualitative study w natural scientists (one-hour interviews) is how deeply, deeply sad the climate scientists are. They say things like "you have enough information from us, why won't anyone act?" -- the psychological distress these people are enduring is very great.

It's so nice to come here and feel like we have a safe space back to talk to our friends. 😊

Our little story made it to the Daily Record today. www.dailyrecord.co.uk/news/scottis...