The Real ME 🏴👩🦽➡️♿️ 👩🦼🇵🇸
@therealmecfs.bsky.social
Chronically ill & disabled person with lots of personal opinions, who sometimes likes a hat. Occasionally an advocate for PwME, gamer and proudly on the Autism spectrum. I’ve low tolerance for ignorance and assholery so if you come for a fight, expect one.
Reposted by The Real ME 🏴👩🦽➡️♿️ 👩🦼🇵🇸
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
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
May 16, 2025 at 12:48 PM
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
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
May 6, 2025 at 4:58 PM
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?
Will you guys join me in writing to the MRC, Lucy Chappell and others?
May 4, 2025 at 3:43 PM
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?
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
#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
crowdfund.berkeley.edu/project/46120
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!
crowdfund.berkeley.edu
May 2, 2025 at 11:00 AM
@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
#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
crowdfund.berkeley.edu/project/46120
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!
crowdfund.berkeley.edu
May 2, 2025 at 10:57 AM
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
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. ❤️
May 2, 2025 at 10:39 AM
@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. ❤️
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
March 17, 2025 at 12:36 PM
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
Reposted by The Real ME 🏴👩🦽➡️♿️ 👩🦼🇵🇸
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
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
March 17, 2025 at 11:53 AM
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
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
MACKLEMORE - fucked up (official video)
YouTube video by Macklemore
youtu.be
February 16, 2025 at 11:53 AM
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...
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,...
action.goodlawproject.org
February 16, 2025 at 10:38 AM
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.
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
February 10, 2025 at 11:55 AM
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
January 8, 2025 at 10:47 AM
@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.
An #MECFS patient does not need professional help to move more. An #MECFS patient needs professional help to explain to friends and family that they need to move less and rest until pharmacological interventions for low ATP, T cell exhaustion and mitochondrial dysfunction are found
#MillionsMissing
#MillionsMissing
December 22, 2024 at 11:01 AM
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.
December 20, 2024 at 11:45 AM
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.
Racism towards a group doesn’t justify trying to claim a country that you have no real connection to. Americans who turn up in Scotland and Ireland and declare just how Scottish/Irish they are because some ancestor they never met once poked a Scottish highland terrier are insufferable as fuck.
December 18, 2024 at 11:24 PM
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.
December 18, 2024 at 11:22 AM
Pathetic.
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...
Cabinet Secretary to step down on health grounds
Simon Case has been undergoing medical treatment for 18 months.
www.bbc.com
September 30, 2024 at 4:18 PM
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! ❤️
August 21, 2024 at 7:49 AM
@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. 💙
August 21, 2024 at 7:37 AM
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. 💙
July 25, 2024 at 1:33 PM
@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
July 10, 2024 at 11:38 PM
@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
June 8, 2024 at 10:20 AM
@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.
May 30, 2024 at 12:13 PM
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
May 21, 2024 at 9:42 AM
Long Covid course is ‘exploiting people’, says ex-GB rower. Absolutely brilliant piece pointing out the nonsense that is the Lighting Process