And of course as soon as I post this then M.E happens. So here we are 2 months later, and it's finally ready. Not as gross as the title sounds, unless you are squeamish, or a Virgo. open.substack.com/pub/kirsties...

DECODE ME has published its results. Massive congratulations to @cgatist.bsky.social and team in Edinburgh. Let’s hope this is the start of a paradigm shift in how we view, research and treat this dreadful illness. www.decodeme.org.uk/initial-dna-...

🏴󠁧󠁢󠁳󠁣󠁴󠁿✊✨

Anti-Trump protestors on Sky News, "We should not be opening Scotland or the UK to somebody with Trump's background" "Trump is an abhorrent human being with no saving graces"

South Park is getting canceled after this lmao.

A necessary hard-hitting piece by @juliadoubleday.bsky.social If this is you, if you are still acting like it's a cold and getting offended by people who want to you to mask or test, well, all I can say is ignore this at your own peril. When you know, you know, & by then it's already too late

UK Government approach to #pwME - a suggested tagline for their Comms "Getting ready to get ready for the potential to explore getting ready to make a plan" Can add in "we are very clear" for extra emphasis

Getting ready to write a blog again: 📝 New topic (ish) 🏡 New home 🙄 Same sarcasm

Government released this today #pwME Leads with chronic fatigue Not one mention of PEM So to any journalists writing about this: ME/CFS is *not* about fatigue. It is a multisystemic condition with a constellation of symptoms of which fatigue is just one. www.gov.uk/government/n...

Enjoyed Heads of State. Silly, implausible, old-fashioned good guys beating the bad guys fun. And that's really not a spoiler if you have watched any 90s action movies...

Experience: I am the world champion of ‘doing nothing’

I can’t say definitively that it is, but MY GOD does it read that way.

Looking forward to the word "bawdy" trending everywhere tomorrow

Trump's doc has stated that apart from venous insufficiency all other blood tests are normal. So he probably does have Long Covid then 🙄

Apropos to nothing - venous insufficiency has been diagnosed in people with Long Covid...

A week in and sadly montelukast is not going great. Even a 5mg dose Worsening sinus headaches More difficult to control emotions That "unreality" feeling is back Feeling more anxious, worsening insomnia I really could cry 😭

"being in the middle ground or just wanting a cup of tea and a State that will support you with dignity when we are at our most vulnerable is okay. But I suppose that doesn’t make a good book" Brilliant piece from @longcovidadvoc.com 🔥

Miss Rachel continues to have more of a moral backbone than 99% of public figures

Very late to watching For All Mankind on Apple but loving it so far. Just the type of engaging character-driven show I need right now.

Waiting for the Prime day sale so can buy something that's price matched at John Lewis is my way of rebelling against the oligarchy today.

When the establishment punches down, it’s satire… When the marginalised punch up, it’s a threat This isn’t just insane hypocrisy, this is a system working exactly as designed Because it’s not about protecting us, the public …It’s about protecting power.

Ooh a new procedural starring Jensen Ackles? Yes please and thank you 🤩

Well, a whole year after going to my GP for help, I am being prescribed something for what has been reluctantly agreed as likely #MCAS symptoms. Starting a course of #montelukast today. Child size dose, just in case Shouldn't have to be this much of a battle

Yes, Gemini AI. You get it. Now spread the word! 📢 #pwME

Unsurprisingly I can't sleep. What is it about watching The Prodigy last thing that made that a reality...

1991 Sheffield Palais me may have literally just exploded with joy during the Prodigy's set. That was incredible.

Starting my summer reading list a bit late as part of @longcovidadvoc.com Pedantic Zebra book club. With musical guest 🎵 #pwME #chronicillness #disability

Summer reading @francesryan.bsky.social in the shade listening to Beck 😎 Ironic as when I saw Beck a few years ago promoter switched venue to standing only but wouldn't help me find a seat. As is often the case kindly human to rescue as security guy helped us out & sneaked me in a chair from the bar

And En Vogue! What is this, girl power day? I loved this group. Imagine how big they would have been if social media was a thing in the 90s. Huge!

Alanis at Glasto and it's that 90s rock chick girl crush all over again 😍

"Come the next general election, the accusation will not be that Starmer’s Labour cosied up to the Tories for power, but that they embodied them: their cruelty, their austerity and, ultimately, their failure." Thank you Frances. This needs to be said

Have all political parties just decided that we prefer salty memes to actual detailed policies based on facts and evidence?

It seems like The Green Party have decided their campaigning strategy is Reform style memes. No detailed data to back this up, no link to their own policies. Going to be harder on the Greens than anyone else as they are the closest party to my values, although with this approach? Not so much.

Thank you to my MP @joshdeanmp.bsky.social for taking a principled stand against the proposed PIP/disability benefit cuts. Your allyship is greatly appreciated and thank you for taking the time to respond with care and understanding to my concerns 🙏 #pwME #disability

This is so irresponsible by the Green Party. They say they are a party that wants to do politics differently instead they are doing terrible anxiety-inducing hit jobs like this instead of presenting the facts and their alternative vision. Must everyone race to the bottom by aping Reform?

Just listened to this Thoroughly recommend for anyone dealing with chronic infection or dealing with Alzheimer's, MS etc. A lot of dots connected, especially the body choosing to adapt the virus when can't clear it and what that means for our poor mitochondria! open.spotify.com/episode/3asb...

When I have more energy/mobility I will write more on this but for now I want to see how grateful I am for AI today. Specifically Gemini. Working with Gemini has helped me prepare for a stress-inducing medical appointment tomorrow. It is shaping up to be a powerful advocate /1

This is where I land too, i think.

Dealing with Future Pensions and HMRC about NI contributions is not something I recommend 1. When it's hot 2. With neuroinflammation Feel like I have just been in a Maths exam 😵

Had forgotten how much trying to stay cool takes it out of m-

As the Club World Cup kicks off under the threat of immigration crackdowns, @hebagowayed.bsky.social & @nickocchiuto.bsky.social write in The Guardian about how FIFA corruption has put Trump’s authoritarian agenda front and center.

When you're 54 and your mum puts a plaster on for you 🙂

In more name mispronunciations, my mum said she always wanted to call me Rachel. Or so I thought. Apparently it was actually Richelle. From the Rich part of Richard. As in Cliff. Richard. Never been so happy for the veto applied by my dad! 😄

Everything you need to know about the British voting public

Dad "Did you stay in one of those Airnobs?" No, but I will be calling Air BnB this from now on! 😄

Still no reply... @joshdeanmp.bsky.social

Oh marvellous. Leg pain has travelled to back and can't stand up straight after sitting or lying down. Spasming like mad. Relieved a bit with walking around so have to keep moving which is a tricky proposition when also need periods of rest... Another fun #ME #hEDS tightrope to walk!

So proud to add my name to this well-argued, reasoned response Thank you @longcovidadvoc.com #pwME #LongCovid

The framing of this 🙄 Nice white middle class dad from a good area so completely out of character meaning non white working class from not great area, it isn't? Because why DM? What inference are you trying to get us to make...?

Unable to put weight on my left leg without intense pain. Also whole of left side feels like it's much longer than the right. Clicking and crunching everywhere Thinking EDS flare or that I have found an inflammatory side effect of the caffeine hack I've been using for increasing gut motility...