ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long. There's a huge BUT coming ...🧵 www.theguardian.com/society/2025...

#ME #MEcfs #BPSNonsense iykyk

I started eating real food again in 2024!…I have now stopped the Peptamen food formula completely, and get all my calories from real food!...And I want to tell you because I want you to hear this story!...what will 2025 bring? #MECFS New post on my blog: www.whitneydafoe.com/mecfs/?post=...

Happy Birthday! @kschnickelfritz.bsky.social Tried to post a Bitmoji but it wouldn’t let me. The gifs are crap. So here are a few emojis in their place 🎂🎁🎈🥳🎉👋💃

If social media's stressing you out just now (me too) then here's a gentle antidote: pause for a few seconds & focus on the details in my photo👇-your brain's very likely to release dopamine,lifting your mood due to the bright colours & is ikely to relax in response to seeing these botanical patterns

Think about this.. for a second. Doesn't take you much time to get it! Them? Eons.😉

Delighted to have joined the APPG ME and been appointed an officer. Too many people live with ME, with too little understanding, and inadequate care. It’s time to engage - I’m #ThereForME.

@rolypeck.bsky.social Thought you might enjoy this.

Petra, I can’t find you! Hope you get to see this. Happy Birthday 🥳 🎂🎈

@actionforme.bsky.social Please reconsider posting on X even if just for info and not interaction/discussion. So many people on there (including DecodeME participants) have not seen your research announcement today. #ME

1/2 🚨 SequenceME A groundbreaking partnership has launched today, bringing together experts from Action for ME, Oxford Nanopore Technologies & the University of Edinburgh. Read more 👇 www.actionforme.org.uk/news/sequenc... #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #MEResearch

Finally spent a garden Centre voucher I received last Christmas! Very happy with them 🥰

Hating yourself for things you can’t control will never make you better, it will only make you bitter.

Now is the time to make sure you have enough medication to see you through the Xmas period and/or arrange your repeat prescription in good time #ME #ChronicIllness #LC

My brain’s not well at all atm but small creative routines can help so I’m going to try to post a (hopefully dopamine-boosting) photo for you every day through till🎄. Some small wreaths bc I really like twiggy circles 🌿:

Smashing! 😊

🤣🤣🤣

Fantastic that this photography project by Jeremy Jeffs about ME is on display @wellcomecollection.bsky.social Hope lots of people see it. (Was meant to take part but wasn't well enough to have anyone here, and have been shielding also.) #pwME #MEcfs wellcomecollection.org/stories/livi...

👍

It’s time 😊

Buggered up my straw because I didn’t have my glasses on and I was trying to insert it into the QR code 🤦‍♀️🤣 🤓

The #ME Association, a national organisation, has been dominated by this man so long it's transformed into a mental health charity. ME is not a mental illness. I wasted months meeting MEA reps (Trustees & employees) pre inquest. 2/3 resigned after listening to me. thesicktimes.org/2024/11/22/a...

Treated myself to 2 new pairs of Snag tights. I always found tights to be uncomfortable and restricting but when I discovered Snag just before I got ill I was delighted. Soft, stretchy, they never droop or fall down. They last ages and wash well. Packed with care too 😍

#GBBO ready Jaffa cakes are small these days - they’re on a saucer!

#GBBO ready Jaffa cakes are small these days - they’re on a saucer!

ITVx have got an offer on this week. Their add-free premium service is £2 a month for 2 months - first week free. It then goes to £5.99 in Feb but you can cancel any time before that date. I’m giving it a go so I don’t have to endure ads plus I can download stuff. Nice for Xmas viewing 😊

Poor Nigel x

That time of year again. The Reith Lectures have begun on Radio 4 This year it’s about violence. Interesting so far 👍

I watched After The Party on Ch4 and very much enjoyed the great acting, especially little Walt. Once I understood the flashbacks to the party (seamlessly cut in so hard to notice at first which confused me a tad) it was great. Ending was a disappointment for me.

Make sure you’re following #ThereForME on our new social media accounts! You can find links here: linktr.ee/ThereForME#ThereForME #ComingSoon

😂

My new t-shirt from Qwertee

Just discovering this person. Catherine Vandome. Recovering, not recovered, using the Perrin technique. Her partner has ME too and trained under Perrin to be a practitioner because it helped him so much. Looks interesting. She’s a very engaging person. m.youtube.com/watch?v=qMJH...

@davet.bsky.social Haven’t listened - I just read the post and thought of you.

Early winter berry palette, for the possible dopamine it might trigger in your brain. The colour of spindle berries (bottom rightish) never seems quite real...

autoimmune disorders #autoimmune #immunesystem #chronicillness

You may think that neurological symptoms in #LongCovid are for old people, but it is the opposite. Young adults (18–44 years) and middle-aged (45–64 years) with mild acute #COVID cases (non-hospitalized), represent 90% of the cases of #NeuroCovid. Read here: onlinelibrary.wiley.com/doi/10.1002/...

Pass the Rennies! 😆 #SaturdayTreat

Neurologic Manifestations of Long COVID Disproportionately Affect Young and Middle-Age Adults onlinelibrary.wiley.com/doi/10.1002/... Interesting including because research suggests the onset of ME/CFS may more common in the young and middle-aged #LongCovid #PASC #MEcfs #CFS #PwME 1/

Hello there it’s here Storm Bert 🤣

Etymology of the day: to be ‘blowing a hoolie’ (or ‘hooley’) was probably inspired by the Orkney word ‘hoolan’, a howling gale, with a touch of the ‘hooley’ that is a very noisy party thrown in.

Dave brought Cadburys chocolate fingers. Apparently 4 is one portion

Weather like this makes me glad I don’t have to go out to work #SecondaryGain

Charge up your devices-appliances and find your torches in readiness for Storm Bert in case your power goes off. #StormBert

If you’re thinking of swapping energy suppliers, you could use this code and we’ll each get £50 credit! Win-win. 👍😊 Use this link to sign up to Octopus - share.octopus.energy/peach-boar-422

I joined when I became housebound. I was searching for somewhere to donate small amount of funds I had spare, seeing as I couldn’t pop a quid in a charity tin when out. It’s such a lovely charity.