New episode of Post-Exertional Mayonnaise podcast out today. We talk about managing fluctuations while living with ME and Chronic illness. Why not join us?

Just because we can’t be on the streets doesn’t mean we’re invisible. Take part in online actions if you can. #ME #Disabled #BenefitCuts

When you write lyrics to a song about PEM and desperately want to find melodies and hooks but you have PEM so can't pick up the guitar.

More need to know how bad it is for so many. Lives up ended yet few beneficial treatments. Prevention is key. Improve air quality, N95 and stay home if unwell. More money for research needed

New episode of Post-Exertional Mayonnaise podcast out now! We talk about toxic religion and spirituality in relation to #MyalgicE and chronic illness. Join us on YouTube or wherever you get podcasts!

Last night my son went to watch the GB basketball match and danced on camera like his life depended on it to win a basketball signed by the team. Wish I could have been there. FU ME.

New #ThereForME blog out today highlighting some of the community campaigning work going on for #ME and #LongCovid - from #FundThePlan to Long Covid Awareness Day. Read more and learn how you can get involved 👇 www.thereforme.uk/p/campaign-u...

New ME/chronic illness podcast episode out now! Join myself, @litsadremousis.bsky.social and @dovsz.bsky.social as we discuss life online with a chronic illness.

Recently watched The Traitors New Zealand. It's like the traitors on the cheap. No helicopters or speedboats and the competitors have to drive themselves places. Still, not bad!

Worth repeating: there is NOT an ounce of exaggeration in this. This illness is out of the charts. #GreatestMEdicalScandal

@talmandaniel.bsky.social you might be interested in sharing this in your ME community?

Jeremy Jeffs is a filmmaker and photographer whose experience of living with ME/CFS inspired him to talk to and photograph others with the same illness. wellcomecollection.org/stories/livi... Image is from free AMMES February 2025 e-newsletter #MEcfs #PwME @talmandaniel.bsky.social

It's 12 years today since I did drag, at work. I'm kind of gutted that no photos exist but so pleased that I did it. Looking back it played a small part in my much needed faith deconstruction. It was such a surreal experience but so much fun, even if the high heels were two sizes too small. 😂👠

My latest article which is Part 2 On The Subject of Wintering This article was inspired by the book ‘Wintering’ by Katherine May (2020) and studies the term in relation to those with the disease, MyalgicEncephalomyelitis, or M.E. #MyalgicEncephalomyelitis www.thriftvip.co.uk/articles/on-...

I can’t wait for this cookbook! I’ve been talking with Rachel all along the way and I know the recipes are going to be so amazing. I just pre-ordered two copies so I can give one to my daughter. It would help Rachel if you pre-ordered a copy. www.healthrising.org/blog/2025/01...

For those of us living on the edges of society, #pwME & other marginalised conditions), I’m feeling slightly less alone and slightly less in a minority of the ‘Missing In Action’ from life, as sadly & as expected, the cases of Long Covid / M.E. rise. My article: www.thriftvip.co.uk/articles/on-...

Latest episode of Post-Exertional Mayonnaise podcast out now! @litsadremousis.bsky.social, @dovsz.bsky.social and I talk about living with ME in a world of change youtu.be/Sc9GRzktRws?...

Read a Facebook post today which mentioned ME and memory loss. It struck a chord with me as my memory has been terrible recently. If you have ME, has your memory become really poor over the years? I get head tremors so sometimes wonder if it's linked to them!

New episode of our ME and Chronic illness podcast, Post-Exertional Mayonnaise is out soon. We consider how change impacts us as people with ME. Out soon! Search for us on YouTube and your podcast provider. Also find us at pempod.com

Today’s cartoon - because I had some fun and now I’m in bed (still having some fun). #IYKYK #ChronicIllness #ChronicIllnessMemes #WheelchairUsers #PEM #ME #MEcfs #LC #POTS #MCAS #InvisibleIllness #Fibromyalgia #LymeDisease #PostInfectiousIllness

I sometimes think that ME is as just as much about dealing with the mindf#@k that the condition and PEM places you in, as the physical symptoms. It feels like you can forget how bad it can get until it happens again. A fresh hell each time.

Thanks @talmandaniel.bsky.social for contributing to this in-depth article on parenting with #LongCovid #MECFS The only reason this injustice is happening is due to decades of systemic neglect. Australia is still far behind UK, US & even NZ! www.abc.net.au/news/2024-12...

ME peeps... If you accidentally found something that, legally, made you feel wonderfully ME free and energised for an hour or two without major PEM, despite being potentially risky and having possible longer term side effects, would you try it again?

Honoured to have been included in this article by Jeremy Jeffs on his photography project. wellcomecollection.org/stories/livi... #MyalgicE

Article in the @thesicktimes.bsky.social about the ME Association chairman’s article and the fallout thesicktimes.org/2024/11/22/a...

I can’t recommend the #ThereForME’s weekly substack posts highly enough.Informative, upbeat and honest. These 3 women have done more for #ME in 4months than I would have thought possible. A truly democratic setup too. Do sign on for free. #ME #LongCovid 👇

Hello to new followers. Sorry if I haven't yet been able to follow everyone back!

If you’ve read the article by the MEA today and feel 🤬 then you can have your say at their AGM but you have to contact them asking to attend. The chairman’s opening article is at best unwise! Please read my post ⬇️ x.com/fionangreg/s...

1/ I’d really appreciate pwME to look at my tweet on X. It’s about the ME Association. Two ladies from our community have taken a bold courageous step in my view and written a motion for discussion at this year’s AGM on 9th December. We’re encouraging everyone to attend. x.com/fionangreg/s...

Want to be astounded? Spend 15 minutes watching this. Wow. youtu.be/7J_Ugp8ZB4E?...

You can sign from anywhere in the world - one link for USA, another for everywhere else 🌏 1/2

Some people have asked why I’m still on X. I’ve thought a lot about it and what’s the right thing to do as a journalist. Currently, I’m staying because many marginalised people - especially disabled people - rely on the platform and I can’t do my job well shutting that out. 1/4

I've replaced the twitter icon on my phone with the bluesky one. Part of shifting the habit.

Whilst I’m not leaving X as yet, I would very much like to spend more time here. So, if you see this and you’d be kind enough to share it to let readers find me, that would be greatly appreciated. Hi!

Good morning from here

Hello. I think it's time I start using this app properly.

So excited to share this new episode of Post-Exertional Mayonnaise, out now! Judith lives with severe ME and she and her partner Matthias organised an exhibition of work by #severeME patients from all over the world last summer. They talk here about their work! youtu.be/hNVl69RivF4?...

New episode of Post-Exertional Mayonnaise ME podcast out now! As part of our grief stories series, Rebecca shares her own personal story of learning to accept a new pace of life with Myalgic Encephalomyelitis. Find on our YouTube channel or wherever you access podcasts! youtu.be/ci_N4W1F0o0?...

New episode of Post-Exertional Mayonnaise podcast out now! In this episode I speak to Author, Essayist and ME activist, Litsa Dremousis. We talked her ME story, writing in national US publications and love of music. Available on YouTube or wherever you get podcasts! youtu.be/WGiplyvKcKU?...

In the latest episode of Post-Exertional Mayonnaise podcast. Michael from Chat with ME podcast and I talk about the challenges of living with ME over holiday season. youtu.be/dkENC7yo8bM?...

New episode of Post-Exertional Mayonnaise podcast out now. Continuing our chronic illness grief series, I spoke to @dsavannah.bsky.social about life with ME and Chronic illness and managing the grief that comes with it. youtu.be/PC-IVZ867Ao?...

Recent article in View from the Trenches of Myalgic Encephalomyelitis about cardiac issues in ME. We know a lot more than many realize. Knowledge is power. Covers update of the Cardiac info sheet from ME-ICC info. colleensteckelmeiccinfo.substack.com/p/cardiology... #MyalgicEncephalomyelitis

New episode of Post-Exertional Mayonnaise podcast out now, continuing our grief stories series. Ash shares about life with Severe ME, finding love over a long distance, and managing the grief that comes with chronic illness. youtu.be/_4UEPNbEqDs?...

New Post-Exertional Mayonnaise podcast is out now. I talk to actress Jennie Jacques from Vikings about her experience living with ME over the past 5 years. Please do take some time to listen if you're able. It's affirming, funny and fighty! youtu.be/JO8o6o_JZ2o?...

Really enjoyed talking to Vikings actress Jennie Jacques today for Post-Exertional Mayonnaise podcast. She is a fierce advocate for the ME community. Look out for the episode in the next few days, you won't want to miss it!

New episode of Post-Exertional Mayonnaise podcast (ME and chronic illness) out now. Dov and I review our grief stories series so far and read written contributions from listeners. Available via Spotify and podcast platforms as well as here on YouTube: youtu.be/rcOv0dCYUx0?...

"Ravens are the birds I'll miss most when I die. If only the darkness into which we must look were composed of the black light of their limber intelligence. If only we did not have to die at all. Instead, become ravens." --Louise Erdrich #art #birds

I recently spoke to Colleen who has lived with MECFS for over 30 years for Post-Exertional Mayonnaise podcast. It was great to hear her perspective in this shorter episode. open.spotify.com/episode/0unL... Also available via our YouTube channel.