chatwithmepodcast

@cfs_jo Same 🙏❤️

Ooo nice little surprise this morning when checking bank account, PIP due Monday and I forgot they pay it early on a Bank Holiday.

@silverpebble Thank you for this 🥰 I’ve screen shot to send to my wife 🥰

I’ve just realised that the darkest ten weeks of the winter are behind us & just now we’re gaining 2 minutes of daylight each day here in the UK. A hopeful thought 🌿

@cfs_jo 😖😢 as a parent, I cannot understand why you wouldn’t get your children vaccinated 🤦‍♂️🤷‍♂️

Here we go.

@katiamek That is awful!!!

This is the food I get as a patient with severe ME (It’s all fried). When you lose the capability to nurture yourself unfortunately you can’t control anything. I’ve begged and explained what my GI can tolerate and need. Nothing changes. Ever. They just don’t care. #pwme #mecfs

@alexandrite113 *Sorry vicious circle/cycle - though I may coin biscuit cycle, I like the sound of that

@alexandrite113 You’re so not alone there. It’s so true how all of this just piles on top and can send you spiralling. And knowing you need to rest, sometimes, for me at least, makes it worse as I’m actively trying to rest. Biscuit cycle!

No matter how good you are at pacing, emotions can get the better of you and you'll get PEM from anger/frustration/fear. Trying to rest but I can't stop thinking about what made me upset, so I need to distract myself, but ofc I can't or I'll crash further. There is no way out.

The release of the Decode ME results have coincided with the most severe episode of PEM I've suffered in 15 years of having #MyalgicEncephalomyelitis. I pray the study leads to treatment because there's no way I'm going through this for much longer.

(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more. These findings reflect the lived experience of thousands of #pwME. Thanks to all our participants & supporters who made this possible! Read a summary of our results:  shorturl.at/pgsjk

@onbeing_ill …knowing that if I have to cancel there’s no guilt. It is tough a you still get guilt - especially having kids now too. But it is possible and if you find the right person, you’ll know as they will accept you for you 🥰

@onbeing_ill Moderate here too, but I was honest with my now wife and then girlfriend about my ME and that I was mild at that point and managing life quite well. I did warn of relapses and had many which leads to being moderate now. But open communication where possible and plan events…

how are people managing romantic relationships with severe ME? genuine question, i’d love to have some hope that it would eventually be possible for me but also want to stay realistic 🥲

#MECFS is a health scandal. #millionsmissing from work, education & society but no agreement on how many are affected. Ignored by healthcare, excluded from research, invisible in data. This isn’t just neglect. It’s erasure. Info on exhibition and book tinyurl.com/58khuv8z

We are looking for a graphic designer to create new flyers for us. Paid job which we would love to go to an ME sufferer or carer to support our community. Please reach out to us if you are interested: smileformecharity@gmail.com 🩵

The BMJ @bmj_latest has not published a rapid resopnse from Maeve Boothby O'Neill's mum, Sarah, to its ME/CFS "hope" propaganda piece from members of the biopsychosocial ideological brigades. So I have posted it here: virology.ws/2025/07/23/tri…

Channel 4 News segment (5 mins) on the new government delivery plan for #MECFS. Interviews with Dr @BinitaKane, Sajid Javid and Nick Benton a patient and his family. youtu.be/1sYD5iBXw8k?si…

@ArsenBalls Blocked them too - strange way to get kicks

I don’t know what’s going on here, if it’s sarcasm, an unhinged person or cruelty, but I’m blocking them. I’ve no idea why we are mutuals and am concerned that too many ME & LC follow this person. They’re peddling misinformation and mocking real science.

@merelpianist So sorry to hear about this 😢 shocking that they think this is acceptable 😢

During my 12 day stay in hospital I have collected some entertaining stories. The one that will always stay with me is when I asked the nurse for a Covid test kit to check whether my symptoms were 'just' Long Covid PEM symptoms or whether I had picked up another Covid infection.

@cfs_jo 🤣🤣🤣

Saw this on fb 😆

What about when existing claimants need to reapply for PIP? Will they receive the same amount or be treated as new claimants? #DisabilityRebellion #TakingThePIP #r4today

@Dan_Wyke @Klang764 I fear it will be starting as new on renewal ? But do they really think we will be so selfish as to think “ well I’m alright Jack!” so long as I keep getting it forget the new claimants ?! No we are caring compassionate and fight for ALL sick and disabled rights .