1/ 🚨 To all @UKLabour MPs: You hold 403 seats. 127 of you have now signed the amendment challenging the proposed changes to disability benefits. That’s not a minor rebellion — it’s a movement.

To all Labour MPs @teamlabouruk.bsky.social

1/ To all @UKLabour MPs — don’t be pressured into voting YES on July 1st. Reform is needed, but not like this. The recent U-turn protects current PIP claimants while unfairly targeting future applicants. That’s not reform — it’s division. We need leadership that listens, not legislation

To all @UKLabour MPs — don’t be pressured into voting YES on July 1st. Reform is needed, but not like this. The recent U-turn protects current PIP claimants while unfairly targeting future applicants. That’s not reform — it’s division. 1/

@aaronca11.bsky.social how are you? Your account on X seems deleted. I’m just worried @thecanaryuk.bsky.social ? ?

As this is #MEAwarenessDay let’s remember those who are no longer with us. We pay tribute to them for their courage and fighting this truly awful undermined disease. Please post in the comments who you miss because they died due to ME or connected to it 1/

1/ I’m not especially knowledgeable on our politics let alone the US. I do not agree with lots that T says, but I did like his enthusiasm for his country. That felt authentic. We seem to have lost pride in our country somewhat. I believe in inclusion of different faiths, cultures etc but I don’t

1/copied from X So very accurate Carole Bruce. I’m so outraged I can hardly adequately express my feelings to this madness of allowing human beings to starve to death. I wish with all my heart I was exaggerating or catastrophizing but the reality is that receiving life giving absolutely essential

women with #longcovid and #mecfs face the unique challenge of being neglected and not trusted despite being severely ill more details on the image and how to buy them for fundraising here www.instagram.com/p/DDzwZv3NV5...

First, do no harm: If a person with a fatiguing illness reports feeling worse after exertion, exercise is not the remedy. #mecfs #fibromyalgia #postexertionalmalaise www.medscape.com/viewarticle/...

Please nominate. It’s really quick to do 😉 And share please 💙 Still time to nominate ME Research UK for a £1000 donation from Benefact Group's '12 Days of Giving'. Nominations close on 19th December. It is free and easy to nominate a worthy cause - tinyurl.com/382pkzs8 #CharityNomination

1/ This is an amazing video produced by an ME patient that gives the history of ME thus far. Despite the ‘findings’ that the group of psychiatrists who delivered the PACE trial have now been debunked, the dogma still persists. youtu.be/RiwX9Y0NbiQ?si…

Keep sharing 💙

Keep sharing 💙

A very interesting & informative article 💙

"In the past five years, more than 7 million deaths from COVID-19 have been reported to WHO, but we estimate the true death toll to be at least three times higher. "We cannot talk about COVID in the past tense. It’s still with us, it still causes acute disease and 'long COVID', and it still kills"

Dear @wesstreeting, as you'll be aware, the @UKHSA national surveillance programmes collect data on HCAI, including: Bacteraemia Clostridioides difficile infection Escherichia coli and MRSA. ⚠️But, not for #SARSCoV2 virus (COVID-19)? Why? @covidinquiryuk petition.parliament.uk/petitions/70...

It’s not too late to use this template to contact your MP for the APPG on ME 17th December. appgme.co.uk/meetings/app...

1/ It’s been a hard week following friends visiting last weekend which was lovely but the ME Association AGM really finished me off. Still absolutely exhausted. Not sure what you’ve heard but a whole hour dedicated to the Trustees life stories was a tad too long & unnecessary given it was a AGM.

1/ 📣 𝐓𝐨 𝐚𝐥𝐥 𝐌𝐄 𝐀𝐬𝐬𝐨𝐜𝐢𝐚𝐭𝐢𝐨𝐧 𝐦𝐞𝐦𝐛𝐞𝐫𝐬 A big thank you to Elisabeth @lammas_leaves & @nickyproctor.bsky.social for all their hard work in writing the motion, and ensuring it is on the agenda of the AGM on Monday 9th December at 2pm.

📣The update on my complaint to the ME Association about the Chairman’s editorial ⬇️

📣 ME Association update on my complaint . Apologies, but I’m too exhausted to split my post up into numerous posts so I hope you’ll go onto X to read it or if someone can post it on here then that would be great! 💙 1/ x.com/fionangreg/s... 2/ x.com/fionangreg/s...

📣Calling all members of the ME Association. If you can, please attend the AGM if possible because this is a very critical juncture. Email:[email protected] for link to AGM 💙 ⬇️

Vlog #4 E028 hypoallergenic oral feed for MCAS. ⬇️ x.com/fionangreg/s... Had a bad couple of days. Anyone seen Dr Aziz in London? thephysiciansclinic.co.uk/phisician/prof…#SevereMEM#MCASA#ThereForMEM#DontLetMEDiei#SaveCarlaandKarenen

1/ Wow! This video has really validated my gut problems throughout my life My tipping point was the UTI summer 2023. So pleased I’ve found this. There are videos on the subject of #MCAS. Well that has cheered me up plus pain is beginning to decrease in my head 🙌💙 youtu.be/AlxzbnCvbvA?...

1/ Feeling absolutely crap today. Terrible migraine day two & worse today. Couldn’t manage much feed as tried the powdered no flavor form. I’m hungry but not hungry. I feel weak and just blxxdy awful tbh. So wish I could have iv paracetamol as it’s the only thing that clears my migraines.

1/ Vlog #3 E028 hypoallergenic oral feed for MCAS. The trial continues. Apologies for the flared nostrils! #inherited Sorry but video too long so please watch on X ☹️ x.com/fionangreg/s... #SevereME #MCAS #ThereForME #DontLetMEDie #SaveCarlaandKaren

1/ I’ve decided to document my journey with MCAS and my digestive system to help raise awareness of this awful illness because it is under recognized by the NHS, partly because they don’t understand it and maybe because there are no NICE guidelines. I want to change that if I can.

Vlog #2 on E028 hypoallergenic feed orally. The results. Also on instagram as @chronicillnesswarrior1 x.com/fionangreg/s...

Vlog #1 on taking E028 hypoallergenic feed orally for MCAS x.com/fionangreg/s...

@jay.bsky.team hi Thank you for this service It’s very refreshing I like seeing posts in time order not by algorithms 😉 May I ask, will there be a facility to acquire more word count? I’m not great at being succinct 🤦‍♀️ Saying that, we obviously don’t want it to become a carbon copy of X Thanks 😊

1/ Re @MEAssociation editorial and reply statement. As frustrating as the editorial & the follow-up statement are, the best thing we can do is make an official complaint in writing to the Board of Trustees. We all do need to vent, but I’m concerned that the seriousness of this monumental editorial

I want to restart my blog. I was on Wordpress but is Substack easier? @ColleenSteckal fionabwood.wordpress.com?_gl=1*17c8gr...

Should you wish to express your concerns to the MEA I’d encourage you to email them with facts in a respectful manner giving them 2-4 weeks to reply before escalating the issue to the charity commission. To contact the MEA; [email protected] [email protected]

1/ This ‘editorial’ from the MEA magazine made me second guess myself! Despite knowing my body very well and on how much I can push it, this naive editorial at best, arrogant at worst, made me rethink, I’m ashamed to say 😔 I’m bed bound but up to the toilet most of the time with or without my

Can you purchase more word allocation on here? I should learn to be more succinct but blame my parents for sending me to nursery school so I would talk 🤣 That’s why I’ve not finished my book on chronic illness because I keep adding to it 🤓

1/ The information Elisabeth @lammas_leaves on X has provided is very helpful to understand why the Trustee situation needs to be looked at within the @MEAssociation and why the Charity Governance Code needs to be adhered to. @georgemonbiot.bsky.social @davetuller1.bsky.social

@talmandaniel.bsky.social thanks for the re posts 😉💙

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...

I’ve just written a book over on eX 😂 about the ME Association & what you guys can do to support Elisabeth & @nickyproctor.bsky.social with the motion they’ve written for the upcoming AGM on 7/12/24 My book is here x.com/fionangreg/s... Let’s find out why £millions are sitting in the bank & why

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...

How many relate?

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...

I’ve only just seen this post on X Please message @Swiftsswallows It's 6 months today since my daughter Isla died. She had Severe ME, POTS & MCAS. Still waiting for a Pathology report, still waiting for answers. Sharing a happy photo from 10 years ago. #ME #SevereME #thegreatestmedicalscandal

Covid query A friend is back in hospital with pneumonia now Started with Covid on hols then dizziness & vertigo on flight home Admitted 2.5 wks told a virus 🙄 Home, now back in, bad pneumonia, UTI, vestibular neuritis I think it stems from Covid Anyone know the variant in UK atm? Anyone relate? ⬇️

I just signed this important open letter on Organise, please can you add your name? Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.) - M.E. Foggy Dog Campaign

@ghmansfield.bsky.social do you help people in hospital with severe ME when drs trying to treat it as psychological or even trying to section people? Not happening yet Just spent 16 days in hospital without correct treatment ie, artificial feeding due to MCAS, common morbidity. Getting prepared 🤦‍♀️

Okay, so my notifications have been blowing up probably bc more of the people I follow & who follow me are jumping ship Anyone with ME (or supporter) whether from LC or not, whether UK or not please follow me or say hi so I can follow you bc I don’t want to lose my beloved ME community Much love 💙

I jiggered the link by stupidly dropping an emoji into it. Here it is without the pratfall. www.monbiot.com/about/

Hi ME & LC friends 💙 @fionangreg on X Here so I don’t lose you all 🥹