Karen Howard 🇺🇦 @Kazz1908
leeds uk Joined April 2009-
Tweets3K
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Followers98
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Following785
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Likes17K
youtube.com/watch?v=YoCT_K… Thank you @MEActNetUK This made me tearful, it’s so powerful.
YESSS!!!! Congrats Chris Ponting and team
Great news from the UK🍾 £4.75 million to do whole-genome sequencing on 6000 DecodeME samples thetimes.com/uk/healthcare/… (paywall) Unfortunately it's not enough to analyse the full sample People can find out more about SequenceME & donate here megenetics.org.uk/our-projects/s… #MEcfs #PwME
This is appalling
This week we were informed by DHSC, alongside other organisations, that DHSC and NHS England have delayed discussions on commissioning a specialised service for very severe ME until April 2027. This means yet another year without NHS care for people with very severe ME. (1/3)
Nigel Farage said Andrew Tate is an “important voice” for men. Andrew Tate said women should “bear responsibility” for being sexually assaulted. Reform UK has no credibility when it comes to standing up for women and girls.
Karen Hargrave - @KarenLHargrave on BBC The World at One talking about her husband, James with severe #MECFS and the new government delivery plan which lacks any concrete tangible solutions, also includes a representative from BACME. youtu.be/R6AReGLoy4o?si…
A shame not to get the opportunity to correct the record with the guest interviewed after this (IYKYK), but if listeners remember one thing from this Radio 4 segment I hope it’s this 👇
“I honestly just did not realise that it was possible, in the UK in 2025, to be as sick as my husband is & for there to be basically no specialist NHS services to provide any kind of support” Our co-founder @KarenLHargrave on Radio 4 WATO 👇 (Recording via @ABrokenBattery)
The ME/CFS Final Delivery Plan is out. As expected, it doesn’t deliver. Karen breaks down the big gaps, small wins, and what comes next. 👇🏻 It's deeply disappointing, but this is not the end. @ThereForME_UK will keep fighting for action, not words.
The Final Delivery Plan for ME/CFS has been released today. The full report was shared with some organisations and media outlets late yesterday. We’re waiting for it to go online. A short 🧵with some thoughts… (1/)
I was asked to take a look into this tweet, cos, well, it’s Andrea Jenkyns!🤷🏼♀️ So first - the substance of the story… 1/20
Pain relief is available for gynaecological procedures in the NHS. Always question why you are NOT offered it! In the NHS, There is & should be access to topical lidocaine injection, spray, entonox, and it should be routine. For pelvic exams, never agree to put your hands underneath you to help the practitioner. This is a red flag for a wrong-sized speculum. Here ⬇️I explain why it’s a teaching & equipment issue with the practitioner and NOT you being the problem Compassion and care is a basic requirement
We have been asked to share the following update about Karen Gordon. Karen's father asks you all to, 'Please keep sharing this petition and telling people about Karen’s situation.' ow.ly/HBTP50Wr48F #MyalgicEncephalomyelitis #VerySevereME #pwME
This is great
A woman in a burqa has never done me any harm. Women wearing burqas haven't told me lies to get me to vote for them. They haven't cost me money by mismanaging businesses. They haven't got drunk and spouted abuse. Men in suits did though; maybe we should ban suits?
It’s 30 June….the ME Delivery Plan is a no-show. It’s unacceptable. #pwME have been left in darkness for too long. I’m with @HelenMorganMP: ‘The government must think again, publish the plan without delay, and allocate it the resources it needs to make a real difference.’
The Final Delivery Plan for ME/CFS has been released today. The full report was shared with some organisations and media outlets late yesterday. We’re waiting for it to go online. A short 🧵with some thoughts… (1/)
Farmers are totally perplexed 1950-1990 cheap food 1990-2010 oh shit that crashes nature 2016 green BREXIT 2020-23 public goods for public £ 2024 not quite enough £ 2025 we’ve lost interest - can you do cheap food and nature with no funding? This wasn’t on anyone’s bingo card
“ well son when I was your age we used to call this nature friendly farming. A wonderful blend of nature thriving alongside healthy nutritious food that was a benefit for all”
Can someone explain to me how we can cheapen food, end farm support, retain domestic food production, have food security and create a more sustainable and nature friendly farming system? No? OK thanks
For years, your weekly shop has gone up. Our deal with the EU will mean lower food prices at the checkout. Putting more money in your pocket.
Sending love to everybody affected by ME/CFS. It’s a long-term condition with a wide range of symptoms. Unless somebody has this condition they don’t know how exhausting it can be. #MEAwarenessDay #MECFS #MECFSAwareness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Neglect of #MECFS patients has been going on for decades yet the answer is #StillTheSaME. There is never any funds for research & care. This has to change! Fund #MECFS research now! @AshleyDalton_MP @leicesterliz @stephenctimms @JoPlattLeigh @EdwardJDavey @tessamunt @sajidjavid
This #WorldMEday we want to take a pause & recognise the challenges, stigma & neglect that many #pwME face. We hope that #DecodeME can pave the way forward in accelerating research into M.E./CFS & will help to set a standard in research to include voices of pw lived experiences.
Dear @BillGates, ME/CFS is the most underfunded disease in the world with the lowest quality of life. Can you help us? There is no cure. We are waiting in our beds to die
I’m so delighted that all 72 LibDem MPs signed this letter to @wesstreeting @AshleyDalton_MP asking the govt to back the ME/CFS Delivery Plan with the resources it deserves. May this be a huge encouragement to the ME community and the start of meaningful change. #WorldMEDay
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875 Followers 4K Following #Love #Nature I followed my heart and it led me to the beach 🏖️
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𝐌𝐚𝐭𝐭 𝐏... @Matt_Pinner
364K Followers 195K Following Professional banger maker on @X. Crafting hits since 2025—the best platform in the universe! Viral polls & Videos. photography Collabs: DM me.📈
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13 Followers 51 Following
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James Moore @JimMooreJourno
4K Followers 829 Following Writings from the @Independent. Disability rights. T1diabetes. SEND parenting. Social justice. Fairer finance. Random thoughts on music, geek culture, sport etc
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European ME Coalition... @EMEC_advocacy
1K Followers 69 Following Advocacy organization for ME/CFS patients and their carers in Europe
Richard Bramley @SustEnvFarming
3K Followers 1K Following Farmer, environmentalist, campaigner, educator, realist- just trying to make a difference! For a sustainable future. CEnv
Fatigo_ME @Fatigo_MECFS
2K Followers 2K Following #MECFS #Lyme recovery & creating awareness. Research, News, Views & Functional medicine approaches to healing #biohacking. Former Architectural designer on hold
FarmingUK @FarmingUK
81K Followers 494 Following Leading UK farming website. Latest agricultural and rural news from across the country - always Backing British Farming 🚜 🇬🇧
Bettina Grande @GrandeBettina
9K Followers 759 Following Psychologische Psychotherapeutin Charité Berlin & Heidelberg Psychotherapie-Netzwerk ME/CFS Aufklärung, Schutz & Versorgung #MECFS #PEM #PEMistnotnegotiable
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Open Medicine Foundat... @OpenMedF
14K Followers 1K Following OMF is fundraising to support open, collaborative research to find effective treatments and diagnostic markers for ME/CFS, Long COVID, and related diseases.
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3K Followers 3K Following Physio with a doctorate in health research #MECFS #LongCovid #frailty #mtb #cycling #feelthefearanddoitanyway co-founder @PhysiosForME Views are all my own
Ror Preston @RorPreston
3K Followers 606 Following Founder @wecrunchme | Data-informed advocacy to accelerate research on infection-associated chronic illnesses (IACIs) 💙 | #MECFS since 2018
Anil van der Zee © @AnilvanderZee
10K Followers 890 Following Former professional ballet dancer | Bed- and wheelchair bound M.E. patient | Using ✖️ to raise awareness for #pwME | #IACI #art2cureME #pwme #millionsmissing
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