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Bristol
Joined April 2009
- Tweets16.8K
- Following2.1K
- Followers12.3K
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Action for ME retweeted
Today we've sent a #ThereForME letter, co-signed by 28 organisations and smaller initiatives, to @LaylaMoran @CommonsHealth
The letter points to inadequacies, present and historic, in care for people with ME and Long Covid, and calls on the committee to undertake an inquiry.
Action for ME retweeted
If you can, please listen to today’s episode of #thestory. It’s a tough listen, but it’s important. We’re immensely grateful to Sean @TimesONeill for taking the time to tell @ManveenRana about the heartbreaking story of Maeve, his daughter. 🎧👇
“My daughter died of ME. I had to fight the NHS for answers.”
On The Story today, how Maeve Boothby-O’Neill’s death from myalgic encephalomyelitis could change the NHS. With @TimesONeill and @ManveenRana ⬇️
open.spotify.com/episode/02h…
Action for ME retweeted
UK Action for ME @actionforme Genetics Centre of Excellence webinar
24 October, from 2 to 3 pm hosted by AfME, speakers include Prof Chris Ponting @CGATist , Prof Simon Carding @CardingLab and Dr Audrey Ryback, plus Q&A session.
actionforme.org.uk/news/gene…
#MEcfs #PwME
Action for ME retweeted
Update on a new All-Party Parliamentary Group (APPG) on ME
Action for ME and the ME Association are keen to continue providing joint secretariat for a new All-Party Parliamentary Group (APPG) on ME.
We are now in the process of contacting parliamentarians to secure commitment from parliamentarians to take on one of the four officer roles needed to establish the APPG and the minimum requirement of 20 members.
Read more here:
meassociation.org.uk/oire
@ActionforME
#pwME #MECFS #MyalgicEncephalomyelitis #APPGonME #ActionforME #MEAssociation
ALT IMAGE DESCRIPTION: Image of the Houses of Parliament. Wording - Information: Update on a new All-Party Parliamentary Group (APPG) on ME. Logos for ME Association, Action For M.E and APPG (bottom right)
Action for ME retweeted
#MaeveInquest
Coroner says she will write a reg 28 report to NHS England, DHSC & NICE
She says SB is quite right when she says people will move around, move on, that she was expecting a policy doc that would give a pathway if someone came through the door
Action for ME retweeted
"I'm definitely one of the lucky ones... in some cases people are dying"
Former Team GB Rower Oonagh Cousins tells @skysarahjane about how Long COVID has impacted her life.
trib.al/Rx0iR33
📺 Sky 501, Virgin 602, Freeview 233 and YouTube
Action for ME retweeted
I was so incredibly sad to hear the news about Francis. He was an amazing colleague in the @WorldMEAlliance. Thoughtful, sensitive and very committed to improving the lives of people with ME. Sending condolences to his family, friends & colleagues including those @EMEC_advocacy
Action for ME retweeted
‘There’s so little real understanding of ME in the NHS’, says campaigner
channel4.com/news/theres-so-…
Action for ME retweeted
Action for ME retweeted
Thanks very much to all the staff & all who supported this fundraiser in Eurospar in Carrickfergus.
It's covered in this article here:
northernirelandworld.com/hea…
People can still read about Lee's fundraiser & donate to their chosen charity here: awalkforme.com/
#MEcfs #PwME
ALT A Carrickfergus man, who undertook a 2,500km trek around the Irish coast, has received a funding boost for his chosen charities from a hometown store. Lee Colligan’s walk from Cork to Carrickfergus was a tribute to his brother Josh (29), who died in August 2023 with Myalgic Encephalomyelitis (M.E), also called chronic fatigue syndrome/CFS. The team at Eurospar Victoria Road got behind his effort and raised over £1,000 for Action for M.E and Irish ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) Association.
Action for ME retweeted
Today, on #SevereMEDay, we commemorate the people living with severe #MECFS.
Their daily struggle with this debilitating disease is beyond our imagination and mostly invisible. We recognize their suffering and the tremendous challenges they and their caregivers face every day.
Let's stand together in solidarity and make their voices heard!
(🧵1/4)
Action for ME retweeted
Really great for @CGATist and I to meet with Kyle & colleagues @HartreeCentre @STFC_Matters in Daresbury today to explore potential collaboration in #MyalgicEncephalomyelitis #MECFS research @actionforme @DecodeMEstudy
Action for ME retweeted
#MyalgicE
“Josh Colligan from Carrickfergus died at the age of 29 last August after falling ill in 2017
He had finished 12th in Belfast marathon a year before he became ill with ME, which saw him becoming bedbound and reliant on their family for care”
newsletter.co.uk/news/people…
Action for ME retweeted
The outcomes of this inquest will have implications globally, and member organisations of the World ME Alliance everywhere are following the events. We will be working to highlight the, often shocking, treatment of #SevereME globally in the run up to #SevereMEDay on August 8th.
Action for ME retweeted
Tune into @BBCScotlandNews today at 9pm to hear @actionforme CEO, Sonya Chowdhury, talk about ME
ALT Image of tv screen with Action For ME CEO, Sonya Chowdhury smiling. In the left hand corner of tv screen is the BBC News Scotland logo. Beneath the TV is an image of a TV remote and writing that says 'BBC News Scotland Monday 29th July at 9pm'
Action for ME retweeted
One thing which the UK ME community really needs is a new generation of doctors, medics, researchers and spokespeople to wave the flag for people with ME.
Being well-intentioned and nice is not sufficient any more, we need to foster influential people with measurable impact.
Action for ME retweeted
Reminder: Today is the final day to submit your work! ✅
ME Action is accepting submissions of artwork by people with severe ME. The works will be featured on Severe ME Day (August 8th).
buff.ly/4cOFonj
#MECFS #SevereMEDay #MillionsMissing
Action for ME retweeted
Our #ThereForME open letter from ME/Long Covid patients & carers to @wesstreeting has just hit 700 signatures!
For any LC/ME patients + carers in the UK who haven't already signed, all info below 👇
But go slow. Be careful of your energy. Pace it.
We're in it for the long haul. If you can manage just one thing by August 2 make it this 👇
(UK ME/LC patients & carers only for this one 🇬🇧)
forms.gle/zZADC9rjeHPCCQzV6
(14/15)
Action for ME retweeted
We’re supporting #ThereForME: a new patient and carer led campaign calling for an NHS that’s there for ME & Long Covid.
☑️ Sign the open letter
☑️ Share the policy brief
☑️ Write to your MP
linktr.ee/ThereForME
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #LongCovid #pwLC
Action for ME retweeted
📢 THIS IS IT! I'm launching a new campaign today w/ @GoreLloyd. We're both carers to partners with v severe ME/Long Covid. I have LC/ME myself.
Welcome to #ThereForME: a campaign calling for an NHS that's there for ME & Long Covid.
Our story 👇
bit.ly/3SkrC3T
(1/15)
ALT Orange text on an off-white background reads “We need an NHS that’s there for Long Covid & ME” above 3 stripes in orange, pink and blue, which lie above an inky dark blue banner with the hashtag #ThereForME