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Action for M.E.
@actionforme
We take action to end the ignorance, injustice & neglect faced by the 250,000 #pwME in the UK. We’re online Mon-Fri 10-4. Our helpline: 0117 927 9551. Open 10-3
Bristolactionforme.org.ukJoined April 2009

Action for M.E.’s Tweets

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DecodeME will analyse DNA in the saliva of 25,000 donated samples from #pwme to better understand the condition. You can sign up now & be 1 of them at decodeme.org.uk. We are proud to be part of the patient-led partnership leading the world’s largest genetic study of M.E.
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The DecodeME study is now open. You can take part now by visiting decodeme.org.uk/portal and signing up. You can read our full statement about today's launch here decodeme.org.uk/statement Thank you for your support. #pwme #decodeme #decodmestudy #MECFS
Decode1ME logo In light of Her Majesty Queen Elizabeth II’s death and this period of national mourning, we seriously considered how best to proceed with the planned launch of our study today.  We recognise how much the DecodeME study means to people with ME and the patience of the community in waiting for its full launch.   Therefore, we are continuing as planned by opening full recruitment today. You can now visit our website and click 'Take part' to begin. 16 or over? Live in the UK? Have ME/CFS? Visit decodeme.org.uk
DecodeME logo. Take part now. 16 or over? Live in the UK? Have ME/CFS? Visit decodeme.org.uk
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Sharing this for anyone else unable to get out for an appointment - great to see a home visit was offered #MECFS #LongCovid
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I’ve been unable to go out lately as the ME too bad at the moment. Thankfully @Specsavers gave me a home visit. Really lovely people. The tests were easy. Very knowledgeable about my condition, ME & how it affects my eyes. I would not have been able to access atm otherwise. 🤓🙏
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The morning was a great success, with coffee, crafts, a guess the bear’s name game and a raffle. Christine and her friends raised over £350, which is fantastic! Thank you so much, Christine, for all your hard work. We are so grateful for your support.
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Christine said: “Some of us have relatives who have ME/CFS. I know there is still a stigma towards such conditions and many don't understand or validate sufferers. I myself have Fibromyalgia so I know what that feels like. Support is so important.”
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"More recently, patient activism, combined with new data on the underlying biology of the illness, has resulted in changes in treatment guidelines and a renewed focus on ME as a biologically grounded post-viral disease." #MECFS #LongCovid #DecodeME
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Really thorough article from @PatrickFreyne1 in @IrishTimes, with valuable historical account of the medical misogyny towards #MECFS from @b_m_hughes. Plus the text-to-speech button on the page is helpful for #brainfog as well as visual impairments 👍 irishtimes.com/health/your-we
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1/2 have selected a poster submitted by Avril from on behalf of the ME charities in Scotland - The ME Association, and 25% ME Group. The poster promotes the Learna CPD module to health professionals, as 1 of 20 displayed at...
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The partners in Learn about M.E., @actionforme, @meactionscot, @MEAssociation & the 25% ME Group, submitted a poster & we are excited to announce it's been listed as a finalist! You can view this fantastic poster here: ow.ly/NnFo50Le4Ws.
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We will work at your pace & communicate in a way that suits you. We will be led by you to secure access to services that meet your needs & have your rights respected. We will also support you to develop self-advocacy skills.
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Did you know that we offer a FREE independent advocacy service for children & young #pwME? If you are 18 or under, our dedicated Young People’s Advocacy Officer can work with you to ensure your voice is heard in situations that affect you.
3 people holding hands. "Did you know that we offer a FREE independent advocacy service for children & young people with M.E.?"
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We need the hundreds of millions of pounds missing from ME research . #MillionsMissing #LongCovid #WeAreAllConnected
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Today #MECFS sufferers gathered in London to demand @wellcometrust commit £100 million towards biomedical research into #MyalgicE. #MillionsMissing numbers are growing due to #LongCovid. Red thread represents links between conditions @meactnetuk #WeAreAllConnected #spoonie
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Emma, a white woman in her 30s with short brown hair, lies in bed on her side, holding a red thread that falls in front of her face. Text reads, 'We are all connected'.
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The partners in Learn about M.E. wrote a blog discussing the Learn about M.E. project & how it's addressed the need for increased education, understanding & support around #MECFS for health & social care professionals. It also details the impact M.E. has on a person's life.
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Every year, hold a poster competition as part of their annual conference, & this year the focus is around 'Fair Health'. is a national intermediary & network for health organisations in Scotland, providing a voice for the voluntary health sector.
Background of a laptop, with insert of our Voluntary Health Scotland poster, and text in orange box that reads "Read our Learn about M.E. blog on becoming a finalist in Voluntary Health Scotland's annual poster competition!". Action for M.E. and Voluntary Health Scotland logos in bottom corners.
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Aug marked the end of our 2nd year of ink cartridge recycling which saw us raise £506.50, up from £224 in year 1. has kindly matched our 2nd year total of £506.50. This means the total raised for Action for M.E. so far stands at £1,461 with 24kg kept from landfill."
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One of our fantastic fundraisers has been recycling ink cartridges to raise money for us! He said: “The ink cartridge recycling scheme's now been running for 2 years in partnership with the Winterton and District Lions who match fund the value of ink cartridges...
Ink Cartridge Recycling Scheme. This scheme is match funded by Winterton and District Lions. £1,461 raised for Action for M.E. 24KG kept from landfill. Thanks to HITEK Electronic Materials Ltd for matching our second year total of £506.50. We accept: - all inkjet cartridges – original branded toners (no compatible brands). Winterton & District Lions logo. Action for M.E. logo.
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This is fantastic, Pippa, and so well deserved.💙
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So honoured to share that I’ve been named in this year’s #DisabilityPower100 as one of the most influential disabled people in the UK! Was too occupied with chatting away to take many pics but thank you @ShawTrust for this opportunity! More on IG: instagram.com/p/Cj0vh_6MQ0F/
Pippa in front of Disability Power 100 photo board in her wheelchair, grinning with one arm up in the air
Pippa and Martyn Sibley both in their wheelchairs in posh hotel lobby, smiling brightly
Pippa and Amit Patel stood next to each other in front of photo board, both smiling
Selfie of Pippa and Beth Kume Holland in the function room, both smiling with heads close together
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Not too late to sign up for this today... Spread some festive cheer, connect with our community and support fellow people with #MECFS by sending Christmas cards, and receiving if you chose. Lovely annual initiative and Elf like efforts from for #pwME 🎄
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If you'd like to send or receive a card from another #pwME this Xmas or know someone severely affected who would appreciate a card, complete this simple online form by 17.10.22, & from mid-October, we will contact you to let you know what to do next: ow.ly/lp3C50L1ESk
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If you're a parent, carer or family member of a child or young person with #MECFS, regardless of a diagnosis, we are here to support you.💙 We offer a FREE Family Support service, where our trained, knowledgeable & understanding officers can support to empower families.
Photo of family holding hands with orange border and text “we are here for parents or family members of a child or young person with M.E./CFS, regardless of a diagnosis” in white box. Action for M.E. logo in top corner in white quarter circle.
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