Action for M.E., Bristol Videos

TRIGGER WARNING - Sensitively reported by Lisa Summers, this clip deatures content that some may find upsetting - severe ME; assisted dying Thank you to BBC News Scotland for sharing the clip of their coverage on Monday lunchtime of Edina's story featuring a clip from our CEO, Sonya, and interview with our Decode ME Study partner, Prof Ponting. We acknowledge the complex ethical considerations surrounding assisted dying and respect the diverse perspectives both within the community and more widely. Our priority remains our commitment to supporting individuals with M.E., pushing for more research funding and the improvement of care for people with M.E. If you need support, Action for M.E.'s information, support, advocacy and healthcare services can be contacted by calling 0117 927 9551 or email [email protected]

“Useful, informative, supportive, friendly advice is such a rare and wonderful thing, thank you so much!” Our free Information & Support service supported over 900 people affected by ME last year and has been described as a “lifeline” by many. Giving £10 could help the service reach even more people with ME, offering vital one-to-one support. Scan the QR code or visit out website to donate: https://www.actionforme.org.uk/support-us/donate/ Thank you for your support 🧡 #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis

To wrap up the 40th anniversary of Volunteers' Week, our CEO, Sonya, shares a video to thank our incredible team of volunteers! "I know I speak for all of us here at Action for M.E. when I say that we're excited to embark on another year of working with our dedicated network of volunteers, which includes our Trustees, and thank you again for all that you do" #MECFS #pwME #MyalgicE #Volunteering #VolunteersWeek

🎙️ Learn about ME & occupational therapy podcast. In the latest Learn about ME podcast, we discuss how Occupational Therapy can support people living with Long Covid and ME/CFS with pacing, taking a person-centred approach. Our guests on this episode include Kate Davies, Occupational Therapy Team Lead in NHS Grampian; and Corrine, a patient with Long Covid. 🎧 Listen now: https://www.buzzsprout.com/1717775/15101383-episode-11-learn-about-me-and-occupational-therapy #pwME #MECFS #MyalgicE #LongCovid #LearnAboutME

Three peaks. Three causes. 24 hours? 🏔️⏱️ No problem. In the early hours of World ME Day, Sunday 12 May, Led by Joe Lyons, CEO of the West Ham United Foundation, three teams reached the summit of Snowdon, completing their staggering challenge, having conquered the highest peaks in Scotland, England, and Wales in under 24 hours: a challenge covering over 23 miles and 3,000 meters of vertical ascent. The teams climbed through night and day, snow, rocks, and broken boots, but spirits remained high throughout the challenge, helped by clear skies, breath-taking scenery, and the three amazing causes they were walking for. The Three Peaks Challenge may be complete, but the fundraising challenge continues. Any donation, big or small, will go towards helping to improve the lives of people with ME, and unlocking the potential of young talent. 🔗 You can find the donation page here: https://ow.ly/gR3C50RG6JI From all of us here at Action for M.E., West Ham United Foundation, and LTSB – a huge thank you and congratulations to the three teams and everyone who has helped to make this challenge possible. #HammersHeroes #ThreePeaksChallenge #Charity

Following today's Westminster Hall debate on ME/CFS our CEO, Sonya Chowdhury, has provided the following video update. We have also released an organisational statement which can be found here: https://www.actionforme.org.uk/news/westminster-hall-debate-an-update-and-statement/ Links to watch the debate and access the full transcript can also be found using on our website, using the link above. #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #WestminsterHall

Meet Hannah! Hannah has joined our team as one of our Young People's Counsellors and we're delighted to have her on board. Hannah joins the team with over 10 years experience working in a variety of settings and has previously spent time working with young people with ME and supporting them through their counselling journey. Want to find out more about our free Young People’s Counselling Service? Visit our website: https://ow.ly/lfQJ50QVWUQ Less than two weeks until the service launches! #pwME #MECFS #MyalgicE #LivingWithME #YoungPeople #Counselling #FreeCounselling

Meet Caroline! Caroline has recently joined the team as one of our wonderful Young People’s Counsellors. Caroline joins us with plenty of experience working with young people and people with M.E., and we thought this would be a great way for you to hear about her approach to counselling, and how she likes to spend her free time! Want to find out more about our free Young People’s Counselling Service? Visit our website: https://ow.ly/lfQJ50QVWUQ #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #Counselling #YoungPeople

Here's a summary update video from Carol Monaghan MP, following yesterday's APPG meeting and AGM. Key points from the video: - The APPG has officially been reconstituted - The APPG agrees to sign Science for ME's open letter to Cochrane, requesting urgent action to be taken on the 2019 ME/CFS Exercise Therapy Review - An update was provided on the 2022 'Rethinking ME' report and its use in development of the Implementation Plan - The group, in particular, would like to focus on severe M.E. during the course of the next year - The group are excited to receive future updates from the DecodeME study. #pwME #MyalgicE #MECFS #MyalgicEncephalomyelitis

It’s not too late to join Team Action for M.E. for the Bath Half Marathon 2024! Back to its original March date, the Bath Half is fast approaching and we need your help to raise vital funds for #pwME. Last year’s team raised an incredible £8,000! We are re-sharing team member Ellie’s training video, sharing why she decided to run for Action for M.E. Interested in joining? Click here: https://ow.ly/KFPh50QAB5K #pwME #MECFS #MyalgicEncephalomyelitis #MyalgicE #Fundraising #HalfMarathon

Huge thanks to Gaby Roslin for having our CEO, Sonya Chowdhury and one of our service users on to talk about ME. Jo shares what a lifeline Action for M.E. has been for her, while Sonya highlights the importance of work to find treatments. Check out the full interview, covering stigma, support and more, starting at 50mins in: https://www.bbc.co.uk/sounds/play/p0gtr6cf #MyalgicE #MyalgicEncephalomyelitis #LongCovid

A huge thank you to everyone who has donated so far to our Big Give #ChristmasChallenge. Your generosity has been incredible, but we still need your help to hit our target of £100,000! Your donation can help us be a lifeline. Every penny will go towards... ✨ Continuing to provide direct services to #pwME of all ages. ✨ Improving accessibility to our doctors, physios and counsellors, specially trained to support #pwME. ✨ Reducing isolation through our peer support services. ✨ Ensuring #pwME feel listened to and understood. ✨ And helping us invest in ground-breaking research, ensuring that the voices of people drive this forward. Donate now via tinyurl.com/BigGiveCC23 and see your donation DOUBLED. One donation, TWICE the impact. #GivingTuesday #2023BigGive #MyalgicEncephalomyelitis #BigGiveforME

The Big Give #ChristmasChallenge is live! See your donation DOUBLED from today until 12pm on Tuesday 5 December or until match pot runs out! More than 280,000 people are affected by #MECFS. There is still no test. No effective treatment. And no cure. 1 in 4 are severely affected often unable to leave their house or their bed with little support to manage their disabling symptoms, facing serious stigma. Donate now via tinyurl.com/BigGiveCC23 and help us be a lifeline for #pwME. One donation, TWICE the impact. #GivingTuesday #MyalgicEncephalomyelitis #2023BigGive #BigGiveforME

Episode 10 of our Learn About M.E. podcast is live! 🎙️ In this episode, we hear from Consultant Respiratory Physician Dr Binita Kane, a specialist physician treating patients with #MECFS and #LongCovid, and Helen Gibson, whose teenage daughter has #MECFS. Together, they offer their experiences and invaluable insights. Listen now via our website: https://ow.ly/txsz50QaIev All our podcast episodes are available on Buzzsprout, Apple and Spotify. #MEpodcast #HealthcarePodcast #MyalgicEncephalomyelitis #HealthcareProfessionals #Paediatrics Royal College of Paediatrics and Child Health Royal College of General Practitioners #GIRFEC University of Dundee The Royal College of Emergency Medicine Royal College of Physicians of Edinburgh Edinburgh Medical School Royal College of Physicians University of Aberdeen University of Glasgow Royal College of Nursing University of St Andrews Chartered Society of Physiotherapy

The All-Party Parliamentary Group (APPG) on #MyalgicEncephalomyelitis held a meeting yesterday (15 November) focusing primarily on research. Carol Monaghan MP, Chair of the APPG on M.E., shares some details. The agenda included a look at the progress of the Delivery Plan on #MECFS, a presentation by Prof Chris Ponting on the Decode ME Study and insights into the Genetic Centre of Excellence for M.E. co-led by Action for M.E. and people with lived experience. A group of MPs and peers actively engaged in a discussion concerning the challenges surrounding the condition. The meeting minutes will be made available on the APPG on M.E. website after they've been approved. You can now view the approved meeting minutes from June 14, 2023: https://ow.ly/OAG350Q8gw2 #MECFS #pwME #MyalgicE #MEResearch #APPGonME

Ellie Bulmer shares why she is participating in the 2023 Bath Half Marathon in support of #pwME. To follow Ellie’s fundraising journey and to support the rest of our Bath Half team on their 13.3-mile run, please visit our team’s JustGiving page: https://ow.ly/uvCZ50PEjHV There are still spaces available on #TeamAFME for this year’s Bath Half, so please spread the word if you know someone who might be interested in taking on this challenge! For more information and to apply, visit https://ow.ly/l7m250PuKzz, or contact our dedicated fundraising team at [email protected]. #MECFS #pwME #Fundraising #BathHalf #MyalgicE #MyalgicEncephalomyelitis

Our CEO, Sonya Chowdhury, was featured on the latest episode, "Securing Change For The Future", of the Freshrb C I C “Everyday People Talking Health” Podcast. Sonya discusses #LongCovid, #MECFS and our projects, such as Decode ME Study and the work of the World ME Alliance. When asked by Kondwani, Director of Freshrb C I C "How has it been for you coming from not knowing about #MECFS to now knowing so much and advocating for it?" She responded: “I feel dreadfully sad that people face so many challenges. Not only have you been struck by this really horrific illness and having to deal with everything that that entails and on top of that you then struggle to get access to healthcare. You struggle to have teachers in schools that understand you. And I just think that’s shocking. And it evokes a feeling of compassion but also a real drive to try and do as much as I can for the time that I’m with the charity, probably for evermore, given my personal connection as well as professional one to do as much as I can to try and challenge that and counter it in whatever way I can.” 🎙️ Listen to the podcast now: - Freshrb: https://ow.ly/Ik2A50PnzP3 - Spotify: https://ow.ly/O7hl50PnzP6 - Other platforms: https://ow.ly/jO9V50PnzP5 #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #ChronicIllness #HealthPodcast #MESupport

Yesterday (14 June), the All-Party Parliamentary Group (APPG) on #MyalgicEncephalomyelitis held a meeting with a primary focus on #SevereME. Chair of the APPG on M.E., Carol Monaghan MP, shares some details. The agenda included presentations from our CEO Sonya Chowdhury, Prof David Strain, BACME and the 25% M.E. Group. A Q&A session was held where various aspects of #MECFS were discussed, particularly around the treatment of #pwSevereME and their experiences in the clinical environment. Unfortunately, due to technicalities, the meeting was unable to be live-streamed. However, we are continuing to investigate this for future meetings. Once approved at the next meeting, the minutes will be posted on the official APPG on M.E. website: https://ow.ly/U7an50OOX0C We will also share the full minutes from the APPG on M.E. meeting on the 10th of May; we are currently waiting for an amendment to be made. #MECFS #pwME #MyalgicE #pwSevereME