Most people don't see the reality of ME - our BBC Lifeline Video is helping to change that 📹
Thank you to @montytrackstar for presenting, helping bring these stories to life and shine a light on what life with ME can really look like 🧡
Living with chronic pain herself, Montell has helped us reach new audiences and raise vital awareness through this appeal.
Watch now on BBC iPlayer to hear from those affected and learn more about the work we’re doing to drive research forward and support people with ME (link in bio!)
#MECFS #pwME #MyalgicEncephalomyelitis #BBCLifeline
📢 Major funding secured for Sequence ME & Long Covid, a DecodeME project.
On #WorldMEDay, we are thrilled to share that our landmark research study, Sequence ME & Long Covid, has received £4.75 million in funding from the UK government, signalling a transformative step towards uncovering the biological roots of ME/CFS and Long Covid.
Led by DecodeME's Management group, Sequence ME and Long Covid is the world’s largest, comprehensive whole-genome sequencing dataset. This funding will support the second phase of the study, allowing us to start sequencing 6,000 DNA samples previously collected through DecodeME.
Building on DecodeME, the wider project aims to analyse the entire genetic code of 9,000 people with ME/CFS and 9,000 people with Long Covid to identify genetic causes and uncover the biological mechanisms driving these conditions.
This work brings together Action for ME, @edinburghuniversity , @decodemestudy , @oxfordnanopore , and the European Bioinformatics Institute (EMBL-EBI), alongside people with lived experience at the heart of the project.
We have secured this funding as a partnership, and it will go directly to the University of Edinburgh and distributed to relevant partners to fund the sequencing work.
This is a major milestone and a moment of real hope.
We are incredibly grateful to the UK government, our project partners, other funders (the Schmidt Initiative for Long Covid, @complexdisordersalliance (CODA), the @solve_cfs , and @weandmecfs ). Thank you also to everyone whose DNA samples, support and lived experience have made this possible 🧡
🔗 Read more about the announcement through the link in our bio.
#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #MEResearch #DecodeME
Thanks to our wonderful supporters, we can provide our vital support services to people with ME and their families.
Last year, over 75% of people who accessed our Information and Support Service felt they had an increased understanding of their rights and options.
“I was overwhelmed by the support I received. I had no knowledge such support existed and it has enabled me to feel more empowered.”
Your support helps us change the lives of people affected by ME. 🧡
Donate now through the link in our bio.
#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #DonateNow
📹 Behind the scenes of our BBC Lifeline appeal - only two days left of our campaign!
Over the past few months, people with ME, families, carers, crew and staff all came together to help tell the reality of life with ME.
From contributors using valuable energy to take part in filming, to adapting shoots around symptoms and travelling across the UK to hear people’s stories - a huge amount of care went into making this film possible.
Thank you to everyone who shared their experiences so openly and honestly, and to everyone who has supported the campaign so far by watching, donating and sharing.
⌛ With just two days left of our campaign, there’s still time to watch our Lifeline appeal and help fund vital research and support services for people affected by ME (link in bio!)
#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #BBCLifeline
What does ME really take away?
For many people, it means losing the ability to work, study, socialise, exercise or even leave the house.
For some, it means being unable to sit upright, eat properly, or take part in everyday life.
Through our BBC Lifeline appeal, we’re raising vital funds to support people with ME and accelerate biomedical research into this devastating condition.
🧡 Please watch our video and consider donating through the link in our bio.
#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #BBCLifeline
What does yesterday's funding announcement for Sequence ME & Long Covid mean for the future of ME research?
In his latest blog, Simon McGrath explores why this landmark £4.75 million investment matters, what makes the study so significant, and how advanced DNA sequencing could help uncover the biology behind ME and Long Covid.
“This is an extraordinary moment for ME/CFS. It used to get by on the dregs of research funding, but now has a study that will probably be the largest using this hi-tech technique for any single disease. It is also the result of a lot of work by a lot of people.”
🧬 Read the full blog through the link in our bio.
#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #DecodeME #MEResearch
Do you know what ME feels like?
ME is a debilitating, serious illness, yet people affected by ME face stigma and a lack of understanding.
Together, we can change this 🧡
Turn awareness into action by supporting people with ME through our BBC Lifeline fundraising appeal (link in bio!) 🔗
#MECFS #MyalgicE #MyalgicEncephalomyelitis #pwME #BBCLifeline
Around 25% of people with ME are severely or very severely affected.
They are often left house or bed bound, unable to speak or tolerate light and sound, need assistance with daily care and may experience intense pain.
Despite their level of disability, the lack of awareness of education about ME among healthcare professionals means that many people with severe and very severe ME are denied the care they so desperately need. In some cases, severe ME can be life-threatening.
Following the delay to the development of a very severe ME service, as part of ForwardME, we are working with other charity representatives, clinicians and people with lived experience in ongoing discussions with the DHSC on the development of a national template service specification for ME. ForwardME's involvement includes inputting into clinical coding, medicines management, and the needs of those most severely affected by ME.
On this #WorldMEDay, we are joining the World ME Alliance and organisations across the globe in calling for urgent education and action for those with severe ME 🧡
#EducateME #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #SevereME
🧬Join our Sequence ME & Long Covid Webinar
Following the announcement of major funding (£4.75 million) from the UK Government, join us to find out more about what Sequence ME & Long Covid aims to do, what this funding means for the study, and what happens next. There will also be a Q&A session with Action for ME CEO Sonya Chowdhury and Professor Chris Ponting from the University of Edinburgh.
📅 26 May, 14:30-15:30pm GMT
📍 Register through the link in our bio
🎥The webinar will be recorded and we will share the recording afterwards.
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis
Caroline's ME has changed her life, forcing her to manage crushing fatigue.
We're investing in major research that will boost understanding of ME/CFS and lay the groundwork for scientists studying it in the future.
Find out more at the link in dhscgovuk's bio.
📢 NEW from the @worldmealliance – their one-page explainer on their Medical Education Hub!
This #WorldMEDay, help improve awareness by sharing your story of why medical education matters using the hashtag #EducateME and ask healthcare professionals to read the explainer on how the Medical Education Hub can help.
The Hub contains trusted, evidence-based resources to help healthcare professionals supporting people with ME.
ME is a chronic, debilitating condition that affects at last 67 million people worldwide, but the lack of training and education among clinicians can cause delayed diagnoses, harmful or inappropriate treatments, and repeated experiences of stigma and disbelief.
👉 Read and share their one-page explainer, linked in our bio.
#EducateME #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis
📢 Today is #WorldMEDay
ME is a seriously disabling condition impacting at least 67 million people worldwide. Medical education is lacking in most countries and patients are regularly denied the care they deserve.
Consequences are significant:
- delayed diagnoses;
- harmful or inappropriate treatments;
- repeated experiences of stigma and disbelief;
- patients not warned of the risks of Post-Exertional Malaise (PEM).
-a suicide risk six times higher in people with ME
Around 25% of people with ME are severely or very severely affected. Many are left housebound or bedbound, unable to speak or tolerate light and sound, need assistance with daily care and may experience intense pain. Too often, the most severely affected are denied the care and support they desperately need, and in some cases severe ME can be life-threatening. There is an urgent need for healthcare professionals to better understand how to safely support and treat people with ME.
To help close the education gap the @worldmealliance has created a Medical Education Hub. This contains trusted, evidence-based resources including full guidelines, continuing professional development and severe ME. The hub aims to foster a future where care is grounded in science, and shaped by dignity and compassion.
Find out more through the link in our bio.
Share your story and the World ME Alliance's Medical Education Hub using #EducateME
#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis
