“20 years on from my own diagnosis, her kids were offered Pacing. 14+ years on they are still sick and mainly housebound and sometimes bedbound, and their days are spent trying to conserve small energy reserves.” - Rowan, speaking of her Sister's children, who also have ME
We know that significant change is needed for people with ME, and it's needed now.
At Action for ME, we know that change doesn't just happen - it has to be made. That's why, last week we launched our Summer Appeal, hoping to raise £25,000 to fund vital change for people of all ages affected by ME.
Those supporting the campaign are helping us to achieve:
Throughout the campaign, we've been sharing the stories and experiences of people with ME, highlighting the devastating effects ME has on people's lives and just how urgently real, positive change is needed. You can read some of these stories, using the links below:
We also asked the ME community to share the changes they want to see for ME on social media to help raise awareness.
The video below is from Peter, who has long-campaigned for people with ME, calling for an urgent increase in medical research funding.
There's still a little over 4 days left to donate to our Summer Appeal and help bring much-needed change for people with ME 🌻
To donate and find out more about how the money raised during the appeal will be used to create change, click the button below! We understand that not everyone will be in a position to donate and that's okay - instead, engaging with our posts on social media is a great way to show your support for the Appeal!
Our Professional development for ME resource signposts to online learning, training and resources for health, social care, education and other professionals, including our Learn about ME podcasts and webinars.
Produced in partnership with the ME Association, #ME Action Scotland and Dr Nina Muirhead, these remain free to access, sharing insight and experience from patients and health professionals on key ME-related topics. All complement Dr Muirhead’s free, highly-rated CPD-accredited module on ME, based on clinical case studies and the latest biomedical evidence, alongside reading and references to support further learning.
Dr Muirhead co-presents our Learn about ME webinar, shared with GPs to help them better diagnose and manage ME, alongside Action for ME doctor Robin Kerr, a GP with over 10 years’ experience in general practice.
Dr Kerr also features on our most recent podcast Learn about severe ME with patient advocate Helen Brownlie, who works with the 25% ME Group supporting people with severe ME. To represent the voice of people living with severe ME, who are too unwell to speak for themselves, it also includes readings from international ME and Long Covid writing group, the Pillow Writers. These extracts are read by Laura Anne Collier, an #MEAction Scotland volunteer and Avril McLean, Senior Practitioner at Action for ME. In total, our 12 Learn about ME podcasts have been downloaded more than 7,400 times.
People with ME taking part in our regular mindfulness meditation workshops have been telling us how much these mean to us them. "They help create a sense of calm and community and encourage further mindfulness outside of the sessions too," said one attendee. "It’s good to have that time of being together and taking time for self-care."
Mindfulness is a way of accepting the present moment without judgement. Accessing these sessions may help some improve their ability to deal with the stress of living with a long-term health condition like ME.
Action for ME volunteer Alice, who co-facilitates the workshops with our colleague Avril McLean. says: "As a qualified mindfulness meditation instructor and ME/CFS sufferer, I enjoy running an online meditation group on behalf of Action for ME. This enables me to bring a group of sufferers and carers together, letting them know they are not alone, and hopefully offers some monthly respite while teaching mindfulness techniques which may help with symptom management. My sessions aim to promote relaxation and an overall sense of wellbeing, which is my way of giving back to the ME community."
If you would like to know more about these sessions, please get in touch. In addition to our online workshops, Alice has made this 20-minute Mindfulness meditation film for anyone living with or caring for someone with ME which can be accessed any time. It starts with a brief description of what Mindfulness is and how it might benefit people. After this there is a short practice to allow you to settle and focus on your breathing; followed by a guided meditation with a mantra.
On 14 May, the APPG's on ME and Long Covid, both chaired by Jo Platt MP, both met at their first joint-meeting of the year.
Stephen Timms, Minister for Social Security and Disability, joined the first part of meeting which focused on the Government's proposed welfare reforms.
Attendees raised serious concerns regarding the impact the proposed reforms, citing evidence from the recent survey, developed by Long Covid Support, Action for ME, ThereforME, and ME Local Network, with Jo also sharing her own personal experience of Long Covid.
Following a request from Jo, the Minister asked for a formal request to meet with her and the Secretariat, alongside including them in the Stakeholder Group he is convening to help redesign PIP, to be put in writing.
The rest of the meeting focused on research updates from the ME and Long Covid fields, with attendees seeing presentations from:
Among a number of conclusions, including Jo highlighting the lack of NHS support for severely affected patients, members agreed to write to Ministers Dalton and Vallance to outline the groups concerns and proposed solutions.
You can read the formal minutes and view the recorded presentations, here.
The groups are due to meet again later in the year and updates will be shared on this as soon as available.
The ME Genetics Centre of Excellence is a virtual network bringing together researchers and people with personal experience of ME. It is overseen by a Partnership Board co-chaired by Sonya Chowdhury (Action for ME) and Prof. Chris Ponting (University of Edinburgh). The board includes researchers from different fields and people with lived experience, working together to shape and strengthen ME research.
The network works to address key challenges in ME research, such as limited funding and a lack of coordination. The focus is on genetics as a starting point, with the goal of identifying diagnostics and treatments and expanding into wider areas of research. The Partnership Board currently oversees several collaborative research projects and initiatives, while also ensuring meaningful involvement of people with ME.
The Genetics Centre of Excellence launched its new website this month. It includes more information about the Partnership Board members, ongoing projects, and past activities such as webinars and conferences.
Find out more, here.
On Friday 06 June, we held a webinar to share the latest updates in research linked to the Genetics Centre of Excellence.
Dr Audrey Ryback, Research Fellow working under Professor Chris Ponting at the University of Edinburgh, provided updates on her work, including:
Audrey holds the first Clare Francis Postdoctoral Fellowship awarded by Action for ME.
Attendees also heard from members of the PrecisionLife team, Steve Gardner (CEO), Jason Sardell (VP, Population Genetics), and Krystyna Taylor (VP, Portfolio Strategy), on new findings from their ME and long Covid research, including results from the LOCOME project (delivered in partnership with Action for ME and the University of Edinburgh).
The topics included:
A live Q&A session was then held, featuring our speakers and Public and Patient representatives, including Helen Baxter (PPI representative for the LOCOME project and the Genetics Centre of Excellence Partnership Board).
You can watch the full recording of the webinar on our YouTube channel, here.
This World ME Day, we supported the World ME Alliance in changing the narrative around ME and getting the facts right.
The Alliance created the below graphics to challenge 6 common myths around ME, aiming to improve awareness and understanding of the condition across the world.
Ahead of World ME Day, the World ME Alliance also updated their ME factsheet, which is also available in a number of different languages.
We also joined 27 other organisations in signing a joint statement, organised by the #ThereForME campaign, addressed to the UK Government calling for the Delivery Plan on ME/CFS to be backed with the resources it needs.
The number of organisations who signed the statement clearly demonstrates the unity that exists within the ME community around the importance of the Final Delivery Plan to be properly funded, particularly with strategic research funding.
In addition, we continued to raise support for our campaign, launched by Action for ME, ME Research UK and ME Association based on the work of a group of academics, practitioners, clinicians, charity representatives and people with lived experience of ME who have been working together to input to the cross-government Delivery Plan on ME/CFS.
The campaign calls on the MRC and NIHR to urgently develop an ME/CFS, Long Covid, and Post-Infectious Disease research platform to enable us to work in partnership with patients and stakeholders to develop and promote innovative solutions to building research capacity for patient benefit.
You can read more on the proposal, here.
