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Severe ME Day was established by the 25% Group on August 8th was chosen in remembrance of Sophia Mirza, a severe ME patient who died of the disease. Today the group uses the day to:
honour the strength of spirit of all those who have endured and continue to endure decades of suffering and profound physical dysfunction and yet receive little, or no recognition or help, but rather continue to experience gross misrepresentation and misinterpretation of their illness and profound disability.
WAMES joins the WMEA in featuring a short video that marks ‘A day in darkness’
As well as leaving many with ME/CFS confined to their homes, bedbound, or even immobile, the severe manifestation of the illness also can result in a single person experiencing 50 – 100 symptoms. MERUK gives an introduction to the profound effect these symptoms can have.
Many activities this year aim to highlight the need for better understanding and education about the severe and very severe experience of ME.
Unpaid carers – 25% ME Group recognises the essential role of unpaid carers in supporting the severely affected as they can be sensitive to stimuli and cannot cope with care workers.
Clinicians’ resource – The World ME Alliance have produced a new resource to help physicians learn about caring for peple with severe ME in crisis situations: Supporting People with Severe and Very Severe ME/CFS: A Resource Guide for Clinicians.
Severe ME Art project – The 2025 Severe ME Artists Project displays work from 100+ people via a video compilation, writers gallery, and individual images, and acknowledges the grief for those unable to practice their art due to illness and those who have had to change the way they continue their craft.
Music – Buy Kara Jane’s posthumous second album, In Limbo, released on Severe ME Day 8th August 2025, along with her previous album, It’s Still M.E. Kara’s dream was to raise £100,000 for ME research. Her family are continuing her fundraising efforts. https://karajanesings.com/
Poem – Ffion marks Severe ME Day with a poem about the turnaround that ME brings to life:
I always made the most of every day …
Now, I must live the very least I dare
Photos – The ME Association are sharing people’s #MEInMyRoom Photos
Whitney – From his bed Whitney describes life with severe ME and sends a message of support:
“To all those living in silence and darkness. Today we take a moment in silence and darkness to honor your courage, your bravery, your resilience, your strength, and we acknowledge your profound suffering, agony and loss.”
WAMES and the World ME Alliance are offering a key resource for Severe ME day on 8 August 2025
Supporting people with severe & very severe ME: a resource guide for clinicians – read
All over the world, Severe ME patients struggle to get the medical care they need. Too often they are recommended inappropriate psychiatric hospitalisation and dangerous treatments such as Graded Exercise Therapy, while at the same time being denied vital interventions such as intravenous hydration or tube feeding.
This resource is intended for use in crisis situations
This resource is intended for use in crisis situations — particularly when hospitalisation is being considered — and can be handed to clinicians and healthcare providers by patients or carers. It is designed to support self-advocacy when people with Severe ME may be too unwell to speak for themselves, and to guide healthcare professionals toward safer, more appropriate care.
Around 25% of people with ME/CFS are housebound or bedbound. Those most severely affected may:
Despite this extreme level of disability, many healthcare providers are unaware of how to meet their needs safely. This guide begins to fill that gap.
Please download, read, and share this guide with healthcare professionals in your network. More information and version here
On Severe ME Day, we remember the millions of people living in darkness. This resource is for them.
Main findings:Your genes contribute to your chances of developing ME/CFS.
“This is a wakeup call. These extraordinary results speak the language of people with ME/CFS, often recounting people’s ME/CFS symptoms.
DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research. With our participants we have built an extraordinarily rich DecodeME data set, to which we continue to offer data access.
We especially welcome researchers whose work is relevant to the eight signals we have identified, and who could bring their expertise to bear in highly targeted studies that would produce further ME/CFS insights and ultimately treatments.”
BBC Radio Wales: The Phone – Oliver Hides talked to Prof Ponting and patients [from 36 min 20]
BBC Radio 5: Your voice – Nicky Campbell talked to Prof Ponting and patients [From 1h 4mins]
Daily Express: Groundbreaking genetic study sheds new light on causes of ME and chronic fatigue syndrome
Edinburgh University: Key genetic differences found in people with ME/CFS
Financial Times – Chronic fatigue patients have different genes, study finds
Guardian: Scientists find link between genes and ME/chronic fatigue syndrome
Health Rising: Decoding ME: Big Stakes Genetics Study Puts ME/CFS on Firm Biological Foundation
Huff post: I Was Medically Gaslit For Years – This Study Finally Proves ME/CFS Is A Real Illness
Independent: The key genetic difference ME sufferers have from others – and what it means
Live science: Huge study of ME/CFS reveals genetic ‘hotspots’ linked to the debilitating syndrome
New Scientist: Key genetic differences found in people with chronic fatigue
New York Post: Debilitating illness once dismissed as ‘yuppie flu’ actually has genetic causes: study
Newsweek: Study finds genetics could cause ME/CFS
The News International: UK scientists discover distinct genes in chronic fatigue patients
Science: Possible genetic clues to ME/chronic fatigue syndrome identified in massive study
Science Media Centre: Expert reaction to unpublished preprint on the DecodeME genome-wide association study of ME/CFS
The Standard – People with ME have key genetic differences to other people, study finds
Telegraph : ME is a real illness, genetic study shows
Times: Breakthrough genetic study offers treatment hope for ME patients
Times: Lack of ME research because of ‘medical misogyny’, says top scientist
Llais Cymru is a Welsh Government body with the remit to promote patients’ interests to NHS Wales and social care in Wales.
“We’re here to make sure your views and experiences are used by decision-makers to plan and deliver better health and social care services. And when things go wrong our independent and trained complaints advocates can support you to make complaints.”
Their new initiative invites us all to have ‘a national conversation about creating clearer, fairer and more person-centred services.’ They want to build ‘a fairer and more balanced relationship between people and the Health and Social Care services they use.’
“Too few people know their rights, what they can reasonably expect from services, or how they can play their own part in staying well and that is why Llais is leading The Health and Social Care We Want: a national conversation about creating clearer, fairer and more person-centred services.”
Their Aim: to make it easier for people to:
“At the same time, Llais want to support services to better meet people’s needs by listening to real experiences and using what they hear to make things better. It’s about building trust, reducing confusion and creating services that work for everyone.”
The more people and organisations who are speaking up for people with ME in Wales the better, so WAMES encourages people living with ME, and their carers, to let Llais Cymru know what YOU want from the NHS and Social services!
You can get involved in a number of ways, including:
WAMES, and the other organisations in the ME Voices Wales project will be responding, but they want to hear from individual services users as well.
The conversation runs until 30 September 2025, after which Llais aim to publish a report with key findings, recommendations, and a framework for change.
After a long wait – over 3 years – the strategy for ME/CFS in England has been published by the DHSC in consultation with a wide range of stakeholders. The Parliamentary Under-Secretary of State for Public Health and Prevention, Ashley Dalton acknowleges that:
“we have not been able to include every ask of that group in the final delivery plan, which must of course reflect what is practically feasible and financially viable and affordable.”
As with the Interim delivery plan it focuses on:
It includes a list of actions to be taken, measures of success or indicators of progress and proposed delivery timelines. This applies only to England but Welsh Government civil servants have been monitoring the development of the plan and WAMES will be discussing it with them and with NHS planners.
Key points from the plan:
Key areas to address from the draft plan are restated:
Key actions:
Reception to the Plan amongst patient and research charities in England has been muted. It is seen as a positive first step but lacking in commitment, funding and ways to ensure immpplementation and accuracy of future actions.
Read the Delivery Plan, Announcement and letter from UK Government Minister and written statements in Parallel Parliament
Read about the Interim Delivery Plan
Action for ME: DHSC publishes the Final Delivery Plan on ME/CFS
MERUK:Delivery Plan for ME/CFS Published – Research Details
ME Association: The ME Association’s statement on the Government’s Delivery Plan on ME/CFS – The ME Association
BBC: ME/CFS Final Delivery Plan Video: Sarah Boothby and Dr Binita Kane.
BBC radio Scotland: Delivery Plan & ME/CFS
Channel 4: ME Delivery Plan – will it make a difference? Video: Nick Benton tells his story of severe ME & hopes for a clear care pathway. Dr Binita Kane is looking for better education & Sir Sajid David expresses disappointment the plan doesn’t go further.
ITV: Government pledges to ‘transform care’ for people with ME
Healthcare Management: NHS professionals to be trained on ME and chronic fatigue syndrome
Hospital management: UK announces plan to improve care for ME/CFS patients
Independant: ME care reforms promised after woman’s tragic death
Mirage: Support Surge for Chronic Fatigue and ME Patients
Medscape: After a Long Delay, ME/CFS Strategy Finally Arrives
Pulse: GPs to support delivery of ME/CFS care under new NHS plan
National World: Government’s delivery plan on ME ‘disappointing’ says charity
#ThereForME: Responding to the Final Delivery Plan for ME
Times: Doctors to be trained on ME in NHS plan to transform care
Times: My daughter died from ME. This new plan fails her and others like her
Virology blog: David Tuller interviews Dr Charles Shepherd [19 mins]
Adam Price, Member of the Welsh Senedd (MS), has sponsored a motion for debate in the Senedd about provision for Severe and Very Severe ME. The motion has been tabled for consideration by the Business Committee which allocates debate slots. Now we need to get as many MSs as we can to support the motion, to give it the best chance of being selected.
Severe ME Difrifol Cymru is an informal group of people with Severe / Very Severe ME and their carers who have got together to support Adam’s motion for debate.
They have managed to book a place in ‘Y Farchnad’ (‘The Marketplace’) on Tuesday July 15th, which is an opportunity once a month for groups to have a stall and display in the Senedd, and to talk to MSs face to face about their cause.
They’ve been required by the Senedd to submit a logo – so they’ve had to come up with one! – and are busy putting together a banner and other display materials.
How can you help?
Severe ME Difrifol Cymru is coordinated by Severe ME champion Rob Messenger and supported by WAMES.
A new book by Mair Squire and Cara Smart is designed to help children understand more about the adults in their lives who are living with chronic illness.
It was originally inspired by the struggles of a parent living with long COVID but it can also apply to many more health conditions, including ME.
In the book, the ‘little one’ is frustrated when their ‘big person’ is too ill to climb a hill with them.
The big person tries to explain that concrete legs and brain full of scramble eggs make them feel quite sick and unable to climb or play every day.
The book is aimed at 5-7 year olds and is available on Amazon in paperback for £8.99. Mair and Cara want it to be widely available so you can download it here in pdf [2MB]:
Will we climb the big hill today?, by Mair Squire, Cara Smart
Or, Mair will accept an order for multiple copies at cost price, £3.50, plus (£2+) postage. Let Jan know if you wish to take up this offer.
Much of the work of WAMES involves ‘speaking out’, advocating and supplying information about ME.
That is not possible without people working in support roles like secretary, treasurer and trustee.
The Secretary and Treasurer keep the organisation functioning legally and they are part of the management team, called Trustees. Trustees share the responsibility for making decisions about what needs to be done and steer the organisation in the best direction. No charity can operate without them!
If you can easily balance your personal finances and enjoy planning and budgeting, then please consider doing the same for WAMES. Any additional knowledge and skills you might need can be picked up along the way.
Please note:
Join us to give a voice to people affected by ME in Wales!
From time to time WAMES needs short-term help or expertise for one-off or occasional activities, projects or events. Because there is so much we could be doing to speak up for people with ME, many admin tasks get overlooked, or take time away from much needed advocacy and support work. Some tasks are essential. Some, if completed, could really help us be more productive!
Volunteering doesn’t always mean giving up lots of time. All WAMES volunteers work from the comfort of their own homes and mostly at times that suit them. There are many opportunities available to suit even the busiest of people and also those with limited energy.
Examples of flexible volunteering tasks:
Let us know what your expertise or enthusiasms are and we can discuss the right opportunity for you! Maybe YOU could supply the missing piece in our work for people with ME in Wales.
Contact us for a chat: sharon@wames.org.uk jan@wames.org.uk
Every year we are required to hold an AGM and it always casts a bit of a shadow. It causes so much extra admin as we gather information for reports.
But every year we are reminded that it can be difficult to ‘see the forest for the trees’. Most of the year we are so involved in multiple activities that it is good to take a step back and assess what we have been involved with, what has borne fruit and what needs to happen next.
Our tagline or slogan has been ‘Working for ME in Wales’. And let’s face it, making the case for people with ME to be given helpful services has always seemed like hard work! ME is not easy for people to understand and the lack of medical support has not helped us to be taken seriously.
The remit we were given 25 years ago by the local support groups was to be ‘a national voice for ME in Wales’ and we have focussed on speaking out on behalf of the tens of thousands of families affected by ME/CFS and post-viral illness.
This year we decided to highlight that, and we have changed our tagline (or slogan) to ‘A voice for ME in Wales’. To make that voice more effective we also joined with other groups and individuals in the ME Voices Wales Project.
How is WAMES speaking out for ME?
We are always looking for ways to communicate accurate information about ME and about the need for better services. We have been providing information about ME and talking to lots of people that are either responsible for service development or supporting people with ME, who can advise us or influence that. In the last few years that has included:
So, we are still ‘working for ME’ but more than ever are using our ‘voice for ME’!
Although progress is slow, we are pleased to see a greater awareness of ME/CFS develop in the NHS, a recognition that we need a national strategy, and the beginnings of services. Since ME/CFS was made a priority action in the Women’s Health Plan 2025-35, it has become a wider topic of discussion in the NHS and we will continue to contribute the ME voice to all those discussions.
During 2025-26 WAMES aims to continue to prioritise
There are many more issues we would like to be addressing but we need to be realistic. We are always keen to hear your stories and concerns and we welcome new volunteers to help us speak out. But, not every job is on the front line. We can only continue to speak out if there are people supporting the charity and its advocacy work behind the scenes. Watch this space for more information!
