Supporting people with severe & very severe ME

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:

• Be unable to speak or tolerate light, sound, touch, or movement
• Rely on assistance for feeding, toileting, and hygiene
• Require care at home or via telehealth, as hospitalisation can be harmful
• Experience life-threatening complications like malnutrition

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.

DNA study reveals ME/CFS Neuro-immune causes

The DecodeME team announce that the initial analysis of 15,579 DNA samples is complete, and they have important news to share.

Main findings:

Your genes contribute to your chances of developing ME/CFS.

• People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population. These lie in many places across the genome, and do not impact just one gene.
• Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS.
• The signals discovered are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease.
• At least two of the signals relate to the body’s response to infection. Other signals point to the nervous system, one of which researchers previously found in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS. These signals align with how people with ME/CFS describe their illness.

Professor Chris Ponting, DecodeME lead investigator, University of Edinburgh 

“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.” 

Read more at #DecodeME: Initial DecodeME DNA Results

Reports and comments:

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

Daily Mail: Scientists FINALLY crack the mystery of chronic fatigue syndrome – major breakthrough reveals cause, sparks new hope for effective treatment

Edinburgh University: Key genetic differences found in people with ME/CFS

Financial Times (paywall) – Chronic fatigue patients have different genes, study finds

Guardian: Scientists find link between genes and ME/chronic fatigue syndrome

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 syndrome

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 (paywall): ME is a real illness, genetic study shows

Times: Breakthrough genetic study offers treatment hope for ME patients

Llais Cymru invites us to tell them about the health & social care we want

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:

• Know and understand their rights
• Know what to expect from health and social care services
• Know the part they have to play in their own health and care

“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:

• Completing the We Want survey
• Book a 1:1 conversation with them
• Host your own conversation with your community or group with the help of their self-facilitation pack
• Attend a Llais event
• Contact them directly: wewant@llaiscymru.org

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.

Delivery plan for ME/CFS in England

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:

• research
• attitudes and education
• living with ME/CFS
• language

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:

Research

• 4 problem areas identified – low capacity in researrch community, need for health & care research, little bioledical research funding, perception of bias about prioroties.
• plan to explore links with other post-acute infection conditions
• ambitions to stimulate further research in this area
• build a vibrant ME/CFS research community
• ensure those with lived experience are at the heart of research
• announce new research investments

Attitudes and education

• 6 problem areas are identified – patients not believed or treated equally, professionals attitudes are largely unknown, the impact of ME/CFS is not acknowledged, NICE guideline not widelty utilised, little healthcare professional training, little training for other professionals
• Further e-learning modules will be developed and shared throughout NHS England, NHS websites, Medical Schools Council, Dept of Education, networks, British Association of Social Workers, GMC, RCP
• Ways to raise public awareness will be considered
• Ways to assess public sector professionals’ current attitudes will be considered
• Developing a shared learning resource on ME/CFS, which could be held in an education hub will be considered
•  A ‘Language Matters in ME/CFS’ guide will be co-produced

Living with ME/CFS

Key areas to address from the draft plan are restated:

• quality of life
• support for children and young people
• provision of health services
• provision of adult social care
• welfare
• employment support

Key actions:

• NHS England will co-design resources for systems to improve services, including the development of the template service specification for mild and moderate ME/CFS
• NICE has published a Clinical Knowledge Summary topic on ME/CFS
• The 10 Year Health Plan set out 3 shifts in service provision: hospital to community; analogue to digital; sickness to prevention.
• A National Neighbourhood Health Implementation Programme (NNHIP) has been launched
• Led by NHS England, neighbourhood multidisciplinary teams for Children and young people YP could help ME/CFS

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

Reactions to the Plan – charities:

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

Reactions to the Plan – media

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 

Reactions to the Plan: Publishing

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

The Star: What is ME and the symptoms of chronic fatigue syndrome as government announces new NHS care plan for patients

#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

Ask your MS to support a debate in the Senedd

Welsh Senedd Debate on Severe and Very Severe ME

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?

• Please email / write to / phone your local and regional MSs to ask them to drop by the Severe ME Difrifol Cymru stall next Tuesday 11am-2pm in Y Farchnad. Download the booklet for the event
• Tell them about the Motion ( SeneddMotion8884) and why it’s important to you that they put their support behind it. Download template email
• You can find out who your MSs are and their contact details at this link

Severe ME Difrifol Cymru is coordinated by Severe ME champion Rob Messenger and supported by WAMES.

Will we climb the big hill today?

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.

Share old skills or learn new ones

Why volunteer ‘behind the scenes’?

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.

What are Trustees?

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!

What does a Treasurer do?

• pay out and receive money
• keep records so we know how much money we have

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.

What does a secretary do?

• support the Chair to organise 1-3 virtual meetings a year of the Management Team (trustees)
• help the Team keep policies and practices legal and up to date

Please note:

• Training can be arranged & expenses will be paid
• Most tasks can be carried out from home
• You will get to know the team virtually
• You don’t have to be knowledgeable about ME
• The post will give useful experience to use old skills or learn new ones to add to your CV

Join us to give a voice to people affected by ME in Wales!

Short-term opportunities in WAMES

Can you spare a few hours or a few days, in ways and at times that are suitable for you?

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:

• turn our reports into an Annual report that shows our impact
• get us set up on one or more digital fundraising platforms
• help us to make the most of Google Workspace – our digital office
• set up a survey
• be a temporary social media manager to give volunteers a holiday
• turn information into a report or manual
• help us do the annual update of policies and keep on top of charity law
• research a topic for information to help our advocacy and awareness raising
• arrange a meeting and produce notes (minutes)

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

A time for reflection – 2025 AGM

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.

What sums WAMES up?

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:

• Welsh Government ministers
• Welsh Government Health Departments
• Women’s Health Cross Party Group
• NHS Executive & Clinical Networks
• Health Boards’ Adferiad service teams
• Cardiff & Vale Chronic Conditions Co-Production Group etc.
• NHS 111
• Alliances – such as the Wales Neurological Alliance, World ME Alliance, Fair Treatment for the Women of Wales, Disability Benefits Consortium
• Third Sector Groups – such the Wales Voluntary Council and local Voluntary associations
• Wales & Midlands Capita Stakeholders
• Advocacy groups – such as Llais Cymru, regional advocacy groups
• Charities and support groups providing support to people with ME and carers

So, we are still ‘working for ME’ but more than ever are using our ‘voice for ME’!

The future

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

• NHS Advocacy
• ME Voices project
• New WAMES Website
• Information sharing (social media, blogs, leaflets etc)
• Supporting Welfare reform actions
• Recruiting behind-the-scenes volunteers

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!

A big thank you to the ME community in Wales for all your support! 

Caring About Equality

During Carers Week 2025, 9-15 June, WAMES is joining the call for a fairer society for all our unpaid carers.

The Caring about Equality report  highlights the inequalities facing unpaid carers in the UK today and the steps needed to create a fairer society for carers.

Unpaid carers are the backbone of our society, propping up fragile health and social care systems and providing essential care to friends and family who need their support. Despite carers’ huge contribution to our communities, many carers still feel undervalued and unsupported.

Inequalities can negatively impact all aspects of carers’ lives, putting carers at a greater risk of poor mental and physical health, social isolation, financial hardship, and poverty. Far too often, carers miss out on opportunities in their education, careers, or personal lives, just because of their caring role.

The inequalities that carers face mean that:

• 70% of carers have a long-term physical or mental health condition, disability or illness compared to 59% of non-carers
• the poverty rate for carers is 50 % higher than for people who do not provide care
• young adult carers are 38% less likely to achieve a university degree than their peers
• 1 in 4 carers of working carers have had to take on a lower paid or more junior role.
• Carers should have the same life chances and opportunities as people without caring responsibilities. To make this happen, action is needed right across the board, with government, schools, colleges, universities, workplaces and health and social care services all having a vital role to play.

Together let’s strive for an equal society, where carers can fulfil their own aspirations and lead healthy and financially secure lives.