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Do you have questions or thoughts about ME/CFS self management?Why is it necessary?
What is it?
Can anyone help me?
Join us as we share information, experiences and ideas about self-management and find out what is available to help online and within Wales.
Register now!The event will include:
A presentation
Discussion groups in Welsh and English
A Rest Break
Registration ends 12pm on Thursday 27 November
Find out more about the project: ME Voices Wales – have your say!
Sign up to be added to the e-news mailing list: mevoiceswales@gmail.com
On Carers Rights day all unpaid carers are encouraged to find out what your rights are, so you can feel confident to ask for what you need, as well as to challenge, when your rights are not being met.
More information about your rights from Carers UK
Carers UK report explains the pressures carers are under: Cost of caring
Short Breaks Scheme and Carers Support Fund Welsh Government extends funding until March 2029
The Aneurin Bevan University Health Board (ABUHB) provides services to Torfaen, Caerphilly, Newport, Blaenau Gwent and Monmouthshire.
Since April 2025 they have been offering a full-blown Symptom Management service for people with ME/CFS, long COVID, Fibromyalgia and other post-viral illnesses.
“The Symptom Management service will support people and their family/carers at all ages and all stages of their condition to understand and manage symptoms that they may be experiencing” – both adults and children from mild to very severe. The adult service is open to people over 16.
The Recovering from Illness paediatric service webpages tells Education providers about common symptoms young patients experience but does not include the key characteristic of ME/CFS: Post Exertional Malaise/ Post Exertional Symptom Exacerbation PEM/PESE). Instead they say that energy batteries reduce in size when ill or in pain, and if children rest too much they may become deconditioned and exerience ‘boom and bust’.
This contradicts the NICE guideline 1.2 which says that all 4 symptoms (PEM, debilitating fatigue, cognitive difficulties and unrefreshing sleep/sleep disturbance are found in children, as well as adults, and needs careful management. Deconditioning is not an inevitable part of ME/CFS.
The Symptom Management Service web pages for adults define ME/CFS as “an energy-limiting, long-term condition characterised by a range of symptoms, with one of the main characteristics being post-exertional malaise or PEM, which is “a worsening of all symptoms which can be triggered immediately by any form of exertion (physical, emotional, cognitive or sensory) or may be delayed by an onset of 24-72 hours.”
The Services accept referrals from any health care professional, and people can also self-refer by form, telepone or email, receiving help to complete the process, if necessary.
Self-Referral forms 03330 415379 Abb.symptommanagementservice@wales.nhs.uk
ME/CFS is “an energy-limiting, long-term condition”
No. People can access the service as and when they need via self-referral forms so is centred around the person’s needs.
Consultant (Infectious Diseases)
Paediatrician
Occupational Therapists
Physiotherapists
Psychologists
Exercise Professionals including National Exercise on Referral (NERS)
The Adult Service does not diagnose, confirm diagnoses or take on medical management of participants, but they ‘support and navigate on-going medical support with other services within the organisation to ensure appropriate care is provided.’
You can choose to have an assessment at any point, or simply use the information on the webpages, and attend conditions and/or management sessions. There is a one and a half hour introduction to ME/CFS.
The service is designed to:
Children and young people are given a clinic appointment where the young person and their family meet with the team and discuss the challenges the young person is facing and how this is affecting their life. The young person and their family take home a bespoke intervention plan developed together by the team and the family. That may include:
“We can work with people to support development of individualised plans both in terms of their path through our services and in terms of energy management, managing setbacks and relapses, managing stress and wellbeing and coping with brain fog.
This includes family/carers as appropriate for the individual and family/carers as individuals themselves.
We work to NICE 1.5.2 guidelines but do not prescribe medicines as we are a non-medical model and are therapies led.”
The Service will work with people to utilise any tools they feel comfortable with to self-assess the development of symptoms and function; this will vary dependent on individual capacity and affordability. [FUNCAP, DePaul Symptom Questionnaire (DSQ), EQ5D5L, Visible app etc.]
The services use activity logs and self-assessment sheets.
Service development?The Symptom Management Service invites service users and others in the ME community to help improve services.
Community Co-Production Group – meets 3rd Thurs of the month online via Teams
Symptom management service website
WAMES welcomes the ABUHB Symptom Management Service’s decision to offer support to people of all ages and levels of severity, with the much-needed option of referring themselves into the service. The Adult Team met with WAMES a number of times to learn from our experience and we are delighted they have set up a regular Co-production Group to continue listening to users and prospective users!
We encourage the Paediatric Service to update the information about ME/CFS on their website and ensure the support they offer is evidence based and meets the needs of patients and their families.
NB The Symptom Management Service website provides a wide range of information and links to services for a variety of medical conditions. Be aware that not all of it is relevant for people with ME/CFS and PEM/PESE. Proceed with care!
Betsi Caldwaladr University Health Board has launched an expanded service for people with ME/CFS:
‘The new Living Well Service provides access to a wide range of health professionals and support, whilst also maintaining dedicated support for people with ME/ CFS. This service is an expansion of the long COVID service, through Welsh Government funding.”
“The new service now provides:
ME/CFS is a neurological and complex condition affecting multiple systems in the body. Diagnostic criteria for ME/CFS list a range of symptoms including cognitive impairments, orthostatic intolerance, pain, fatigue, difficulty sleeping and more.
The hallmark characteristic of the illness is post-exertional malaise (PEM), which is an abnormal response to physical, cognitive, social and/or emotional exertion leading to additional symptoms or an exacerbation of ongoing symptoms.
80% of ME/CFS occurs after an infection including COVID-19. (from Living Well website)
All adults of any severity can apply for support
You can be referred by a GP, Allied Health Care Professional, Hospital Consultant or Social worker BUT you can also refer yourself.
Self-referral form: English or Call 03000 840007 or email
No. Access for as long as you need and self refer back in if desired
GP
Physiotherapists
Occupational therapists
Dietitians
Clinical or counselling psychologists
Advanced Clinical Practitioners
Speech and Language Therapist
Consultant Clinical Psychologists
What happens once my application is accepted?
You will meet with someone, usually virtually or by phone, or at home if you are severely affected, to assess your diagnosis and support needs. You will be given the opportunity to join the 8 week ME/CFS course where you can learn and share with others with ME/CFS.
You may also wish to join some of the general courses or consult professionals about a range of issues such as mobility, aids, employment, diet, specific symptoms etc. There may also be a need to refer you for further investigations, especially if you have multiple conditions or a symptom is particularly troublesome. Help will be given to devise a management or care plan.
The range of support outlined in the NICE ME/CFS guideline NG206 (1.10)
DePaul Symptom Questionnaire (DSQ)
EQ5D5L – Health Related Quality of Life Assessment – Questionnaire
Activity logs and worksheets
Symptom diaries
Do you have questions or thoughts about ME/CFS self management?
Why is it necessary?
What is it?
Can anyone help?
Join us as we share information and ideas about self-managament and find out what is available to help online and within Wales.
Book the date – more information to follow!
Find out more ME Voices Wales – have your say!
Sign up to be added to the e-news mailing list: mevoiceswales@gmail.com
Welsh Senedd Debate was due to take place about Severe and Very Severe ME on 15th October.
Adam Price MS was due to lead the Members Debate on ME in the Welsh Senedd, but on Sunday he suffered a close family bereavement.
The Senedd Business Committee has therefore agreed to allocate a new date for it: Wednesday 26th November – Put it in your diary!
We know that this understandable and unavoidable delay will be a disappointment to people with ME in Wales, and to their families, friends and carers, but we’re grateful that we have a new date for which we can prepare.
Adam stresses that personal stories carry great weight in such events – they are the lived experiences which help politicians connect with the lives of their constituents, their voters.
Other Senedd Members can take part in the debate, including yours, and can add weight to Adam’s presentation.
So, in the meantime, if you’d like to get in touch please email: severeme.cymru@gmail.com or jan@wames.org.uk
More info: Senedd debate
Adam Price, Member of the Welsh Senedd (MS), has been sucessful in getting a debate in the Senedd about provision for Severe and Very Severe ME. Please ask your MSs to support the motion, and join the debate on Wed 13 Oct 2025 around 3.50-4.50 PM.
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.
The debate will also raise questions about ME in general so please support it.
How can you help?
J
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]
BBC: Access All Podcast: Is the DNA of people with ME different?
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
Guardian: Science Weekly Podcast: Can science crack the mystery of ME?
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
LBC: Natasha Devon Phone In – DecodeME Results
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
Newstalk: Prof Luke O’Neill: The science of chronic fatigue syndrome
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
