Media resources
WAMES welcomes enquiries from the media about all matters related to ME/CFS in Wales.
Please contact:
Sylvia Penny
Tel: 029 2051 5061
E-mail:
We can provide information about:
WAMES
The Welsh Association of ME & CFS Support or WAMES for short is the only Welsh national charity. WAMES was formed in 2000 when some ME campaigners realised that the national ME charities did not understand devolution, nor had an interest in providing information in the Welsh language. More about WAMES
Talking about ME/CFS
ME means Myalgic Encephalomyelitis and is the patients’ preferred term for their illness. CFS or Chronic Fatigue Syndrome has historically been the preferred term of professionals. NICE, in their 2021 guidelines uses the term ME/CFS.
‘Chronic fatigue’ is a symptom of many conditions including flu, MS, Parkinson’s Disease, and not a diagnosis and should never be used to illustrate or describe the neurological condition of ME/CFS in the title, body or strap line of any news article. More about ME/CFS
Long COVID
Long COVID symptoms can be similar to those of ME/CFS and approximately 51% of people with long COVID meet the diagnostic criteria for ME/CFS. The two terms are not however interchangeable though the experiences and needs of both patient groups may overlap.
Prevalence
The exact figure affected by ME/CFS is unknown as many are undiagnosed by the NHS and consistent records are not kept. The past estimate of 250,000 in the UK and 13,000 in Wales was revised in 2024 to 390,000 in the UK and 20,000 in Wales (Ponting) though more research is needed as this is still an underestimate.
Gender ratio
ME/CFS affects everybody, recent research highlights more women than men are affected – maybe as many as 4:1 (75-85% female).
Disability
Many people with ME/CFS self-identify as disabled. ME/CFS is recognised under the Equality Act 2010
Severity
25% of people with ME/CFS are severely affected and are housebound and/or bedbound – totally unseen, unheard and forgotten by the majority of the NHS and the world.
Young people
At least 1,300 children in Wales under 16 are affected by ME/CFS – 10% of the total with ME/CFS. 25% of those will be severely affected and missing out on key developmental influences – education, friends, family and social life.
ME/CFS is the largest reason for absence from school.
Symptoms
The key characteristic of ME/CFS is post exertional malaise (PEM) and could be described as worsening of symptoms following minimal mental, physical or emotional activity. In children symptoms can vary. Stomach aches, swollen glands and headaches can be the first sign something is wrong. More about symptoms
Research
Research into ME/CFS has not been funded at the same rate as other chronic illnesses. UK researchers work on the genetics of the illness has the potential to help the global search for a diagnostic test and treatments. More about research
For any and all media enquiries please contact:
Sylvia Penny Tel: 029 2051 5061