Press & Media

MEAction UK works with journalists, broadcasters, and content creators to improve public understanding of ME/CFS. This page provides media professionals with accurate information, expert contacts, and resources for responsible reporting on ME/CFS.

For Journalists and Media

Quick Facts About ME/CFS

• Prevalence: ME/CFS affects approximately 750,000 people in the UK
• Gender: About 75% of those affected are women
• Age: Can affect people of any age, including children
• Severity: 25% are severely affected, often housebound or bedbound
• Economic Impact: Estimated to cost the UK economy billions annually
• Recognition: Classified by WHO as a neurological disease since 1969

Key Messages

• ME/CFS is a serious, debilitating medical condition, not lifestyle fatigue
• The hallmark symptom is post-exertional malaise - symptoms worsen after minimal activity
• There is currently no cure and no proven effective treatments
• Many people face disbelief from healthcare professionals and society
• Research is severely underfunded relative to the disease's impact
• People with ME/CFS need better healthcare, support services, and research funding

Responsible Reporting Guidelines

Language and Terminology

Recommended terms:

• ME/CFS or myalgic encephalomyelitis
• People with ME/CFS (not 'sufferers' or 'victims')
• Post-exertional malaise (not 'post-exertional fatigue')
• Serious medical condition

Avoid:

• 'Chronic fatigue' alone (minimises the condition)
• 'Tired all the time' (trivialises the experience)
• Quotation marks around symptoms
• Language suggesting it's psychological or imaginary

Story Approaches

Helpful approaches:

• Focus on real impact on people's lives
• Include diverse voices (different severities, ages, backgrounds)
• Highlight systemic issues in healthcare and support
• Reference current research and medical consensus
• Show the strength and resilience of the ME community

Avoid:

• Miracle cure stories without evidence
• Suggesting people can 'push through' ME
• Focusing solely on severe cases without context
• Presenting disputed treatments as effective

Expert Sources

MEAction UK can connect journalists with:

• Patient Voices: People with lived experience of ME at different severity levels
• Medical Experts: Clinicians and researchers with ME expertise
• Policy Experts: Those familiar with healthcare policy and ME services
• Carers and Families: Those supporting people with ME
• Legal Experts: Specialists in disability rights and healthcare law

Note: We can arrange interviews that accommodate various accessibility needs, including written responses for those unable to speak.

Current Campaign Priorities

MEAction UK is currently focused on:

• ME/CFS Delivery Plan: Implementation of the government's delivery plan for ME services
• Research Funding: Securing increased biomedical research funding
• Healthcare Training: Improving ME education for healthcare professionals
• Severe ME Services: Developing specialist services for severely affected patients
• NICE Guideline Implementation: Ensuring proper adoption of updated clinical guidance

Statistics and Data

• UK Prevalence: Approximately 750,000 people 
• Global Prevalence: Estimated 17-24 million people worldwide
• Gender Distribution: 75% female, 25% male
• Age of Onset: Can occur at any age; peaks in teens and 30s-40s
• Severity Distribution: 25% mild, 50% moderate, 20% severe, 5% very severe
• Economic Cost: Estimated £3.3 billion annually to UK economy
• Research Funding: Historically less than £1 per patient per year

Press Releases and Statements

Recent press releases and statements from MEAction UK:

• Response to the ME/CFS Delivery Plan (July 2025)
• Statement on NHS e-learning modules
• #MillionsMissing 2025 event announcements
• Position statements on current ME research

For our latest press releases or to request statements on current issues, please contact our press team.

Photo and Video Resources

We can provide:

• Stock Photos: High-resolution images from #MillionsMissing events
• Infographics: Visual representations of ME/CFS statistics and information
• Video Content: Patient testimonials and expert interviews (with consent)
• Campaign Materials: Images from our campaigns and advocacy work

Usage Rights: All materials provided with clear usage rights and attribution requirements.

Interview Guidelines

When interviewing people with ME/CFS:

• Flexibility: Be prepared to accommodate health needs and energy limitations
• Alternative Formats: Offer written responses or brief interviews
• Accessibility: Consider phone/video calls, quiet environments
• Timing: Allow for rescheduling due to symptom fluctuations
• Respect Limits: Understand if someone needs to stop or take breaks
• Follow-up: Check quotes and context before publication

Common Story Angles

• Healthcare Challenges: Delayed diagnosis, inappropriate treatments, lack of services
• Research Needs: Underfunding, promising developments, patient involvement
• Policy Developments: Government plans, NHS changes, guideline implementation
• Personal Impact: Career changes, family effects, daily life adaptations
• Community Action: Patient advocacy, campaigns, #MillionsMissing events
• Severe ME: The most severely affected patients and their needs

Fact-Checking Resources

For accurate information on ME/CFS:

• NICE Guideline NG206: Official NHS clinical guidance
• WHO Classification: Listed as neurological condition (ICD-11)
• Government Publications: ME/CFS Delivery Plan and related documents
• Peer-Reviewed Research: Latest studies from reputable medical journals

Media Contact Information

For media enquiries, please contact MEAction UK:

• General Press Enquiries: Available through our contact form
• Response Times: We aim to respond within 24 hours
• Out of Hours: For urgent enquiries, please indicate in your message
• Expert Sources: We can connect you with appropriate spokespeople
• Background Briefings: Available for complex stories

Supporting Our Work

Media coverage is vital for raising awareness of ME/CFS. Responsible, accurate reporting helps:

• Increase public understanding of the condition
• Reduce stigma and misconceptions
• Highlight the need for better healthcare and research
• Give voice to an often invisible community
• Influence policy makers and healthcare leaders

We appreciate journalists who take the time to understand ME/CFS and report on it accurately.

Recent Coverage

Examples of recent responsible ME/CFS coverage include stories that:

• Used accurate medical terminology
• Included diverse patient voices
• Referenced current clinical guidance
• Highlighted systemic healthcare issues
• Avoided harmful stereotypes or misconceptions

We're happy to discuss what makes for effective ME/CFS reporting and can provide examples of best practice.