Action for M.E.
Action for M.E. is a UK registered charity headquartered in Bristol that provides free support services, holistic healthcare, peer-support forums, and research funding for people affected by Myalgic Encephalomyelitis, serving up to 1.35 million people with ME in the UK.
- Company typePrivate
- Founded1987
- HeadquartersKeynsham, United Kingdom
- Headcount11–50
- GTM typeB2C
- OfferingServices
What Action for M.E. does
Action for M.E. is a UK registered charity (charity number 1036419 in England and Wales; SC040452 in Scotland) headquartered in Bristol, providing support, healthcare, research, and advocacy services for people affected by Myalgic Encephalomyelitis (ME). The organization was described as a "small organisation that regularly punches above its weight" and operates a comprehensive suite of free support services — Information & Support, Family Support, peer-support forums (ME Friends Online for adults, Young People's Community for under-18s with buddy schemes, pen pals, and a Cheers e-magazine), a free counselling service for ages 13-18, and cost-recovery holistic healthcare services (doctor consultations, physiotherapy, counselling, chaplaincy). On the research and advocacy side, the charity co-leads DecodeME (world's largest genetic ME/CFS study with 26,000+ participants, partnered with University of Edinburgh and funded by MRC/NIHR), operates the Genetics Centre of Excellence and PRIME (research initiative on ME/CFS and Long Covid overlap), runs the Big Survey every five years, co-chairs the World ME Alliance, and leads the Parliamentary Champions Network advocacy programme.
The organization serves a UK market of up to 1.35 million people with ME or ME-like symptoms, segmented primarily into people living with ME (all ages and severity levels, including housebound and bedbound), unpaid carers/family/friends, and secondary segments of healthcare/social-care professionals and education professionals. Revenue is generated through diversified streams: individual donations (one-time and recurring), Supporting Membership (£21/year or £1.75/month; Lifetime from £500), Unity Lottery plays (£1 each with 50p returned to charity), legacy gifts and wills, community fundraising events (TCS London Marathon, Blue Sunday Tea Party which has raised £140,000+ since 2013), and healthcare service fees with bursary support for accessibility. Go-to-market is direct-to-beneficiary through website, social media (Facebook, Instagram, LinkedIn, YouTube, X, Pinterest), the Learn about ME podcast (10,000+ downloads), community forums, BBC Lifeline TV appeal, and parliamentary engagement.
The technology stack is largely standard digital communications: WordPress website, wpforo-hosted forums, YouTube video, Buzzsprout podcast hosting, and Microsoft Azure/Cloudflare-backed infrastructure. No proprietary AI/ML technology, no app, and no API are disclosed. Notable operational outputs include 169+ news articles and 7+ events on the website. Certifications include Disability Confident Employer, Fundraising Regulator registration, and SAFEcic membership. The charity has no parent company, no subsidiaries, and does not pursue equity funding, operating purely on charitable income.
Action for M.E. firmographics
Firmographics- Name
- Action for M.E.
- Legal name
- Action for ME
- Website
- https://actionforme.org.uk
- Company type
- Private
- Founded year
- 1987
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Short description
- Action for M.E. is a UK registered charity headquartered in Bristol that provides free support services, holistic healthcare, peer-support forums, and research funding for people affected by Myalgic Encephalomyelitis, serving up to 1.35 million people with ME in the UK.
- Ownership category
- akta.pro rank
Action for M.E. industry classification
Industry- Product category
- ME/CFS Chronic Illness Support Services
- NAICS
- Voluntary Health Organizations (813212), Individual and Family Services (6241), Other Individual and Family Services (62419)
- SIC
- Services-Social Services (8300), Services-Health Services (8000), Services-Commercial Physical & Biological Research (8731)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
- akta.pro secondary industry
- Patient Advocacy, Navigation & Access to Care (BPAGACAH)
Keywords
Where Action for M.E. is headquartered
LocationHeadquarters
- HQ city
- Keynsham
- HQ country
- United Kingdom
- HQ region
- Europe
Offices1 record
Markets served
Action for M.E. business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Infrastructure
Revenue model
- Donations: One-time and recurring donations from individuals supporting ME causes. Monthly direct debit giving encouraged for long-term impact.
- Supporting Membership: Annual membership from £21/year or £1.75/month providing InterAction magazine, membership card, and pin badge. Lifetime membership from £500 with additional benefits.
- Unity Lottery: Weekly lottery at £1 per play with 50p returning to support the charity's work.
- Legacies and Wills: Gifts in Wills providing long-term funding for research and support services. Legacy gift in 2022 funded blood research project at University of Edinburgh.
- Fundraising Events: Community fundraising events including TCS London Marathon, Blue Sunday Tea Parties, bake sales, and other community-organized events.
- Healthcare Services: Healthcare services provided to cover costs with bursary support available for those who cannot pay. Services include doctor consultations, physiotherapy, counselling, and chaplaincy.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Subscription | Monthly | Annual Supporting Membership |
| Subscription | Multi-year contract | Lifetime Membership |
| Unit Pricing | Pay-as-you-go | Unity Lottery |
Go-to-market motion3 records
Distribution channels5 records
Marketing channels9 records
Action for M.E. product offering
Product offeringCore offering
Action for M.E. is a UK charity that provides free support services (Information & Support, Family Support), holistic healthcare services (doctor consultations, physiotherapy, counselling, chaplaincy), and peer-support communities (ME Friends Online forum, Young People's Community) for people of all ages affected by Myalgic Encephalomyelitis. The charity also funds biomedical research initiatives such as DecodeME (the world's largest genetic study into ME/CFS) and undertakes parliamentary advocacy to improve understanding, healthcare, and welfare support for the ME community.
Product overview
Action for M.E. is a UK charity providing a comprehensive suite of support and advocacy services for people affected by Myalgic Encephalomyelitis. The core offerings include Free Support Services (Information & Support and Family Support), holistic Healthcare Services (Doctor, Physiotherapy, Counselling, Chaplaincy), peer-support forums (ME Friends Online for adults, Young People's Community and forum for under-18s), and a Young People's Counselling Service for ages 13-18. The charity publishes InterAction magazine (3x yearly for members) and produces the Learn about ME Podcast series. Research initiatives include DecodeME (world's largest genetic ME study), the Genetics Centre of Excellence, PRIME (exploring ME/CFS and Long Covid), and the Big Survey conducted every 5 years. Advocacy work encompasses the Parliamentary Champions Network, Low-energy Campaigning, World ME Alliance, and the Overlapping Illness Alliance. Resources include a comprehensive library of free downloadable factsheets covering living with ME, managing symptoms, work and welfare benefits, education, and professional development.
Differentiator
Problem solved
Functional benefit
Products and services
- Free Support Services Charity-provided free support including Information & Support (guidance on living with ME and signposting) and Family Support (guidance for parents and carers of children with ME), delivered by phone, email, and online to anyone in the UK affected by ME.
- Healthcare Services Holistic, individually tailored whole-person care for people with ME aged 11 and above, including Doctor consultations with GPs who have a special interest in ME, Physiotherapy, Counselling (for adults and young people aged 13-18), and Chaplaincy. Services charge to cover costs with bursary support available.
- ME Friends Online forum Peer-support online forum connecting adults affected by ME to reduce isolation and provide mutual support, where users share experiences and find community with others who understand the condition.
- Young People's Community Peer-support community for under-18s with ME offering a safe online forum, free online events including Breaking Isolation Workshops, monthly Cheers e-magazine, pen pal service, buddy writer scheme, and birthday cards.
- Young People's Counselling Service Free counselling service for young people aged 13-18 with suspected or diagnosed ME, offering up to 12 sessions (30 or 50 minutes each) with Counsellors who understand ME. Accessible via self-referral, parent/carer referral, or professional referral.
- Supporting Membership (Annual and Lifetime) Membership programme offering InterAction magazine (3 issues per year), membership card, and pin badge. Annual membership from £21/year or £1.75/month; Lifetime membership from £500 one-time with additional benefits including a quarterly CEO update.
- Unity Lottery Weekly lottery played at £1 per play with 50p of each £1 returning to Action for M.E. to support its work.
- Gifts in Wills (Legacy Giving) Programme enabling supporters to leave a gift in their Will to fund long-term ME research and support services. A 2022 legacy gift funded a blood research project at the University of Edinburgh.
Quantifiable outcome
- Podcast reached 10,000+ downloads
- +3 more outcomes
Companies that use Action for M.E.
Customer profileNamed customers5 records
Segments4 records
Ideal customer profiles5 records
Action for M.E. technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Action for M.E. partnerships and signals
Strategic signalPartnerships
Ten partnerships are on record, tiered major, core and moderate.
- UK Government's Women and Equalities CommitteemajorAction for ME called to give oral evidence to the Women and Equalities Committee inquiry Equality at work: flexible working, regarding ME and flexible working.
- University of EdinburghcoreCo-leading DecodeME study (world's largest genetic study into ME/CFS) in partnership with University of Edinburgh. Also collaborating on Genetics Centre of Excellence, LOCOME Project, and Audrey Ryback's mitochondrial research funded by legacy gift.
- World ME AlliancecoreGlobal collaboration between ME organisations across the world, co-Chaired by Action for ME CEO Sonya Chowdhury. Works with international partners including Australian charity Emerge.
- ForwardMEcoreGroup founded by Countess of Mar, with Action for ME as active member. Simon Chandlers has taken leadership role. Collaborative advocacy group.
- Overlapping Illness Alliance (OIA)corePartnership of organisations working together to advocate for people with overlapping chronic illnesses including ME.
- PrecisionLifemajorCollaborating on LOCOME Project investigating biomarkers and disease mechanisms shared between ME/CFS and Long Covid.
- Parliamentary Champions NetworkcoreNetwork of MPs who are 'go-to' individuals when engaging with Government and building support for ME campaigns. Includes Stuart Andrew MP (Shadow Secretary of State for Health and Social Care) and Baroness Scott.
- ME AssociationmoderateAgreement on estimates of ME prevalence in UK (up to 1.35 million people). Collaborate on research and advocacy.
- ME/CFS Priority Setting PartnershipmajorCollaborative process completed in 2022 to identify Top 10+ priorities for ME research, guiding future research funding in UK and beyond.
- BBC LifelinecoreNational TV appeal featuring real-life stories of people with ME to raise awareness and funds. Presented by Montell Douglas with reach across BBC One and iPlayer.
Scale indicators7 records
Recent moves6 records
Expansion highlights5 records
Action for M.E. competitors and assessment
Company assessmentDirect peers
- Solve ME/CFS Initiative: US-based nonprofit advocating for ME/CFS research and providing patient resources. Comparable as a disease-specific nonprofit combining advocacy, research funding, and direct patient support services in the ME/CFS space.
- Emerge Australia: Australian national charity providing support, information, and advocacy for people with ME/CFS. Direct peer as a national ME-focused nonprofit and member of the World ME Alliance alongside Action for M.E.
- Open Medicine Foundation: Global nonprofit funding and conducting collaborative research into ME/CFS and Long Covid. Comparable as a research-driven ME/CFS nonprofit with international scientific collaborations and donor-funded programmes.
- ME Association: UK-registered charity providing information, support, and research funding for people with ME/CFS. Directly comparable as a UK-based ME-focused nonprofit offering helpline services, publications, and funding for biomedical research.
- #MEAction: International ME/CFS advocacy and patient-empowerment network. Direct peer offering online community support, advocacy campaigns, and educational resources for the global ME community.
- ME Research UK: UK charity dedicated to funding biomedical research into ME/CFS. Comparable as a peer disease-specific research charity competing for similar donor pools and research grant funding in the UK.
Emerging players
- Long Covid Support: UK-based charity supporting people with Long Covid. Comparable given Action for M.E.'s PRIME and LOCOME work exploring ME/CFS and Long Covid overlap, with shared patient populations and emerging policy focus.
- Long Covid Kids: UK charity supporting children with Long Covid. Comparable for youth-focused support services, counselling, and educational resources overlapping with Action for M.E.'s Young People's Community offering.
Others
- Forward-ME: UK coalition of ME charities and patient groups including Action for M.E. as an active member. Comparable as a collaborative advocacy platform pursuing parliamentary and policy outcomes for the ME community.
- Chronic Illness Inclusion: UK advocacy organisation for people with energy-limiting chronic illnesses including ME. Comparable for its focus on accessibility, welfare benefits, and societal inclusion for the same beneficiary population.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat5 records
Key risks5 records
Key highlights6 records
Customer concentration
Action for M.E. social profiles
Digital presenceAction for M.E. financial estimates
Financial estimateRevenue estimate
Valuation estimate
Action for M.E. leadership team
Management profileNumber of profiles
Profiles1 record
Action for M.E. funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Action for M.E. M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Action for M.E.
What does Action for M.E. do?
Action for M.E. is a UK charity that provides free support services (Information & Support, Family Support), holistic healthcare services (doctor consultations, physiotherapy, counselling, chaplaincy), and peer-support communities (ME Friends Online forum, Young People's Community) for people of all ages affected by Myalgic Encephalomyelitis. The charity also funds biomedical research initiatives such as DecodeME (the world's largest genetic study into ME/CFS) and undertakes parliamentary advocacy to improve understanding, healthcare, and welfare support for the ME community.
Is Action for M.E. a public or private company?
Action for M.E. is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Action for M.E. founded?
Action for M.E. was founded in 1987. It employs 11 to 50 people.
Where is Action for M.E. based?
Action for M.E. is headquartered in Keynsham, United Kingdom, in the Europe region.
How does Action for M.E. make money?
Six revenue lines are on record. Donations are the primary driver. The others are supporting Membership, unity Lottery, legacies and Wills, fundraising Events and healthcare Services.
Who are Action for M.E.'s main competitors?
Direct peers on record are Solve ME/CFS Initiative, Emerge Australia, Open Medicine Foundation, ME Association, #MEAction and ME Research UK. Emerging players are Long Covid Support and Long Covid Kids. Others are Forward-ME and Chronic Illness Inclusion.
Does Action for M.E. have an API?
No public API is recorded for Action for M.E..
What industry is Action for M.E. in?
Action for M.E.'s product category is ME/CFS Chronic Illness Support Services. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS), with a secondary code of BPAGACAH, Patient Advocacy, Navigation & Access to Care. Its NAICS code is 813212 and its SIC code is 8300.