About Us
Information About Or Advisors, Values & Charity Progress
About the 25% M.E. Group
In the UK, around 200,000 people have M.E. While some recover, about 25%—roughly 50,000—remain severely ill and disabled long-term. Many become isolated, housebound, or bedbound. M.E. can affect anyone, regardless of age or background, often striking unexpectedly.
The 25% M.E. Group supports those with severe M.E., including housebound, bedbound, and wheelchair users, as well as their caregivers. No other organization focuses solely on this severely affected group.
Our website is dedicated to helping them. As a unique, nationwide volunteer-run group, we have two paid staff and several volunteers, most with M.E. ourselves. We offer various services to people with severe M.E.
Severe M.E. brings intense symptoms and disabilities, often leading to isolation. We work to reduce this by fostering member communication, encouraging participation, and providing newsletter content and information.
Our Patrons, Trustees & Advisers
| Role | Name | Details |
|---|---|---|
| Patron | Dr. Byron Hyde | Leading M.E. physician and researcher since 1985. Founded Nightingale Research Foundation. Authored key 1992 M.E./CFS book. Criticizes psychiatric roles in M.E. diagnosis. Strong advocate for M.E. recognition. |
| Medical Advisor | Dr. Nigel Speight, MA, MB, B Chir, FRCP, FRCPCH, DCH | Pediatrician with over 500 M.E. cases since 1984. Co-authored ICC. Retired in 2007 but active in locums. Expert in severe M.E. and child protection issues. Researches Lyme Disease links to M.E. Advises MEA and TYMES Trust. |
| Medical Advisor | Dr. William Weir, FRCP (Edin) | Retired infectious disease consultant. Specializes in M.E./CFS immunology. Assisted UK CFS/ME Working Group (1998-2002). Co-authored papers on severe M.E. malnutrition and Long Covid. Honorary Fellow of Doctors with ME. |
| Social Care Advisor | Tony Crouch | Social worker with experience in child and adult services. Advises TYMES Trust and 25% M.E. Group on social care issues. Served on NICE guideline committee and Forward ME group. |
| Honorary Medical Advisor | Dr. Betty Dowsett, MBChB, Dip Bact | Former microbiologist at Basildon and Thurrock Hospitals. Worked 40 years with M.E. patients globally. Advocated for equal treatment and NHS recognition of M.E. as a neurological condition. |
| Scientific Advisor | Dr. Vance Spence | Founded ME Research UK. Ex-NHS vascular scientist, rejoined Dundee University in 1997 to research M.E. after contracting it in 1980. Focuses on severe M.E. patients’ under-researched needs. |
| MCS Scientific Advisor | Malcolm Hooper, Ph.D., B.Pharm., C.Chem., MRIC | Emeritus Professor of Medicinal Chemistry. Advises on multiple chemical sensitivity in M.E. Critiques medical establishment’s handling of M.E., Gulf War Syndrome, and organophosphate poisoning. Advocates for scientific integrity. |
Group Annual General Meetings (AGM)
| Title | Summary | Categories | Link |
|---|---|---|---|
| The 25% ME Group: AGM Reports and Ballot Booklet (2024) | Purpose To summarize the Annual General Meeting (AGM) for The 25% ME Group, highlighting key agenda items, election results, and financial updates aimed at supporting individuals with severe ME. Key … | Annual General Meetings (AGM) | |
| The 25% ME Group: AGM Reports and Ballot Booklet (2023) | Purpose To summarize the Annual General Meeting (AGM) for The 25% ME Group, highlighting key agenda items, election results, and financial updates aimed at supporting individuals with severe ME. Key … | Annual General Meetings (AGM) | |
| The 25% ME Group: AGM Reports and Ballot Booklet (2022) | Purpose To summarize the Annual General Meeting (AGM) for The 25% ME Group, highlighting key agenda items, election results, and financial updates aimed at supporting individuals with severe ME. Key … | Annual General Meetings (AGM) | |
| The 25% ME Group: AGM Reports and Ballot Booklet (2021) | Purpose To summarize the Annual General Meeting (AGM) for The 25% ME Group, highlighting key agenda items, election results, and financial updates aimed at supporting individuals with severe ME. Key … | Annual General Meetings (AGM) | |
| The 25% ME Group: AGM Reports and Ballot Booklet (2020) | Purpose To summarize the Annual General Meeting (AGM) for The 25% ME Group, highlighting key agenda items, election results, and financial updates aimed at supporting individuals with severe ME. Key … | Annual General Meetings (AGM) | |
| The 25% ME Group: AGM Reports and Ballot Booklet (2019) | Purpose To summarize the Annual General Meeting (AGM) for The 25% ME Group, emphasizing the election process, financial updates, and advocacy efforts for individuals with severe ME. Key Points AGM … | Annual General Meetings (AGM) | |
| The 25% ME Group: AGM Reports and Ballot Booklet (2018) | Purpose To provide an overview of the Annual General Meeting (AGM) for The 25% ME Group, highlighting key agenda items, election results, and financial updates aimed at supporting individuals with … | Annual General Meetings (AGM) | |
| The 25% ME Group: AGM Reports and Ballot Booklet (2017) | Purpose To provide an overview of the Annual General Meeting (AGM) for The 25% ME Group, highlighting key agenda items, election results, and financial updates aimed at supporting individuals with … | Annual General Meetings (AGM) | |
| The 25% ME Group: AGM Reports and Updates (2016) | Purpose To provide an overview of the Annual General Meeting (AGM) for The 25% ME Group, highlighting key discussions, financial updates, and future plans aimed at supporting individuals with severe … | Annual General Meetings (AGM) |
Our Values
Medical rESEARCH
Advocating for Biomedical Research: We actively push for increased funding and support for rigorous, high-quality research into the underlying biological mechanisms of ME.
Awareness
Raising Public Awareness: The 25% ME Group conducts outreach efforts to educate the public about the debilitating nature of ME/CFS, seeking to dispel misconceptions and foster empathy for those living with this often invisible illness.
Policy Change
We advocate for policy changes that will improve access to healthcare, social services, and disability benefits for people with ME. This includes advocating for changes to diagnostic criteria, guidelines for medical practice, and the allocation of resources for ME specific programs.
Education
Empowerment Through Education: We foster a culture of education and empowerment, providing individuals with ME/CFS and their loved ones with access to accurate information, resources, and tools to navigate the complexities of the disease.
Care Support
The 25% ME Group acknowledges caregivers’ significant role in supporting those with ME/CFS. We offer guidance, resources, and advocacy to help alleviate caregiving’s emotional and practical burdens.