Charities & Voluntary Organisations
The ME Association
The ME Association:
We’re here for you! For news, events, medical information and the latest research developments about Myalgic Encephalopathy also known as M.E. Visit our popular website to find out more.
Website: https://meassociation.org.uk/
Email: Contact@meassociation.org.uk
Phone (head office): 01280 818963
PHYSIOS FOR ME
Physios for ME are a group of physiotherapists in the United Kingdom with a special interest in ME. Our aims are to: Educate and inform physiotherapists, support people with ME to feel confident in seeking physiotherapy treatment, support physiotherapists to provide safe and appropriate treatment and further explore treatment options through research and discussion.
WEBSITE: https://www.physiosforme.com/
EMAIL: physiotherapyforme@gmail.com
25% ME Group
The 25% M.E. Group is a unique nationwide community based voluntary group. We have three paid members of staff and a number of volunteers – most of whom have severe M.E. We provide a range of services to people affected by severe M.E. (Myalgic Encephalomyelitis).
WEBSITE: www.25megroup.org
EMAIL: enquiry@25megroup.org
PHONE: 01292 318611
ME Research UK
The principal aim of ME Research UK is to commission and fund high-quality scientific (biomedical) investigations into the causes, consequences and treatment of ME/CFS. The charity has a mission to inform, influence and invest in ME research globally.
WEBSITE: www.meresearch.org.uk
EMAIL: contact@meresearch.org.uk
PHONE: 01738 451234
Action for ME
We provide an Information, Support and Advocacy Service for children and adults with M.E., families and professionals, online peer support forums and workshops. We raise understanding and awareness of M.E., deliver medical education and tackle stigma and misunderstanding through awareness-raising and influencing activity. We also fund and deliver research.
Website: www.actionforme.org.uk
Email: questions@actionforme.org.uk
Phone: 0117 927 9551
Tymes Trust (The Young ME Sufferers Trust)
Tymes Trust is a voluntary organisation uniquely dedicated to children and young people with ME. Established 1989; registered charity 2000. Provides information and support for families, professionals, schools. Advice Line, website with free publications. A high value is placed on our individual approach and independence. Queens Award For Voluntary Service 2010
Website: https://www.tymestrust.org
Email: Please use contact form on above website.
The ME Trust
The ME Trust is the only charity providing clinical services and support to people with ME/CFS, their families and carers. We offer whole person care, treating everyone as an individual with needs that are physical, mental and spiritual. Our multi-disciplinary team includes a doctor, nurse, physiotherapist, counsellors and chaplains. Services can be accessed remotely via phone, video-call or email. Home visits are available for those who are severely affected and housebound.
WEBSITE: www.metrust.org.uk
EMAIL: admin@metrust.org.uk
PHONE: 0208 7080036
reMEmber (The Chronic Fatigue Society)
reMEmber is a registered charity dedicated to securing good services (particularly biomedical services) for people who have CFS/ME. We also give help and advice to patients, families and carers via meetings, our website, telephone and e-mail.
WEBSITE: www.remembercfs.org.uk
EMAIL: me_cfs@hotmail.com
PHONE: 01273 831733
BRAME (Blue Ribbon for Awareness of ME)
The primary aim of BRAME, both in the UK and worldwide, is to create an increased awareness and understanding that ME and CFS are very real, complex and debilitating neurological illnesses, and the consequences of living with ME or CFS, for the sufferer, carer and the whole family unit.
Website: www.brame.org
Email: brameinfo@yahoo.co.uk
#MEAction UK
Our movement fights for recognition, education, and research so that one day all people with ME (myalgic encephalomyelitis) will have access to rapid diagnosis, and compassionate, effective care. As people with ME, carers and allies ourselves, we campaign on the issues that are most pressing.
In Scotland, health is a devolved issue for the Scottish Parliament and covered by #MEAction Scotland.
WEBSITE: https://www.meaction.net/countries/UK/
EMAIL: UK@meaction.net
PAG
The PAG (Patient Advisory Group) supports patient-centred biomedical research into ME/CFS and ancillary processes by providing a direct patient voice—a voice that is as diverse and inclusive as possible. Our primary role is to deliver a patient perspective on the board of the CMRC (CFS/ME Research Collaborative).
EMAIL: cmrc.pag@gmail.com
Individuals
Carol Monaghan MP
Member of Parliament for Glasgow North West, Chair of the All Party Parliamentary Group on ME, have led three parliamentary debates on ME.
Email:carol.monaghan.mp@parliament.uk
Dr Nigel Speight
I provide advice and advocacy to families of young people with ME. Many of these families are threatened if left unprotected by a firm official diagnosis of ME from their local paediatrician. On occasions I actually provide consultations/second opinions on difficult cases, either at the request of their GP, paediatrician or advocate.
Email: speight@doctors.org.uk
Dr William Weir
Willy was an infectious disease consultant at the Royal Free Hospital where he had a large ME/CFS clinic. He is now in private practice working from Harley Street with both adults and children, bringing many years of scientific experience.
Email: wrcweir@hotmail.com
Dr Nina Muirhead
NHS Doctor, Person with ME, Chair of the Education Working Group for the CFS/ME Research Collaborative, Director of Doctors With ME.
Email: nina.muirhead@btinternet.com
Simon Chandlers MA CEng FIMechE MAPM
I am an independent member of the Forward ME having previously served as an NHS CCG Deputy Chair. After a viral illness, which developed into ME, I coordinated Deloitte’s UK Health account. I hope to use my skills and knowledge to help develop better services and thus outcomes for patients.
Email: simon.chandlers@btinternet.com
Baroness Scott of Needham-Market
Ros Scott has been a member of the House of Lords since May 2000, and has a particular interest in the Voluntary and Community sector, and the environment. She is keen to foster better understanding of ME, and is a member of the All Party Parliamentary Group for ME.
Email: ScottRC@parliament.uk
Professor Sir Stephen T Holgate CBE, FMedSci
Professor Sir Stephen Holgate – Chair of the UK CFS/ME Research Collaborative.
Stephen Holgate is Professor of Immunopharmacology and a respiratory physician at the University of Southampton. After qualifying in Medicine in London, he pursued research into the mechanisms of asthma and allergy. His work has resulted in excess of 1000 publications. He was a member of the Royal Commission on Environmental Pollution, Founding chair of the DH Committee on the Medical Effects of Air Pollutants, Chair of the Hazardous Substances Advisory Committee, President of the British Society of Allergy and Clinical Immunology, British Thoracic Society and British Association for Lung Research. He has chaired the MRC Population Systems Medicine Board and the Translation Research Group. He is currently a Member of the Natural Environment Research Council, Special Advisor to the RCP on Air Quality and the UKRI Clean Air Champion. He was a Founding Member of the Academy of Medical Sciences and has Served on its Council. He established the CFS/ME Research Collaborative that he chaired for 7 years. He has been a Trustee of CRUK and is a Trustee of the Great Ormond Street Hospital Children’s Charity, the Natasha Allergy Research Foundation and is Chair of the Kennedy Trust for Rheumatology Research. He was appointed CBE in 2011 for contributions to clinical science and Knighted in 2020 for contributions to Medical Research.
Email: sth@soton.ac.uk