Aims[edit | edit source]
The ME Trust is the UK’s only charity dedicated to funding and providing individual patient treatment for people with ME/CFS. As well as listening and caring for the needs of the whole person, the Trust offers encouragement and support to families, carers and friends.
The Vision is to bring hope and transformation care to all affected by ME/CFS. "
The Mission is to provide multi-disciplinary care and support based on a person's individual needs.
Services[edit | edit source]
The ME Trust has a unique model of care based on individually tailored services. The multi-disciplinary team includes a specialist Doctor, nurse, physiotherapist, counsellors and chaplains.
The Trust's 2018-2021 vision has an aspiration to provide Inpatient care.
The ME Trust received an 'outstanding' grading from the CQC in 2020.
Notable people[edit | edit source]
Patrons[edit | edit source]
Bishop James Newcome
Dr Mike Cheshire
The Countess of Mar
Trustees[edit | edit source]
Rollo Hope (Chairman)
Research/Notable studies[edit | edit source]
History[edit | edit source]
The ME Trust was founded in 2011 by Hannah Clifton, following her own recovery from ME, with the aim of bringing life transforming treatment, care and support to people with ME/CFS.
Initially the Trust focussed on raising money to support in-patient care at Burrswood Hospital, where a specialist service had been developed. The team at Burrswood, led by Dr Paul Worthley, pioneered a whole person approach to the treatment of ME. People were treated as individuals, with equal regard given to their medical, physical, emotional and spiritual needs.
In 2015, when Burrswood changed its priorities and was no longer able to accept patients with ME/CFS, the Trust was forced to consider how best to help people with ME/CFS, especially the most severely affected cases. A new model of care was developed based on home visits and telephone consultations. At first Doctor Worthley worked alone, but understanding the value of whole person care, he quickly gathered a team around him to replicate the team approach at Burrswood. Today the team consists of a Doctor, a Nurse, a Physiotherapist, four Counsellors and three Chaplains.
In 2018 the Trust opened a Clinic in Crowborough, East Sussex, offering face to face consultations to patients well enough to travel to see the Doctor and/or Physio. Follow up appointments are arranged, and usually conducted by telephone and/or skype. The Clinic has also enabled the training of the first ME Specialist Nurse who can continue to support patients after an initial consultation through home visits and phone calls.
With the opening of the Clinic, the ME Trust registered as a Healthcare Provider with the Care Quality Commission. At first inspection in 2019, the Trust was given an Outstanding rating.
Funding[edit | edit source]
Interviews and articles[edit | edit source]
Online presence[edit | edit source]
See also[edit | edit source]
Learn more[edit | edit source]
References[edit | edit source]
myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.