Date: May 8, 2026
URL:
https://www.sussexexpress.co.uk/you...t-me-awareness-week-may-11th-may-17th-8514625
Ref:
http://www.measussex.org.uk
40 Years of commitment
----------------------
During ME Awareness week this year the charity that works for those
affected by Myalgic encephalomyelitis (ME) or Chronic fatigue syndrome
(CFS) across Sussex is marking its fortieth anniversary and reflecting
on what has been achieved over the years.
The organisation that was founded in 1986/7 when some people got
together and met with regional doctors and parliamentarians who
recognised that there was an urgent need for specialist health care and
support for the large number of people who had the illness locally. A
survey was carried out amongst patients and GPs that clearly called for
a specialist NHS service to help with diagnosis and run management
courses.
Another turning point was when the author and former round the world
yachts woman Clare Francis MBE and Sussex dignitaries along with health
workers joined around 450 members of the charity at Hove Town Hall that
played a part in changing some conceptions of the often life changing
condition, that can follow a viral infection (including COVID) or
trauma.
Sometime after the survey and Hove conference officers of the charity
had many meetings with Sussex health authorities that eventually led to
the setting up of a specialist ME/CFS service staffed by an experienced
physician along with occupational therapists, psychologist and physio
therapist. The service, that is considered to be a leader in the field,
has thrived over the years seeing over 8,000 patients helping many to
manage their health situation well and enabling some to move on lead
reasonably active lives. A specialist service was established a little
later for youngsters affected by ME/CFS after meetings with the Brighton
health authority of the day.
Volunteers from the organisation have served on a number of national
committees and working groups over the years including the British
Association for Clinicians in ME/CFS (BACME) along with patient
charities and groups set up by Government departments. They have also
attended receptions at the Houses of Parliament and continue to work
with scientists at the Brighton and Sussex Medical School who have been
doing valuable research into ME/CFS and Long Covid.
The organisation has received recognition by being awarded a 2025/6
Prestige Award for the South East and BBC South Community Champion
presented by Esther Rantzen whose daughter Emily has been affected by
ME/CFS for some time. They have recently been nominated for The Kings
Award for Voluntary Services – it is an accolade in itself to be
nominated. Officers have been invited to attend a reception in Lewes
hosted by the Town's mayor.
ME/CFS Society chairman, Colin Barton has said: 'It's encouraging to
know of the good number of patients who have been able to move on to
lead reasonably active lives while being very aware of the many who
continue to be virtually housebound and in need of care - so our work
continues.'
