In the summer of 2011 ME
patients and their families were exposed to a torrent of inflammatory and
biased media mis-information in a seemingly coordinated campaign relating to
the illness, to patients and to research into ME. Misinformation and
ignorance about ME is not a new response from a simplistic and manipulated
The distress and concern
caused to Invest in ME supporters and their carers forced the charity to
submit a formal complaint to the Press Complaints Committee about these
series of articles  – all seemingly emanating from the same source. The
charity’s actions were not due simply to the fact that extremist views of
the disease and the alleged actions of patients were being falsely portrayed
by the media and by paid buffoons masquerading as journalists – it was due
to the effect it had on patients who yet again were seeing their situation,
and the disease from which they are suffering daily, being ridiculed and
misrepresented by poor journalism and missing editorial rigour.
How does a patient community
respond to such prejudice and propaganda? How can a change be made in the
way that the media view this disease and the sick and vulnerable people that
suffer from it?
At around this time an idea
was born by Jo Best and helped on by Jan Laverick and Paul Kayes – all ME
patients. Instead of continually
reacting to what others were doing or saying they decided to take a
proactive approach. A campaign was started to support the Norwich
examination and research facility proposal which Invest in ME had made to
initiate a UK Centre of Excellence for ME.
The difference with this
campaign? To use the skills and ideas of patients who want more than
anything else to regain their health. By harnessing these ideas and enabling
people to feel positive about doing something themselves to effect change
then the campaign could be turned into something which was fun. Positive
campaigning – with an objective to fund sorely needed translational
biomedical research into ME and to harness patient power to influence ME
research – something which has been missing from the equation.
There are an estimated 250
000 ME patients in the UK, twice as many as MS patients and MS charities
manage to raise millions of pounds for research. ME patients and their
families should be able to do the same.
The Let's Do It For ME
campaign is a positive and proactive campaign. The aim is to raise funds for
biomedical research but everyone's input is welcomed - be it just ideas or
moral support for other people's fundraising.
Whilst raising funds for
biomedical research the campaign is also raising much needed awareness and
allowing correct information about ME to be disseminated.
Carole Carrick and her
husband Clive have been doing several supermarket collections and by doing
so they have met many members of the public and passed on information about
ME by talking to people. Carole also attended an ME event at the Scottish
Parliament in Edinburgh as an IiME representative and again raised much
needed awareness of IiME's activities and the LDIFME campaign. Kathryn Lloyd
was so severely affected for many years that she could not even
speak so she raised several thousand pounds by
doing a sponsored silence. James Wythe pledged to raise £3000 if others
raised a matching sum. It was achieved. The fundraising efforts have grown
and now we have several people taking part in various events.
are marathon runners – in Brighton, Paris and Edinburgh. Little 10 year old
Teigan ran a mini-marathon to raise funds for IiME. Teigan’s mother suffers
from ME . There are people taking part in events such as 'The Big Sleep',
school non uniform and awareness raising days, art exhibitions etc. Jan
Laverick and Carmel Hillary have set up online shops to sell t-shirts and
other gifts with IiME and LDIFME logos.
order to facilitate fund-raising campaigns a subscription to Just Giving has
been set up thanks to a kind donation to cover the first year's subscription
fees to Just Giving.
In a short article such as
this we cannot mention everyone who has taken part, or contributed with
money or ideas [indeed, since this article was written there have been
many more people, groups, ideas, suggestions, actions and help being formed
or created]. But the campaign has been effective and re-energised
research, making the go-ahead for the IiME proposal nearer to reality.
Rather than waiting for
others to do things – a strategy which has not faired well over a generation
– the people involved in the efforts to make the IiME proposal a reality are
taking it on themselves to make a difference.
it for ME! is a patient-driven campaign to raise awareness and vital funds
for a centre
of excellence for
translational biomedical ME research, clinical assessment, diagnosis and
treatment for patients, and training and information for healthcare staff
based at the University of East Anglia in the UK and aiming to work
collaboratively with international biomedical researchers.
(The pictures in the mosaic
on this page are some of the volunteers and supporters from the Let’s Do It
for ME campaigns).