This article was first published for the Journal of IiME Volume 6 Issue 1

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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 press.

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 [1] – 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. There 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.

In 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.

Let's do 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. 

Reference:

[1] http://www.investinme.org/Article-505%20PCC%20Complaint%20Aug%202011.htm

(The pictures in the mosaic on this page are some of the volunteers and supporters from the Let’s Do It for ME campaigns).

 

 

Let's Do It for ME Campaign

The Let's Do It For ME campaign aims to help IiME raise funds for biomedical research into ME within our proposal. More details, including a goal thermometer, are available here.


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