Message

IiME have sent this message to a representative selection of people and groups who are involved in trying to change the way ME is perceived in the UK and elsewhere in the world. 

This selection is not exhaustive and it is only meant to be a starting set of people to put an idea forward which we hope you would consider. It is a starting set of people in the UK and Ireland. To this we would add another 20 or so people around the world to initiate a similar joining of forces in their countries.

We set up Invest in ME because we were frustrated by the lack of progress in getting proper publicly funded biological research into ME which, in turn, condemns people with ME to more years of suffering. Progress in getting this illness treated properly is painfully slow - far too slow.

We know we aren't alone and that many people have been working for years to achieve this.

We have an idea to try to be more effective in what we are all trying to do.

• We know recent research has highlighted long term damage to ME patients and problems with cardio-, shortened life-span etc.

• People with ME are losing their lives with progress being retarded by the people who have most to lose from acceptance of ME as an organic illness.

• We can't afford to act alone (cost, contacts, fragmentation of effort etc.). We can all make a difference but we have limited funds, disparate groups and still not enough publicity.

Our Proposal

In the year when we have an inquiry in the UK being started by an MP, what if we initiate a new campaign culminating (initially) in ME Awareness Month this May?

The campaign is called -

Race Against TiME

• This would highlight the urgency of research required to avoid people's lives being shortened and wasted.
• We would join forces under one campaign banner under which  all of the groups and individuals in the country will unite.
• We would then coordinate all of this into a publicity campaign and get some sponsor/funding
• The focal point will be ME Awareness Month - May 2006.
• The highlight of that week would be the 12th May - ME Awareness Day.
• We have an international ME conference in London already organised for 12th May which can galvanise publicity.
• During the month we will organise across-the-country Have a Cuppa for ME days which would not only raise money for biomedical research but would also generate publicity for the Race Against TiME campaign.
• We will publicise other events leading up to this.
• We will harness all of the publicity into one month long campaign and possibly get one or more major companies to sponsor it.
• We will actually continue the campaign for the whole year, or beyond.
• The title ensures that the urgency of this is recognised
• We need everyone around the country, and the world to unite behind this. So this will be an international campaign.

This campaign would not displace any groups or interfere with other work done across the country. But we believe we might be able to tie in the conference, the ME Awareness week, the availability of speakers in London and potential sponsors to coordinate all of this under one campaign.

We will all play a part. The planning of events and actions continues around the world and we keep the publicity going by 'passing the baton' in this Race Against TiME. As events and activities are planned locally we shall advertise and concentrate on those activities to help maximise the publicity and support.

In the UK we want to get MPs behind this campaign and UK parliamentary EDM 260 will be used.

We can make this work. Join us.

Our Common Statement for the Race Against TiME