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.
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.
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 -
This would highlight the urgency
of research required to avoid people's lives being shortened and
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
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
As events and activities are planned locally we shall advertise and
concentrate on those activities to help maximise the publicity and
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
needs to be simple. Therefore the objectives need to be kept to a
minimum so everyone can agree on them and work towards them.
here at our statement and consider signing up.
If You Are Interested
Please email us -
contact us here.
ME Stories - Reasons Why We Need To Work Together
Read a selection of stories for ME Awareness Month -