Invest in ME Conference News

ME Awareness Month

Burst Our Bubble


Let's Break New Ground -

Not Tread Old Water

Invest in ME have continued with preparation for ME Awareness Month 2011 events, based around the 6th Invest in ME International ME/CFS Conference on 20th May. Treading water is not the way to continue so we have tried to break new ground as best we can with our limited resources.

Here are brief details of already planned events as well as some newly publicised events.

Meeting Between IiME Researchers and UK MPs in Parliament

We have been planning for many weeks a meeting between some of the researchers at the Invest in ME International ME/CFS Conference and MPs. Following assistance from one of our supporters,  a constituent of Annette Brooke MP (who is currently chair of the All Party Parliamentary Group for ME (APPG) ), we have been working with Annette's office to organise a special meeting on 19th May in parliament with the MPs who are part of the APPG, and other MPs who are interested in ME.

A party of Invest in ME researchers will attend this meeting and we hope will allow a better understanding of the biomedical research possibilities and the obstacles which prevent proper science from being performed (click here).

We are not expecting miracles from this meeting. We are hoping to educate the new APPG MPs about our views as our inputs in the past to such forums have been ignored (click here). It is not our intention to tread water.  There is an opportunity for MPs to hear directly from credible researchers and from us - so we made it happen. Education regarding ME is the key to making progress.

Corridor Conference - A Researchers' Meeting

This year, instead of repeating our roundtable discussion with researchers which appeared on our 2010 DVD (click here) we have tried to do something different, and hopefully more productive for progress for ME research. We know that some of the most interesting and useful discussions come not from presentations at conferences but instead from side meetings in the corridors during breaks. We have organised a meeting between researchers in order to foster better cooperation and collaboration. We have assembled 20 researchers and scientists from seven different countries, from USA, Sweden, Germany, Norway, Belgium, Australia and UK and provided a provisional agenda which we hope will produce better understanding and future collaborative ventures. This meeting follows on from the recent ME Symposium in Brisbane, Australia.

This event will not be filmed, even though we would have liked to do so. We wish to provide the best environment possible for researchers to discuss openly and freely and this will not happen if they need to be on guard.

Researchers meet infrequently. With a disease such as ME it is incumbent on researchers to put aside personal ambition and status and work together. We, the patients and carers, need this to happen and we'll do whatever we can to support collaborative projects which achieve rapid progress for the benefit of all.

We hope to have news of the meeting after the conference.

Pre-Conference Evening - Science, Politics and ME

Hillary Johnson and Dr Ian Gibson have unique views of the politics which have affected science, and in particular ME. Our attempt to focus on this subject forms the basis of this transatlantic view of science and politics in action.

More details click here.

We shall be filming this event for inclusion of the conference DVD.

The 6th Invest in ME International ME/CFS Conference 2011

The conference is sold out and has almost twenty countries represented (see here).

A new addition to the conference line-up is Professor Geoffrey Burnstock who will present on Purinergic Signalling in CNS Disorders. We agree that Professor Burnstock may well provide an important line of thinking - he is a renowned scientist already having created three paradigm shifts and we hope this will be another breaking of new ground for ME research.  

Post-Conference Meeting with Researchers and EMEA

Invest in ME have organised a post-conference wash-up with the conference presenters and EMEA members with a meeting after the conference to discuss fall-out from the conference and future collaboration.

The European ME Alliance AGM and Planning Meeting

EMEA is meeting after the conference and we are about to welcome new members from Holland and Italy - thus making the number of European countries represented eleven. EMEA will be planning new campaigns and research activities. EMEA member Norway has broken new ground in the ME world with their long time leader, Ellen Piro,  having been awarded the King of Norway's silver medal for her services for the ME cause. Ellen has been a steadfast campaigner for the correct perception of ME.

Other Awareness Month Items

We have previously mentioned our full page advert in London Business Matters - the magazine of the London Chamber of Commerce (see here).

We have also offered the IIMEC6 conference DVD for an early bird price during the month of May (click here).

Lost Voices is on offer during May when sponsored for a healthcare professional (click here).

The Journal of IiME is published in May and serves as part of each delegate's conference pack. It will be published here.

We have tried to get as much as possible from the opportunity which the IiME conference brings to ME Awareness Month. Treading water is a strategy which serves no one but those who wish to have no progress. Let's break new ground where we can.

Burst Our Bubble

Download our Awareness Poster (in black or white versions) and distribute for ME Awareness Month
(click on the image below)
Invest in ME will also be sending out these as leaflets during ME Awareness Month. We are happy to provide leaflets to groups and to support awareness campaigns (if we have the financial resources to do so)

Invest in ME

Registered UK Charity Nr. 1114035

PO BOX 561, Eastleigh SO50 0GQ, UK

The Way Forward for ME - A Case for Clinical Trials

6th International ME/CFS Conference

20th May 2011 Westminster, London


ME Awareness wristbands are available to support biomedical research into ME.

Support ME Awareness - Invest in ME