It was good to learn at the IiME conference in London that the WPI's Dr Mikovits and Dr Jonathan Kerr were working together and had been awarded a $1.6 million grant by the National Institute of Allergy And Infectious Diseases. This grant spans 5 years and will provide critical support for the ongoing research into the causes and diagnosis of neuro-immune diseases.

It is immensely encouraging to know that one of our key requirements, namely international collaboration on biomedical research into ME, is thriving - more reason to direct fundraising to such programmes as those of the WPI and Dr Kerr. IiME's Biomedical Research Fund is aimed at assisting in this area also.

Martin Lerner - Energy Index Point Score

Dr Martin Lerner is now treating a number of UK patients on antiviral medicines - apparently supported by their medical insurance.

Dr Lerner's Energy Index Point Score (EIPS TM) is now a fully registered U.S. trademark.  It is freely useable and may be referred to as "Reg. US Pat. Off." or " Reg. U.S. Pat and Tm Off."

See the EIPS here.

We mentioned in our September Newsletter Supplement that we were involved in some new projects.

International ME/CFS Conference 2010

Our fifth Invest in ME International ME/CFS Conference is scheduled for central London in May 2010. We hope to bring more details shortly.

Two other projects concern films relating to ME.

One of these films is a feature-length documentary about ME and the struggle to get the illness recognised by the medical profession. This film is aimed at showing the way ME has been treated, both in the UK and abroad.

For this the film producers would like to find people with ME who would be willing to be interviewed with a view to being included in this documentary.

Although all stories are welcome of special interest would be those who contracted the illness in the 1980s, those who have been misdiagnosed or were treated with CBT and/or GET and got worse because of it.

The film makers are especially looking for intriguing and interesting stories that convey the devastation of ME or where promising careers have been affected by this illness.

We are hoping to receive stories not just from the UK but from Europe also and we hope the contacts within our European ME Alliance (www.europeanmealliance.org) may help us.

All details received will be treated confidentially and only passed to the film researchers, who will then be in contact with those who have offered their participation.

Invest in ME will acknowledge all receipt of stories from those contacting us.

If you are interested in contributing please contact us at -

Invest in ME
PO Box 561
Eastleigh SO50 0GQ
Hampshire

or email us here at IiME. Include Name, Email address (if applicable), Postal Address and Contact telephone Number (if possible). Also required are Year contracted ME, Year ME diagnosed, who and how diagnosed and any further information about your story (initially a  maximum of about 300 words) - perhaps detailing your life/career before becoming ill and how the illness has affected your life.

Invest in ME will pass this information to the film producers having made them aware that this information is not to be shared with any other person or organization without your permission.

As mentioned last month we are nearing the end of our current batch of Lost Voices, having distributed the book to seventeen countries. Thanks to donations made by supporters Lost Voices now appears in medical and public libraries – the latest being West Middlesex University Hospital NHS Trust.

Invest in ME have self funded the cost and distribution of nearly 250 copies of Lost Voices to politicians, journalists, television and radio presenters, doctors, ME advocates, healthcare staff and to others whom we thought would help raise awareness of ME or be instrumental in changing perception regarding ME - the latest being a copy to be sent to the Director of Secondary Care, DHSSPS in Ireland.

Lost Voices has been included in study material for courses on 'The Chronic Illness Experience' at De Paul University, Chicago, USA, an important centre involved in ME/CFS research where Invest in ME have offered to supply the book for free for future courses.

Via one of our great supporters in the USA a copy of Lost Voices has even found its way to the White House. Sadly we also sent a copy to the Prime Minster's wife but received neither acknowledgement of receipt nor any indication that the book had been read.

Lost Voices has met with widespread appreciation from patients, carers, family, friends, doctors, consultants, researchers and MPs concerned about the plight of sufferers. There is clearly a need for such a book, so Invest in ME are looking for help with funds to order a second batch of Lost Voices. We intend to distribute the book as far and as wide as our resources allow and we have grant applications in to try to help in this endeavour. If we are unsuccessful in these grant applications then IiME's trustees themselves will attempt to fund directly another batch of the books.

In the meantime an update on the book project is a development - into a film -

'Lost Voices and the Emperor's new robes... but what has happened to his clothes?'

Lost Voices briefly touched on the differing views of ME ranging from those underpinned by decades of biomedical research to those derived from outdated assumptions and supported by research based on an unrepresentative and heterogeneous patient base. The film "Lost Voices and the Emperor's new robes... but what has happened to his clothes?" will continue to explore these powerful and neglected issues.

This is not a film about living with ME, but reveals how support for psychiatric and psychosocial perspectives and the spread of misinformation have severely affected and even destroyed the lives of many people with a severe neuroimmune disease.

'Lost voices and the Emperor's new robes... but what has happened to his clothes?' is the working title and is being made by the same team who undertook the original book project - an ME patient's family with a mix of relevant skills and committed personal involvement. The first stages of filming are already underway with contributions from doctors, consultants, researchers, sufferers and their families. Subsequent stages will develop this into a well-informed, evocative and powerful film where some of the contributors to 'Lost Voices' will be included, as well as some very welcome new participants. Invest in ME will bring more news on this project as it develops. The Lost Voices will continue to be heard.