Invest in ME Statement

 

What We Do

Invest in ME (IiME) has, as an objective, to make a change in how ME is perceived and treated in the media, by health departments and by healthcare professionals.
We aim to do this by concentrating our efforts on three main areas - funding for biomedical research into ME, education of healthcare professionals, the media and the public and lobbying for improvement in the treatment of people with ME and their families.
We have no membership fees and try to offer as much as possible for free, or at cost price.

Our efforts are focused on setting up a UK examination and research facility (click here) which will provide proper examinations and diagnosis for ME patients and a coordinated strategy of biomedical research into ME in order to find treatment(s) and cure(s).

Together with an ever growing number of resourceful and dedicated supporters we are all working toward the goal of making a positive contribution to progress.

The Invest in ME biomedical research fund, aimed at funding biomedical research into ME based in Norwich, Norfolk, has now (as at February 2013) reached over 80,000.

We applaud the vision, dedication, positive attitudes and sheer hard work being performed by this wonderful band of supporters and the Let's Do It for ME campaign.
Extraordinary efforts from outstanding people who are not content to just stand still but wish instead to make progress.

We believe this campaign will make a difference.

Support ME Awareness - Invest in ME - Let's Do It for ME

We thought it might be appropriate to repeat our reply to a recent email and to mention some of the things we have been involved in the six years since we have been formed.

Invest in ME was formed by families who had lost faith in the belief that existing organisations had any real wish to change anything. Since the organisation was formed in 2005, and since the charity was formed in 2006, we have dedicated every day to attempt to promote biomedical research into ME and force a change in the way that this disease is perceived and treated by healthcare professionals, the media and the public.

We have held campaigns to raise money for biomedical research. We have decided early on that education of healthcare staff, the media, government departments, patient groups and patients is a priority.

This is why we focus so much effort and the few resources we have on our annual conference, DVDs and books.

We have contacted DoH, Government ministers, MPs, CMO and MRC in order to campaign for people with ME and improved funding for biomedical research, better education of healthcare staff and more awareness of the seriousness of ME.

We proposed that the Chief Medical Officer of England make ME a notifiable illness, in light of the recent retroviral research. This followed our earlier campaign to focus attention on young people with ME by demanding that the CMO make ME a notifiable illness in schools.  

We contacted the CMO regarding the blood ban actually we think we were communicating with the CMO on this before any other national charity. We had suggested the blood ban quite a while ago and have criticized the CMOs for the lack of proactivity in this area.

We facilitated and secured invitations to the CMO, Secretary of State for Health and the Chief Executive of the Medical Research Council to visit the WPI to see their facilities and plans, as well as attend the official opening in 2010. (they were either declined or ignored).

We organise an annual biomedical research conference which allows the latest research to be presented from around the world. We are planning our seventh conference at this time and we try to attract the best ME research to London so that it will be easier for healthcare staff, politicians and the media (as well as people with ME and their families) to listen to the latest research and be able to discuss and network with others.

For all the work we try to do as much as possible is performed for free and we only charge basic unit cost price to people with ME. So, for example, the conference ticket prices for people with ME and their carers are the very basic cost of the food which is provided on the day and do not cover the speakers' expenses, hotels, venue, conference packs, insurance or anything else associated with the conference.

We have offered heavily subsidised rates for pwme and their carers so that they could attend and instigated a sponsored healthcare delegate rate which allows healthcare staff to attend the conferences at a reduce rate if they made contact to a local group. We did this to encourage healthcare professionals but also to foster better relationships between local ME groups and healthcare professionals.

From each conference we have tried to produce a DVD of the entire conference proceedings which we offer at cost price to allow as many people to listen to and see the extent of biomedical research which is being undertaken.

Our DVDs lose money as we try to make them available to as many people as possible. But we believe education about ME is extremely important and will take on the challenge of distributing this information as far and wide as we can.

Our emphasis is on better education regarding ME and to build a strategy for biomedical research into ME in Europe.

We have tried to engage the government, MRC and CMO in the conferences - offering free places or inviting them to open the conference. This was to allow them to be accountable to patients and carers as well as to avail themselves of the latest research into ME.

We helped initiate a UK study by the WPI after we discussed with their medical director how we could counter the negative studies about the XMRV research. Together with the WPI, we came up with a joint idea to initiate the UK XMRV research studies.

We have paid for a UK researcher to attend the Australian Symposium on ME which was organised by Bond University and the Alison Hunter Memorial Foundation.

In recent times the charity has initiated the foundation project for our centre of excellence proposal by agreeing to fund a project with IFR/UEA to study the gut microbiota of ME patients.

We have also initiated a project which will lead to a UK rituximab clinical trial for ME. Our initial preliminary study is being performed by UCL.

IiME is the UK distributor for the Canadian Guidelines Consensus Document - a document which we distribute on a not-for-profit basis.

We always try to help patients who have contacted us, some of whom have been turned away or let down by other charities. We have been dealing recently with some serious cases where patients have been neglected and badly treated.

We have actively contacted ministers, MPs, GPs, healthcare organisations, PALS and individual doctors in order to help some patients who have nowhere else to go.

We know this is a drop in the ocean compared to the need but we do our best. In the future we hope would be in a position to do more.

 

We are one of the founder members of the European ME Alliance (EMEA) which is an alliance of European patient groups and which is officially registered and accountable and which works together to raise awareness and initiate and facilitate biomedical research into ME. We believe this has huge potential for change.

IiME are currently chairing the EMEA board. 

We have been willing to work with other organisations and have been assisting, and been assisted by local organisations around the country.

We also were initially involved in the Forward-ME group set up by Countess Mar and always contributed input to meetings. We were critical of policies of some of those organisations in that group - so much so that one meeting of Forward-ME discussed our continued membership of that group -  after which we were no longer invited to attend. We are still be happy to contribute our input if required but we will not compromise on the treatment of people with ME.

We have been invited to participate in the All Party parliamentary Group on ME (APPG) and have contributed to that group with input to each meeting. In 2011 we set up a special meeting of the APPG group in the  Westminster parliament and organised a group of researchers from our 2011 biomedical research conference to attend and inform the APPG group of the need for biomedical research.

In May 2012 Invest in ME, along with the Alison Hunter memorial Foundation of Australia, organised and hosted the Clinical Autoimmunity Working Group meeting in London, a meeting of autoimmunity and ME experts from around the world. The meeting was convened by University of East Anglia and Bond University.

In May 2014 the charity will form its fourth Biomedical Research into ME Colloquium in London bringing together international researchers and clinicians from eight countries - with the purpose to form collaborations, share knowledge and experience and formulate future strategies for biomedical research into ME.

When possible we also organise pre-conference meetings on specific topics. Last year we had Hillary Johnson and Dr Ian Gibson talking about Science, Politics and ME.

Our ethos is not to charge pwme for what we provide, if we can avoid it. This is why we have no membership fees.

Where we necessarily have to charge, for example for the conference or for DVDs, we heavily subsidise these for pwme and their carers or try to offer them at cost price.

The Lost Voices book is an example of this where it was offered it at less than the cost price in order for it to available to as many people as possible.

We have also donated or distributed, for free, about a third of the Lost Voices book which were ordered and they have gone to politicians, media outlets, journalists, ministers, doctors, healthcare organisations and also to healthcare libraries (thanks to some wonderful fund-raising by some of our supporters).

We have supporters already in many parts of the UK and around the world.

 

We are happy to continue to campaign for the rights of people with ME and to continue our demands for a strategy of biomedical research into ME.

We will not stop but we will remain independent - we will not accept government money to endorse their policies if they fail people with ME and their families.

Neither will we refrain from commenting if we feel people with ME are at risk. A recent example was the concerted media campaign to denigrate people with ME and their families in the UK national press which promoted biased opinions and the flawed views of some psychiatrists and vested interests. Invest in ME submitted a comprehensive complaint to the Press Complaints Commission.

 

We have close links to many world-renowned researchers and organisations, from whom we seek advice and information.

We feel we have an abundance of advice, guidance, experience and information available from many sources from around the world which we can call on when necessary.

We also have links to local groups around the UK.

 

We have made a proposal for an examination and research facility based around the Norwich Research Park and involving the University of East Anglia, the university hospital and the local PCT as well as institutes in the research park, such as the Genome Sequencing institute. This is to initiate the basis of a UK centre of excellence. We have commitment from the PCT to fund examinations and from the university to perform biomedical research.

[See http://www.investinme.org/Research%20-%20ME%20Institute.htm]

We have been joined by a visionary band of supporters in the Let's Do It for ME campaign - which is helping to raise funds for the research and examination facility.

We have a small but loyal group of supporters who help fund us and the trustees make up the difference for the conference costs, DVD productions and books and other services we provide.

Although our funds are small compared with some other charities we hope we make up for this with passion and commitment.

 

To encourage more biomedical research and international collaboration the chrity has been working with the Alison Hunter Memorial Foundation of Australia and organise the first Clinical Autoimmunity Working Group meeting in London in 2012 - a meeting of the world's top experts in their fields. This was to encourage research and new ideas.

 

We are continuing to apply for grants to fund projects, research and to help in raising awareness of ME.

These are some the things we are doing or have done.

As a charity we hope we are accurately portraying the wishes of ME sufferers and their families.

Our current funding means that we have to be careful and concentrate on those areas where we feel something needs to be done, or said.

 

We have doubts about some of the main organisations purporting to represent people with ME. For the main part we try to concentrate on what we can do - our biomedical research fund is nicknamed the Can Do research fund.

We have said before that we believe people must look at the differences between the charities, how they are organised and what they achieve with the means they have and then support those who are prepared to defend their interests and campaign for their rights.

We have two types of donations:

    General donations which help go toward running of the charity or for research. This includes the web site, organising the annual conferences, creating and distributing Lost Voices, DVDs, booklets, postal and printing costs regarding sending out information, the Journal of IiME and advocacy work for ME patients. Any campaigns we initiate are also a candidate

    Our Biomedical Research Fund this was set up specifically to try to maximize research funding and separate it from other funds so that it could be used for activities associated with biomedical research. This was aimed at activities which initiated or supported biomedical research and education. Recently the fund has been aimed exclusively at funding biomedical research in our proposal for an examination and research facility in Norwich. More recently we have ring-fenced donations for projects such as the rituximab clinical trial.

We do not pay wages. All our services and work is voluntary.

In the last few years the trustees of Invest in ME have donated significantly from their own personal means to enable the conferences to go ahead and to perform research. By far the largest contributors to our funds have been the trustees themselves.

If we have no funds then we will fund ourselves, where possible.

Our accounts and audit review are published for all to see on our web site and on the Charities Commission site.

We don't claim to be special in any way - only that we are dedicated to achieving progress and to rid ourselves of the current situation where no serious attempt is being made to investigate, explain, treat or cure this disease.

We would certainly welcome more support as it would enable us to do more.

In the end we firmly believe that good science will win through.

We are not going away until ME is treated properly.

  

Thank you to everyone who has and are supporting us and our objectives.

 

Let's Energise ME Research and Awareness

Let's Do It for ME

Click on the bubble above for our original ME Awareness Month campaign page

Invest in ME

Registered UK Charity Nr. 1114035

PO BOX 561, Eastleigh SO50 0GQ, UK

www.investinme.org

Building a Future for Research into ME Clinical and Research

 

Support ME Awareness - Invest in ME