Invest in ME (Research)

Small Charity, BIG Cause

IiME Initiated

UK Microbiome project
and
UK rituximab clinical trial for ME and B-cell Research

Foundations for a UK Centre of Excellence for ME

Thank you for visiting our page describing the BIG Cause efforts to create a UK/International hub for biomedical research into Myalgic Encephalomyelitis (ME - also referred to as ME/CFS).

ME is recognised by the World Health Organisation (WHO) and by the UK government as a chronic neurological illness.

Below are links to information about the charity, its proposal and the people supporting us.

Please help us - Let's Do It For ME.

BACKGROUND

People with ME need early and correct diagnosis, proper treatment and advice. The current status of services for people with ME and their families in the UK is poor with little knowledge of biomedical research being applied and possible treatments not being made available to patients or healthcare staff.

Simplistic and ineffectual psychological therapies are offered in place of real treatments - wasting public money and doing nothing to help patients.

This has resulted in ME patients having no real healthcare service and far too little progress in attracting new researchers or clinicians to study the disease.

The dangers for people with ME in having no proper clinical examination and no access to possible treatments is that the disease can develop into more severe forms with significant loss of functioning.

There is also the danger of mis- or missed diagnosis – a common problem with people thought to suffer from ME.

The USA Food & Drugs Agency (FDA) recently decided to re-categorise ME in "Immune Diseases - describing it as "SERIOUS and LIFE THREATENING", on a par with cancer or /heart failure (click here) and the UK government recognise ME as a chronic neurological illness.

Read more - click here.

To download our poster please click here (for LBM pdf) or click here for the A4 pdf version).

THE CHARITY PROPOSAL - THE BIG CAUSE

With the objective of improving and promoting education about ME amongst healthcare staff and raising awareness of the disease the charity feels that the best way to make progress is to establish a national centre of excellence for ME.

To this end we have established momentum and resources to begin work on establishing a base of research which could develop into a facility leading to a UK Centre of Excellence for Biomedical Research into ME.

With the help of leading researchers the charity is proposing a number of initial projects which would help establish a research base and lead to further projects being initiated based on findings.

It is not often realised that 60-70% of the immune system is located in the gut as a vast network of lymph tissue referred to as GALT (gut associated lymphatic tissue). The research highlighted in the proposal involves looking at gut microbiota, which is the latest thinking in how to go about research. In USA, renowned pathogen hunter Dr. Ian Lipkin and specialist clinician Dr. Nancy Klimas  have all been suggesting a similar approach.

A foundation project at the University of East Anglia began in 2013 - funded by Invest in ME. More details are available at this link.

The charity is keen to replicate the recent Norwegian findings (click here) using Rituximab. We have now initiated a UK rituximab project with UCL. A specific web site has been set up to document this project - see www.ukrituximabtrial.org.

There are also a number of new ideas being developed. The aim is to build on this but the research has to start somewhere and so the researchers will begin afresh with the best approach. This research proposal would build a strategy of research which would involve patients, clinicians and researchers working together.

Read more - click here.

The above proposal would lead to a facility with the following benefits –

• Early and correct diagnosis of ME

• the clinical  lead consultant would assess and plan the development of future services in conjunction with commissioning PCTs

• it would provide access to specialist assessment, diagnosis and advice on the clinical management, including symptom control and specific interventions, for both patients and health professionals

• eventual provision of an ambulatory service and/or tele-medical services for those severely ill patients who cannot be moved

• development of a network of local multi-agency domiciliary services to support people who are more severely affected and who are unable to access hospital and primary care services

• allow ME/CFS patients (including those severely affected) to participate in clinical trials, where novel research will be conducted, and where medical students can learn about this disease

• facilitate training and education opportunities for healthcare staff to enhance their knowledge and skills in the diagnosis and management of ME

• lead the development of services within primary and secondary care and support GPs and other health professionals in the care of patients with ME.

• Healthcare staff would feel more comfortable with the diagnosis of ME being made

• Undertake comprehensive assessments and provide a care package for each patient to include carer and family support

• Savings on existing consultant referrals and staff by concentrating ME examination in one area.

The benefits of this approach will, we are sure, save lives and could help restore or improve the lives of hundreds of thousands of patients and their families.

Read more - click here

Foundation Project Begins - click here

UK rituximab trial initated - click here

The Let's Do It For ME campaign aims to help IiME raise funds for biomedical research into ME within our proposal.

More details, including a goal thermometer, are available here.

The Let's Do It For ME Story - click here

The charity is made up of volunteers - people with ME or parents of children with ME. We have no paid employees and all the work we and our supporters do is entirely without payment.

Every year the charity has organised and hosted an international biomedical research conference in London and this and the associated full conference DVD now attracts researchers, healthcare professionals, clinicians, patient groups and patients from over twenty countries.

The charity is a founder member of the European ME Alliance and has collaborated with international organisations.

Each year the charity organises a research meeting prior to the international conference and this is now attracting researchers from nine countries, representing the latest strategies in biomedical research into ME - click here.

In May 2012 the charity and the Alison Hunter Memorial Foundation of Australia organised and hosted the first Clinical Autoimmunity Working Group for ME in London - click here.

In May 2013 the Biomedical Research into ME Colloquium 3 meeting was held in London with 40 researchers from 9 countries attending, prior to the IIMEC8 Invest in ME International ME Conference 2013 - click here. After this Invest in ME initiated the project leading to a UK clinical trial of rituximab for ME with associated B-cell research being performed at UCL London.-

In May 2014 the Biomedical Research into ME Colloquium 4 meeting was held in London with 50 researchers from 11 countries attending, prior to the IIMEC8 Invest in ME International ME Conference 2014 - click here.

In May 2015 the Biomedical Research into ME Colloquium 5 meeting was held in London with 60 researchers from 13 countries attending, prior to the IIMEC8 Invest in ME International ME Conference 2015 - click here.

Our aim is to build sustainable and developing collaborations with translational biomedical research at the heart of all research.

About us - Invest in ME - click here.

More info - click here

OTHER WORK PERFORMED BY THE CHARITY

The charity campaigns for a strategy of biomedical research into ME.

We also raise issues with the government, Department of Health, MPs, the media and others on behalf of people with ME -

Invest in ME - Communications with the UK Chief Medical Officer

RESPONSE to SECRETARY of STATE for HEALTH from INVEST in ME

APPG Meetings 2012 Invest in ME Campaigning

We try to make available all of the products we produce for educational purposes as cheaply as possible - click here.

We continue to campaign and will do whatever we can to improve the education and correct perception surrounding ME - click here.

A sample of stories and experiences of ME patients and their carers is available on our web site - click here.

The book distributed by the charity also clearly describes the effect of ME on patients and families - Lost Voices  -click here

Lost Voices is primarily written by people affected by severe ME- whether as sufferers, carers or families - those very severely affected – house-bound or bed-bound - are represented.

Also severely affected ME stories in the media - click here.

We welcome your support.

Our JustGiving page is here.

Our unique rituximab trial donation scheme - The MATRIX - is available here.

Invest in ME have been facilitating research collaboration between individuals and organisations and have funded UK research.

The charity's success in arranging ten annual international biomedical research conferences and five international biomedical research colloquiums demonstrates its determination and coomitment to find a cause or causes for this devastating disease.

IiME has European connections and links to other researchers and institutes in Europe and Australia and USA.

The foundations are therefore  already in place to advance science and provide the promise of better treatment and possible restoration of function and lives back to a section of the community who have received very little help in the past.

Please help us to find the cause of this disease and develop effective treatments to permit patients to regain their lives.

Contact Invest in ME using our email address here

FURTHER READING

University of East Anglia	http://www.foh.uea.ac.uk
Institute of Food Research	http://www.ifr.ac.uk
Norwich Research Park	http://www.nrp.org.uk/cms.php?pageid=1
Norfolk and Norwich University Hospital	http://www.nnuh.nhs.uk
TGAC - The Genome Analysis Centre	http://www.tgac.bbsrc.ac.uk
EDP News Story	http://www.investinme.org/Medianewspapers.htm
MP Executive Summary August 2014
FAQ September 2011

Our Autumn 2012 Advert for Biomedical Research into ME - click here