Initiating ME Research IIMEC1


IIMEC1 London, May 2006

Our first Invest in ME International ME Conference - held in 2006 - IIMEC1 - took place on 12th May 2006 in London, less than a month after Invest in ME was registered as a UK charity, and only five months after planning began for the conference.

The theme for IIMEC1 was Initiating ME Research.

We welcomed international researchers and clinicians discussing current and research into ME.

The conference was given the maximum 6 points CPD (Continuous Professional Development) accreditation by the Royal Colleges. The conference provided a chance to hear the latest news on ME from the most prominent speakers within the ME community - on ME Awareness Day, in ME Awareness Month 2006. Invest in ME hoped that this conference would highlight the need for publicly funded biomedical research which would lead to treatment and a cure for this devastating illness - an illness which is about 5 times more common in the UK than HIV/AIDS.

Why a Conference? Invest in ME is about education, publicising and lobbying regarding the treatment of ME sufferers in the UK and regarding the need for public funding of biomedical research into ME. In recent years there are many who feel that ME Awareness Week (as it had become) had passed with too little public attention gained, little co-ordination of events and limited success in rallying people behind our cause, all of which had produced little or no long term benefit for the ME sufferers. Therefore, we considered how we could complement all the on-going good efforts and attract a much larger interest from professionals in the medical, healthcare, academic and media worlds that could also raise the profile politically.

Since IiME had forged links with academia and some politicians, we thought that a public event to expose current activities to a wider audience would be of benefit to all.

We believe it is important to provide a possibility for people within government, health departments, social services and schools to be able to be informed of the true nature of ME. By attracting some of the most powerful speakers possible, at one conference, we believed we could gain much publicity and awareness of ME as possible.

Why London?

We chose London to attract major presenters, to allow the possibility for known professionals and researchers to attend and focus attention on raising awareness in the heart of power in the UK - Westminster.

SOur hope was to attempt to attract clinicians, researchers, healthcare staff, charities, support groups and patients and carers to participate in research discussions and allow unique networking opportunities and increase the potential for one of the charity's main objectives - international collaboration between researchers.

IIMEC1 in Journal of Clinical Pathology

The presentations from the International ME Conference in London during May 2006 have now been adapted and published in the Journal of Clinical Pathology.


IIMEC1 Conference Agenda 2006

Lecture Theatre Birdcage Walk

Conference Report

by Doris Jones

IIMEC1 Conference Report

SYNOPSIS OF THE INVEST IN ME CONFERENCE, LONDON, 12.5.2006 - AN UPDATE ON CLINICAL DIAGNOSIS, RESEARCH TRENDS AND EDUCATIONAL SUPPORT

This was an excellent and well attended conference, organized and managed by parents of children with ME. Invest in ME was only formed six months ago.

People from around the world were attending this conference.

Dr Ian Gibson, MP for Norwich North, reported on progress made with the Informal Inquiry into ME. It was necessary to raise the profile of ME – there was much bias. Patient group representatives, Drs. Byron Hyde and Bruce Carruthers had given evidence, and delegates from NICE were asked probing questions. Next they would hear evidence from experts. He hoped that as a result of this inquiry matters could be taken forward.

Dr Bruce Carruthers (Canada) spoke about the Canadian Consensus Clinical Case Definition. FM was included in the discussion of CFS. The use of this document in Canada for a few years had made a lot of difference to ME and FM patients. The English clinician Thomas Sydenham was a mentor in devising these new guidelines – he had pioneered with clinical descriptions of cases and diseases, which was the approach taken in compiling the new guidelines. The patient was the focus of attention. He explained how these guidelines work in practice and contrasted this ‘entity focus’ diagnosis briefly with the new ‘non-entity’ diagnosis, which was based on the bio-psycho-social model of illness. - Copies of the condensed version of the new guidelines were provided.

Professor Malcolm Hooper outlined key findings in biomedical research. He mentioned three DVDs: His own ‘Engaging with ME’, Dr Vance Spence’s ‘Energizing Biomedical Research in ME/CFS’ and Dr John Gow’s DVD. GWS, OPs, MCS, ME/CFS and FMS were multi-system and multi-organ diseases, involving the neurological -, autonomic -, central + peripheral nervous -, cardiovascular -, immune – and gastro-intestinal systems. These and others are overlapping syndromes. He listed findings from a recent NIH debate on CFS and mentioned the Countess of Mar’s ‘battle’ with Lord Warner over the classification of ME as a neurological disease (under G93.3) by the WHO. The bio-psycho-social model was based on fraud and ignorance, an Australian paper stated. This and several other articles discussed these issues. He made a plea for the adoption and application of the 2003 Canadian Consensus Panel Criteria for ME. There was a need for subtypes. Finally he listed a number of crucial books on ME as well as important recent articles. – By any standards, this was a most remarkable lecture.

Jane Colby spoke about the Young ME Sufferers Trust (TYMES) and her own experiences with severe ME. TYMES is a registered charity, run by (unpaid) volunteers. They are now co-funding with MERGE the first biomedical study on children with ME. She described the scale of the problem, the illness pattern in schools, clustering of cases, frequent misdiagnosis and an inevitable conflict between health vs education. ME was a polio-like illness, as shown in her book ‘The New Plague’, triggered by over 70 enteroviruses. An estimated 25,000 schoolchildren are affected by ME in the UK. She had co-authored a study with Dr EG Dowsett, which showed that 51% of long-term sickness absence in schools was due to ME. She had also helped with the 1999 BBC Panorama programme, showing how children with ME are being treated: 59% of families were told by GPs that the child’s illness was psychological. Now teachers are being taught about ME in schools.

Dr Byron Hyde (Canada) has taken an interest in ME for over 20 years. His charity, the Nightingale Research Foundation, was named after Florence Nightingale, who fell ill with an ME-like illness after the Crimean War. She was bedridden most of the time after return. – He stressed that ME was not the same as CFS. Brain dysfunction was the defining symptom in ME, not fatigue. He had outlined his views and experiences in a red-cover booklet, which was available. He was most critical of the strong psychiatric involvement in ME – none of their theories or hypotheses can be tested, he said. He described the initial inappropriate psychiatric treatment meted out to some of his patients with resultant further problems. Thyroid scans and tests had shown that the thyroid shrinks, in some cases by 2/3rds over a 5-year period. He stressed links between vaccines and ME onset (especially recombinant Hepatitis B) and outlined the situations and locations, which favour the onset of ME: hospitals, schools, exhausted students or travelling musicians.

Dr Jonathan Kerr spoke about Functional Genomic Studies in CFS. Using the CDC criteria, his team looked at gene differentiation in 25 ME/CFS patients and 25 normal people. He gave an overview of basic cell processes. Six key areas of body function are affected, he stated, two affecting the immune system, and others affecting the neurological functioning and the mitochondria. A complex pathogenesis became apparent, which offered support for biological processes in CFS (as opposed to psychological ones).

Professor Bassant Puri, known as the ‘fish oil expert’, gave a presentation on lipid neuroscience. He said that Proton Neurospectroscopy, a powerful scanning technique, had identified a differential variation in choline levels in the brains of ME patients, meaning there aren’t sufficient chains of fatty acids. Prostaglandines, cytokines etc all come from EFAs. Using VegEPA capsules in conjunction with a nutrient-rich diet had shown good results.

The Q+A session raised important issues. Criona Wilson told the harrowing story of her daughter’s death due to medical neglect and mismanagement. – Invest in ME (www.investinme.org) will produce a DVD of this conference (estimated price £13). A more detailed report of this conference will be on the 25% ME Group website soon. – With thanks to the 25% ME Group for paying the fee for my attending this conference.

Doris Jones. 7.6.06.


Conference DVD

IIMEC1 Conference DVD

2 reviews
5.00 out of 5
Location Cost
UK £12
EUROPE £13
OUTSIDE EUROPE

£14


The DVD contains 4 discs and is in PAL format- containing The full set of presentations from the Invest in ME ME/CFS Conference of 2006, plus extra programmes from ITV Meridian and Norway's NRK channel on severe ME.

  • Use the drop-down box below
  • Verify the location to which the DVD will be sent
  • Select the correct price/type from the drop down box
  • Click on the Buy Now button
  • You will then be taken to the Paypal screen for payment
  • (NOTE: you do NOT need to have a Paypal account in order to pay with your credit/debit card)
  • Choose from Drop-down Box below

Select DVD Type from the drop-down box below

Order by Post

Send a cheque for the requisite amount (see above) to -
Invest in ME Research PO BOX 561 Eastleigh SO50 0GQ Hampshire UK

Please supply your name and address (and email address if possible)
Cheques should be made payable to Invest in ME Research

DVD Details

Format: PAL
Length 400 minutes
Contents Full presentations from conference


The views expressed at the Invest in ME International ME Conference conferences by the presenters and delegates to the conference and any information material distributed are their own personal opinions that are not necessarily shared or endorsed by the Trustees of Invest in ME/Invest in ME Research.

Invest in ME/Invest in ME Research accept no responsibility for the views expressed or any subsequent action taken. The contents of any presentation should not be deemed to be an endorsement, recommendation or approval of such content by Invest in ME/Invest in ME Research. The materials presented at the 1st Invest in ME International ME Conference 2006 do not constitute medical advice. No medical recommendations are given or implied by Invest in ME/Invest in ME Research. Any person registering or attending an Invest in ME/Invest in ME Research conference, or purchasing the DVD, who may take any action or consider medical treatment or referrals should take detailed advice from their own medical practitioner. Invest in ME/Invest in ME Research disclaims any implied guarantee about the accuracy, completeness, timeliness or relevance of any information contained at the conference.

By purchasing any of the conference DVDs you agree that Invest in ME/Invest in ME Research is not liable for any complications, injuries, loss or other medical problems arising from, or in connection with, the use of or reliance upon any information contained in the conference.


IIMEC1 GALLERY


Images from IIMEC1, London, 2006

Comments about Invest in ME Research Conferences


PAST INVEST in ME INTERNATIONAL ME CONFERENCES

More details of previous Invest in ME conferences can be found on the current IIMEC* conference overview page - Click here.


Our Sponsors for IIMEC1

Invest in ME wish to thank the following organisations for helping to sponsor the 1st Invest in ME International ME Conference 2006.


The Irish ME Trust

The Irish ME Trust have sponsored a speaker at all of our conferences and we would like to thank them for their continued support.



Success! Your message has been sent to us.
Error! There was an error sending your message.

Contact Us

Get in Touch

If you have any questions regarding the conference then please contact us by email and we will get back to you as soon as possible.
Thank you for your interest in the charity.


The Office

  • Address: Invest in ME Research
    PO Box 561 Eastleigh SO50 0GQ Hampshire, UK
  • Phone: 02380 643736 / 07759 349743
  • Email:
  • Conference:
  • Centre of Excellence for ME:

Follow Us or Support Us

Invest in ME Research Activity - Mainstreaming Research into ME


The charity does not only arrange and host research Colloquiums and Conferences.

Use our website references in the links below to view other work performed by Invest in ME Research.




Research

IIMER are facilitating a strategy of biomedical research into ME. The charity is currently funding possibly important research projects for ME in the UK with international collaboration.
Currently the main hub of research is at Quadram Institute Bioscience and University of East Anglia ) in the Norwich Research Park and we also fund research at UCL. These involve a gut microbiota project in Norwich and B cell research in London.

Advisory Board

The IIMER Advisory Board is made up of eminent researchers who are helping the charity to form a credible and productive biomedical research strategy which will provide the best and quickest route for possible treatments and cures for this disease.

Centre of Excellence for ME

Translational biomedical research - an iterative feedback of information between the basic and clinical research domains in order to accelerate knowledge translation from lab to bedside and back to lab again - allows translation of findings in basic research more quickly and efficiently into medical practice to produce more meaningful health outcomes and facilitate the sharing of repositories and research-based facilities and laboratories. This is the model IiMER are attempting to promote in the proposal for an examination and research facility based in Norwich.


Let's Do It For ME

Let's do it for ME! is a patient-driven campaign to raise awareness and vital funds for a UK centre of excellence for translational biomedical ME research, clinical assessment, diagnosis and treatment for patients, training and information for healthcare staff, based around the Norwich Research Park in the UK and aiming to work collaboratively with international biomedical researchers.

Research Colloquiums

In addition to the International ME Conference the charity also organises an annual International Research Colloquium which attracts researchers from around the world in order to discuss experiences and open up collaborations in order to find answers for this disease.

European Collaboration

Invest in ME Research is one of the founder members of the European ME Alliance (EMEA) – a grouping of charities and patient organisations working together across Europe. Now fifteen European countries collaborating.


Invest in ME Research

We welcome support to enable us to build and sustain a strategy of high-quality biomedical research into ME.

To support our work in developing a Centre for ME research please see this link.




Last Update 12/06/2016

  

Latest Tweets

Contact Us

  • Invest in ME Research Charity Nr. 1153730

  • Address: PO Box 561 Eastleigh Hampshire SO50 0GQ

  • Phone: 02380 643736 / 07759 349743

  • Email: info @ investinme.org

Follow Us



Latest Tweets

Contact Us

  • Invest in ME Research Charity Nr. 1153730

  • Address: PO Box 561 Eastleigh Hampshire SO50 0GQ

  • Phone: 02380 643736 / 07759 349743

  • Email: info @ investinme.org

Follow Us