The 6th Invest in ME

International ME/CFS Conference 2011


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Invest in ME Conference 2011 - from Invest in ME

Delegates from 20 countries were represented at the Invest in ME 2011 conference in Westminster, London on 20th May 2011.

The conference is organised in the ME Awareness Month of May and this year we tried as best we could, using our limited funds, to arrange as many opportunities as possible based around the conference – a focal point to promote ME awareness, change perceptions of ME and display the biomedical research into ME.

This year we also created a special awareness campaign to raise awareness of ME. Our Burst Our Bubble poster (click here) was distributed around the UK to support groups, healthcare organisations, libraries and GP surgeries.

Our Burst Our Bubble campaign is described here – click here. All of this was meant to set the scene for the conference events.



After being selected by London Business Matters (the magazine of the London Chamber of Commerce) as Charity of the Month for May, due to our campaigning for ME Awareness Month, we paid for a full page advert in the May edition of that magazine (click here). LBM is supposed to reach 18000 decision makers in London.


The conference this year was expanded to include several ancilliary events, all of which were meant to achieve the maximum possible effect to raise awareness and achieve progress for ME.  

The conference weekend began with a visit to parliament on Thursday morning followed up by a new IiME idea - the “Corridor Conference” - with clinicians and researchers discussing amongst themselves ways to collaborate, discuss issues and generally to progress knowledge and opportunities for research. The first day ended with the IiME Pre-Conference Evening Presentation with Dr Ian Gibson and Hillary Johnson presenting on Science, Politics and ME from both sides of the Atlantic. Friday the 20th May was the conference day with for the full day of presentations. In the evening we were pleased to host an informal meeting with researchers and representatives of the European ME Alliance  (EMEA) to allow more informal discussions to take place. On Saturday 21st we hosted and chaired the EMEA AGM – now eleven European countries working together.

Invest in ME published its Journal of IiME [click here] at the conference and abstracts of the conference presenters' presentations are included therein. 


Visit to Parliament

The visit to parliament to meet APPG members and other MPs was organised by Invest in ME to allow interested MPs to listen directly to biomedical researchers and clinicians tell about their latest research and experiences in treating ME patients.

We had discussed this with the acting chair of the APPG, Annette Brooke, for many weeks before the event and it is credit to Annette’s office that this could be organised.

The group organised by Invest in ME included Annette Whittemore and Dr Judy Mikovits from WPI, USA; Dr Andreas Kogelnik OMI, USA; Dr David Bell, USA and the conference chairman Professor Malcolm  Hooper.

We also invited Dr Ros Vallings from New Zealand and two of our European ME Alliance member representatives - from Germany and Denmark – as we thought it important to demonstrate that this is an international problem. We also had members of the Invest in ME Steering Group for the Norwich Research and Examination Facility (Invest in ME have been in contact with Norfolk MPs in order to canvass support for our proposal for an examination and research facility).

Present were the Countess of Mar, Ian Swales MP, Chloe Smith MP for Norfolk, Marcus Jones MP and a number of MPs’ assistants who attended on behalf of their MP as well as members of the public.

Annette Brooke MP chaired the meeting and after introductions Dr Mikovits, Mrs Whittemore, Dr Kogelnik and Dr Bell gave a short description of their current work and experience with ME.
Professor Hooper mentioned the PACE trial situation.

MPs were surprised to hear that ME is most probably caused by an infectious agent. It makes one wonder what information the APPG has been provided in the past or whether the information about ME has not been presented to the MPs clearly enough.

The MPs were also very concerned to hear that no one from the DoH or the MRC was considering attending or sending representatives to the IiME conference. The MPs all agreed that they ought to attend such a major event in the European ME calendar and Mr Swales expressed great surprise that Professor Stephen Holgate had yet again ignored the conference (IiME have invited him for the past few years).

The subject of MRC funding came up. Invest in ME do not believe this to be as significant as do some, especially as this is not the first time that the MRC have initiated an expert panel to look at ME. We pointed out that whilst the MRC expert panel had taken well over two years to hold a couple of tardily minuted meetings the WPI had set up a state of the art lab and energised ME research around the world.

Although this may not be a popular view in the APPG it needs to be said.

The Norfolk examination and research facility proposal was discussed also. This proposal would create a base for biomedical research into ME, using cohorts of patients who would be properly examined and diagnosed, using facilities within the NHS. We elicited support for this initiative from the Norfolk MPs.

Overall we demonstrated to the MPs there that there is a way forward with biomedical research.
We do not doubt Annette Brooke will help, as will Ian Swales.

The purpose was to put faces in front of the APPG people - to show them there is more happening than the talking shop approach that previous APPG meetings became.
The biomedical research and the possibilities from that are now firmly presented.
Whilst we do not expect any great changes from parliament or the APPG we feel it was important to try this initiative. Other ideas and other initiatives come from this.

Corridor Conference - The Researchers Meeting

 ‘The Corridor Meeting’ was attended by 20 researchers/clinicians from 7 different countries and there were some observers present too. Professor Geoffrey Burnstock gave a short presentation on purinergic signalling and the CNS to encourage new avenues to explore. Professor Tom Wileman from University of East Anglia chaired the meeting skilfully and after several hours of discussion there was an action point for collaboration and co-operation to apply for funding for collaborative research. We are happy to say that discussions between researchers have continued and are continuing. We hope this will lead to more cooperation and joint ventures.


Science, Politics and ME – The Pre-Conference Evening Presentation

Dr Ian Gibson is clearly used to speaking about science and politics. He spoke with ease and explained why politicians have been reluctant in getting involved in ME. The parliament is a big lobbying machinery and all politicians care for is votes. Too many mixed messages as is often the case in the ME matters make politicians steer away from a subject. Dr Gibson offered solutions to the problem and one of them is the establishment of a centre of excellence in Norwich where the PCT has been supportive and researchers at the University of East Anglia have offered to help. The one missing link is to get the University Hospital to offer the proposed consultant an honorary contract.  There is no reason why there could not be several centres of excellence around the country. After all there are many medical schools.

Hillary Johnson, the author of Osler’s web, concentrated on the historical aspects of the first retroviral connection to ME going over Elaine De Freitas’ work and contrasting it with todays  developments with the WPI. Similarities with these two discoveries were discussed and key players hindering progress of ME research were identified.

The presentations were fascinating.


IIMEC6 – The 6th Invest in ME International ME/CFS Conference 2011

The conference theme was the case for clinical trials and we invited our speakers to orient their presentations around that theme. Patients want to get better and if a treatment works in clinical trials then it is a breakthrough for any illness and the results of such trials can give pointers where to look for causality. There have been far too few properly conducted and controlled clinical trials for ME and this needs to change.  A comprehensive report of the conference has been prepared by Dr Rosamund Vallings and it can be read here - click here.

Plenary Session

This year we had invited the Secretary of State for Health, the CMO, the editors of the Lancet and the BMJ to attend the conference as our guests. Only the BMJ accepted the invitation by sending their assistant editor Dr Trish Groves to attend and take part in the plenary session.

The BMJ and Lancet have clearly been biased in their reporting when it comes to ME. The science presented at the conference showed that in a few years time these establishment journals will have a lot of explaining to do regarding their editorial policies. It has not been a level playing field regarding media space and funding of ME research but the times are changing and with the interest growing from researchers outside the usual ME field things start to move faster. The movement in the right direction can’t be stopped now.

Dr Groves was asked for her impressions of the conference. She said she was disappointed that the conference did not address the immediate problems patients face in their daily lives and was too scientific. She and many others in the psychosocial school of thought forget that many patients are also trained doctors, scientists, lawyers etc. and well informed and are able to understand the science presented and patients in general are well used to coping as that is all that has been on offer for the past 25 years or so. Dr Groves offered to come to give a presentation herself next year on how to plan clinical trials so that journals such as BMJ would publish them - seemingly ignoring the fact that she was sitting in the midst of an abundance of world-class researchers who know how to conduct trials, with decades of experience in ME research and who need funding and media space not condescension.


The European ME Alliance now consists of eleven countries and most were able to be presented in London. The newest additions are Holland and Italy. EMEA was recently officially registered and aims to raise funds to be able to lobby effectively in Europe and organise co-ordinated events to make sure all countries raise the right kind of awareness of ME and do it effectively. Already events were planned for this year after IIMEC6 in Germany, Sweden, Belgium and Norway.


We had a great mix of researchers and clinicians presenting and it was good to see the old experience blended in with new ideas. The more new blood gets drawn into the field the faster we get results. It was also good to see doctors interested in the field or just wanting to learn how to treat their patients better in the audience. There were past presenters such as Dr Peterson and Dr Monro in attendance which shows that our conference serves as a valued educational platform and a meeting place for exchanging ideas.

We know of three or four major developments which are underway - due to the conference and other meetings. They are unlikely to become public knowledge for a while - but would not have happened but for the conference events.

Invest  in ME have wondered often about the value from the conferences, whether we should continue arranging them, what should be the content, how we could get the most out of them.

We have always hoped that others could use the conference as a focal point to help raise awareness and publicise the need for action in their local areas, to introduce more politicians, healthcare staff and media people to ME and to encourage them to attend. And we have always hoped that the networking possibilities facilitated by the conferences could encourage more work, more distribution of knowledge. We feel this has been achieved. Several meetings elsewhere have taken place directly as a result of the London conference such as a meeting straight after the conference in Belfast which took advantage of IiME’s funding of Dr Mikovits’ visit to London and a meeting in Liverpool where Professor Hooper and Dr Spurr, one of our past conference speakers, presented.

We hope to arrange funding for future conferences during the rest of this year.


Our DVD was being edited and produced during June and July. I t is ready for distribution in August but, unfortunately, we cannot give a firm date as to when it will be released - click here for latest news.

The DVD can be ordered here.



We welcome comments back from delegates so that we can improve future events.

A gallery will be updated using pictures from our conference photographer Regina Clos. Regina has performed a marvellous job again this year by recording the IiME events. Despite suffering from ME Regina has made the atmosphere of the IiME events come alive in her photographs (click here).



Finally we would like to thank our supporters and friends who have donated to IiME and/or given their resource and support to us in many different ways.

We look forward to developments in treatments being progressed and hope that our continued lobbying will make the relevant authorities aware that only good science will prevail.

We firmly believe the dedication of researchers and patient groups will soon provide real progress for people with ME and their families.

Conference Report

A Conference Report has been prepared by Rosamund Vallings of the Associated New Zealand ME Society - click here.

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Last Updated: 06/08/2011