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
This year we also created a special
to raise awareness of ME. Our
Burst Our Bubble poster (click
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
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
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.
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.
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
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
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 -
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
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
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
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
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 -
here for latest news.
The DVD can be
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
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.
A Conference Report has been prepared by Rosamund Vallings of the
Associated New Zealand ME Society -