IIMEC9 Conference Events
A reminder of our IIMEC9 International ME Conference in London on 30th
May. This CPD-accredited conference is our ninth annual biomedical
research conference and this year is perhaps the strongest - with a
great deal of research which is gradually coming together to make the
future for ME patients and their families more promising.
The conferences have always had researchers and patients mixing and
networking and working together. It is as a result of our conferences
that many new initiatives have occurred - not least of which has been
the initiation of possibly the two most important research project for
ME in the UK - the gut microbiome project (mentioned above) and the UK
rituximab clinical trial [click
These projects were funded by patients, carers and friends in order to
initiate proper and strategic research into this disease.
This year's conference is full of research from all continents and from
top-class researchers -
the agenda is here.
A new addition to the conference is Dr Andy Kogelnik who returns to
discuss the OMI research and contributes to the panel discussion on
diagnosis and treatments for ME.
Dr Kogelnik will also be participating in the Biomedical Research into
ME Colloquium 4 - our fourth research meeting bringing together
scientists and clinicians from eight countries.
The IiME Colloquiums occur on the day before the conference and we are
fortunate to have an impressive mix of experienced ME researchers and
some from other fields.
The charity's advisors, Dr Ian Gibson and Professor Jonathan Edwards,
will be co-chairing the BRMEC4 Colloquium and the range or researchers
and organisations attending is a force for change regarding ME.
Our title of the IIMEC8 conference was Mainstreaming ME Research -
something that is now evident in the follow on meetings.
In order to cover the severely affected and to
highlight the reasons why we feel our conferences and research meetings
are required we have invited Dr Nigel Speight to present the keynote
speech at our pre-conference dinner on the evening before the
The terrible cases of abuse of ME patients continues - almost all of
them based on the ignorance about ME which the government and those
organisations responsible for researching ME have allowed to be
fabricated over a generation.
Dr Speight continues to be involved in cases where lives are being
directly affected by the ignorance about ME which has been allowed to be
built for a generation.
Ignorance about ME is not, of course, confined to the UK. Karina
Hansen's case in Denmark continues to cause alarm as does the apparent
silence of the Danish Health minister and those who entrusted with
Karina's care in the Hammel Neurocentre in Jylland.
Again IiME have written to the minister and to the Hammel Neurocentre
physicians to offer help by inviting them to our conference events in
London where we will facilitate meetings to help Karina [click
we have received no response.
When one offers help then common courtesy dictates that it is declined
or accepted. As we have seen from the cases of how badly things have
gone wrong in some of the non-ME cases in the UK NHS health staff (and
ministers) are accountable - and will be held to account.
Professor Stephen Holgate of the MRC was quoted last year as saying we
are bathing in a sea of ignorance regarding ME. We agree - although we
would say we have been drowning rather than bathing. It is rather
disingenuous, though, of those who have been involved in controlling
funding for ME research and have been aware of the lack of results from
the psychosocial approach to ME to talk of ignorance.
It is organisations such as the MRC and the NIH in the
USA who have been helping to fill the bath for all these years.
How else can one explain the lack of funding for biomedical research
especially into causes of ME? Experienced researchers such as Professors
Ron Davis and Ian Lipkin are willing to study the disease but cannot get
NIH funding. Surely the often-used excuse of lack of good quality
research applications does not apply here. It is obvious that there has
been, and still is something profoundly wrong with the peer reviewing
system regarding biomedical ME research applications within these
organisations - something IiME has mentioned frequently over the years.
It is vital that these organisations address this as a matter of urgency
- perhaps even via parliamentary scrutiny.
The policies of these organisations seem to affect other countries also
- and so we have situations like that of Karina, where blind ignorance
of the effects of ME and a lack of proper research cause patients' lives
to be endangered.
It is too late
to learn to swim when the water is up to your lips says the old Danish
In the Danish parliament recently the scale of systemic ignorance
was glaringly illustrated by the comments in the Parliamentary
Health Committee public hearing on functional disorders.
Functional Syndromes - a euphemism for much of what has been wrong
with the involvement of psychiatry in ME - was shown to be an
inadequate term covering many poorly researched diseases - and
Danish doctors were singled out as not having enough knowledge of
the diseases that are difficult to diagnose [click
the parliament site coverage and click
Programme on Severe ME
The coverage of ME by UK media is normally inaccurate and simplistic. A
video from the German TV programme "Menschen - das Magazin" shows the
reality of a family living with ME. It tells the story of Katharina and
her two severely ill daughters, Pauline and Adele, who are both
suffering from ME [click
Thank you to everyone who voted and helped Invest in ME in the recent
Big Break competition.
IiME won the top £2000 prize thanks to a lot of hard work and effort
from dedicated supporters
The prize will be spent on one or more of the biomedical research
projects we have - rituximab clinical trial, gut microbiota
developments. We are looking to initiate other projects and are in
discussion with our advisors.
This was again a great team effort.
Thank you again for all the great img/IIMER images, videos, music and all the
other imaginative ways you used to get people voting for us.
There is not doubt we have the best supporters in the world.
The wonderful, positive spirit of the
supporters we have shines through. Patients, carers and friends are
making a difference.
The wonderful, positive spirit of the supporters we have shines through.
Patients, carers and friends are making a difference.
Whilst we begin fundraising for further microbiome-related research our
fundraising for a UK rituximab trial continues and has now passed the
£291,000 mark and continues to progress well.
Our donate page carries the totals [click
We are also pleased to announce a donation from the
Irish ME/CFS Association
This amazingly generous gesture was announced by world-renowned advocate
Tom Kindlon, who is the vice-chair of the Irish ME/CFS Association. The
funds will be used for biomedical research projects which are underway
or being planned.
Tom was one of the first to contact IiME when we formed as an
organisation and his encouragement in the early days helped enormously
as we began to find our feet.
All at IiME, as well as our supporters would like to thank the members
and board of the Irish ME/CFS Association for this donation.
Conference overview by Anthony Komaroff, MD
A summary of the proceedings from the 11th International IACFS/ME
Conference 'Translating Science Into Clinical Practice' San Francisco ,
20-23 March 2014, can be viewed here
The World Blue for ME
An imaginative scheme for raising awareness and funds for ME research
has been Juliann Chown - Turn Yor Body Blue for ME -
click here. Juliann's fundraising page is at https://www.justgiving.com/Julieann-Chown
A similar scheme which ties in well for this is the May 12th awareness
campaign which aims to help shed light on ME by shedding light on
prominent buildings for the day. IiME have joined this by agreeing to
write to the administration contacts for major buildings in the UK
asking them to join the world wide awareness campaign -
Turning the world blue for an evening may turn a few heads to increase