Invest in ME
August 2014 newsletter
Welcome to the Invest in ME August 2014 newsletter.
"Possibly the two most
important research projects for ME in the UK
IIMEC9 - Synergising Research into ME
The IIMEC9 conference and Biomedical ResearThe
IIMEC9 conference and Biomedical Research into ME Colloquium (BRMEC4)
were the most successful yet. Synergising Research into ME was the theme and
title of the conference.
conference and our full day research meeting on the day before the
conference we could bring together different aspects of researching this
disease in the hope that, by combining ideas and experiences of biomedical
research into ME and collaborating in future research, we will enhance
education and the effectiveness of research efforts.
interesting to see a number of different meetings being spawned from the
colloquium and the later pre-conference dinner.
One top international researcher wrote after the conference to us - "It was
a great meeting and thank you for keeping me included in it. I am inspired
even at the progress since last year, though I know we need to move
light-years faster to make this change the unfortunate reality for so many
conference report has been written by Dr Ros Vallings - click
a number of promising initiatives have occurred from these meetings.
The IIMEC9 conference DVD
is available. The 4 disc 400 minute DVD set contains all lectures and pre
conference speech by Dr Nigel Speight. The DVD is region 0 PAL version and
plays on computers and DVD players worldwide.
UK orders cost £14,
Europe £15.50, outside Europe £17.
400 minutes of education
and CPD points may be claimed by healthcare professionals viewing this DVD.
The DVD can be ordered
via this link - click
Prior to the conference
IiME organised the 4th Biomedical Research into ME Colloquium - a research
meeting which brought almost 50 biomedical researchers from nine different
countries to discuss, inform, cooperate and collaborate for the future
benefit of all people with ME and their families.
Most of the major
initiatives concerning ME research around the world were represented at the
Colloquium including those in the UK concerning IiME's UK Gut Microbiota and
UK Rituximab Trial studies and the LSHTM biobank project and autonomic
nervous system research at Newcastle University.
The meeting was another
huge success with a number of initiatives coming from the meeting.
The researchers continued
to network after the meeting with several smaller groups of collaboration
IiME have produced a
report for GPs and healthcare staff showing the extent of current biomedical
research into ME. The booklet includes a summary by the charity's adviser,
Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at UCL
and is available from IiME.
We are happy to send it
to any healthcare professional who may find it useful. Just let us know
their address and we will post a copy to them. ME Support groups can also
order copies to distribute to healthcare professionals in their area. All we
would ask is a contribution toward postage costs.
Event Can Change Everything
charity is pleased to announce that our initial target for the Invest in ME/UCL
rituximab clinical trial has been reached. With donations and pledges the
total has surpassed £350,000.
supporter recently donated £5000. Ambleside School in Nottingham organised a
sport challenge that raised an amazing £2400. There were many other events
organised by Let's Do It For ME and many individual donations from so many
people, many from outside UK.
recently, due to a generous donation of £3000, the initial target amount was
reached in full. B and J (who have requested to remain anonymous) have
donated the final £3000 toward the fund. This generous offer has taken up
three slots in the MATRIX (click here) and our MATRIX fundraising page has
been updated to reflect this latest wonderful gesture.
thank you to everyone who contributed by way of donations, publicising the
fundraising or giving moral support to many fabulous fundraisers. Thank you
funding campaign has been an amazing effort from so many people. The list of
contributors has extended around the world. This has also shown how positive
and mature the ME supporters are.
media worthy news and it should be more widely recognised as showing what is
being achieved by people with ME and their families and friends. The
innovative Let's Do It For ME campaign has inspired all of us and now there
is hope for new research that will surely influence future directions.
we have reached the initial target we will continue to raise funds for a
contingency for the trial in case the preliminary study produces results
which affect the way forward. As soon as we are in a position to announce
more about this planned trial we shall do so - but the following statement
demonstrates that we have come a long way in preparing for this.
conducted clinical trials are desperately needed for ME patients and the
best evidence for a treatment so far comes from Norway and to validate this
research one needs to run trials in other countries too.
confident that we can complement the Norwegian research by initiating the UK
continue to welcome all support for this trial and feel confident this is
the correct approach.
Donations to make this happen may be made via the links on the link to the
A pdf document of the UK rituximab study
status to download and give to healthcare professionals - http://bit.ly/1cN4GzB
The Funders page contains
those groups who have supported Invest in ME by donating.
The MATRIX (see
later article) also contains details of those supporting the
We thank all those who are supporting us in
making this important clinical trial a reality.
Rituximab Web Site
rituximab contingency fund we welcome any groups, companies, organisations
and individuals who wish to contribute to the funding of the IiME/UCL
rituximab project to take a slot in the MATRIX - a unique way devised by
IiME/LDIFME to raise awareness and funds for biomedical research into ME.
the matrix is shaping up herehttp://www.ukrituximabtrial.org/IIME%20UK%20Rituximab%20Trial%20Matrix%2001.htm
been a truly international collaboration with participation from Canada,
USA, Australia, New Zealand, Sweden, Norway, Switzerland, Belgium, Ireland,
Germany and UK.
The UK Gut
Microbiota project was also presented by Professor Simon Carding at the
IIMEC9 conference in London and the research at IFR/UEA is now progressing
after passing the ethical approval stages.
information of the project can be found
We are now
raising funds for the follow-on work to this in order that the research can
continue. A project is being formalised and we hope to have more news in the
charity is also keen to extend the educational needs for ME. Funds are also
sought for projects involving medical students doing a masters degree in ME
charity has updated an executive summary for MPs regarding our proposal for
a UK Centre of Excellence.
initially been circulated to Norfolk MPs as part of a renewed attempt at
progressing examinations, research and treatment in UK for people with ME.
this year's research meetings IiME have decided to formalise an advisory
committee of researchers to help with planning the strategy for future
this will allow more focus on research required to find the pathomechanism
of the disease. Our existing advisors Dr Ian Gibson and Professor Jonathan
Edwards will be part of that panel among others. The first meeting will take
place at the end of the summer.
was present at the IiME pre-conference dinner in London in May, or who has
purchased the IIMEC9 conference DVD and listened to Dr Nigel Speight's
presentation, would be left in no doubt about the harm being done to
patients around Europe from the psychosocial view of ME.
Nigel Speight spoke eloquently and emotionally about Very
Severe - Why Are Patients neglected and Abused?
the event wondering why Dr Speight is still needing to fire-fight against a
system that allows systemic abuse of very severely ill defenceless ME
patients? It is clear that patients have very little support from the
establishment so it is no wonder families choose to keep very low profiles
when a family member is very severely ill.
human rights and statements from NICE or from ministers seem to matter very
little when diagnosis can be changed by so-called "experts" from ME to
Pervasive Refusal Syndrome, Munchausen's by Proxy or something else.
responsible for this state of affairs?
little point in blaming doctors and nurses in general as they get trained
and regulated by someone.
is still problematic as patients vary a lot and without careful history
taking and the right kind of questioning many treatable conditions may be
missed. On the one hand doctors need to be very careful before giving
patients an ME diagnosis and on the other hand one has more success of
treating patients successfully if the condition is recognised early.
But there is little excuse nowadays for healthcare professionals to be
ignorant of current research into ME.
Department of Health can intervene when abuse in the NHS has been publicised
in other areas then that department also should be morally bound to do so
when ME patients are being neglected or mistreated.
training and education or knowledge about ME is lacking (as even the chair
of the RCGP admitted at our IIMEC8 conference in 2013), or even worse when
it is misleading then it is necessary for that to be rectified by those
entrusted with responsibility for maintaining healthcare standards.
Dr Martin McShane these questions ourselves (click
here) in our teleconference meeting with him last year. But, even
when confronted by parents of a severely ill young adult (who themselves
have been victims of the systemic bias and ignorance of ME), apart from
empathy it seems that the establishment just does not want to know - and
certainly does not want to act.
says he is tired of fire-fighting. Why does he have to fire-fight?
long stated that it was impossible to make progress if government bodies
continue to act in practice as if ME is a psychosomatic or medically
unexplained condition, despite assurances that they accept the WHO
classification of ME as a neurological illness classified in ICD10 G93.3. No
organisation acting in this way deserves to command support and should be
open for public scrutiny.
difficult to see how government departments, healthcare services or
research-funding bodies can be influenced in the correct way if two entirely
different views are being presented all under the term ME.
precisely because of such a misinformation that doctors are allowed to
continue to remain ignorant of ME; that the DoH are allowed to play games
around patient organisations; that ministers and ATOS officials can attend
meetings about ME but leave and do nothing afterwards; and that national
funding agencies can reject valid research proposals based on ideology and
biased reviews rather than on scientific merit.
Dr Speight have to fire-fight? One does not have to look far for basic
answers to this question.
Speight's presentation is on the IIMEC9 conference DVD - click
we move things on with high-quality biomedical research.
be stated is that without continued education and awareness campaigns by
patients, advocates and organisations who have campaigned for many years for
a change in strategy, and without the efforts of the biomedical researchers
who have been presenting at IiME international conferences then very little
progress would be made.
those organisations using public funds for research have clearly been forced
into a wake-up call by patients making determined efforts to facilitate
biomedical research into ME.
now held 9 international conferences and 4 research colloquiums - biomedical
research meetings which will have nothing to do with the psychosocial view
of ME but are heavily structured around sharing and cooperation and
international collaboration. Yet though it is important for us who we work
with - it is ultimately those whom we work for that matters. IiME is working
for the benefit and future of ME patients and their families.
team have launched the Let's
Get Snapping for ME Xmas
Card Competition. The competition is going to be run through a Competition
that rather than emailing in photos entrants will just be able
to go our Competition Page Entry Form and upload directly. We will still
have the option to accept email entries - but this will really only be for
those who have problems using the form or who are not on Facebook.
will purely be done via the public vote through our Gallery Page which will
open on 1st Sept. Then Invest in ME will judge the final stage.
for the Competition is http://woobox.com/b83vfy .
In London in May IiME chaired the European ME Alliance
AGM and were extremely pleased to
expand EMEA NORDIC with member groups from Iceland and Finland.
This makes the number of countries represented
in EMEA to thirteen countries.
More details click
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