ME Awareness Month
The Invest in ME Research volunteers are very busy for the MAY ME Awareness Month.
There are many supporters helping the charity in raising awareness and vital funds for biomedical research.
The team is also devoting long hours, as it has been doing for months, to getting the ME Conference Week organised and implementing several ideas to facilitate collaboration between researchers whom we feel will benefit people with ME.
The charity has arranged seven events (including dinners) over 5 days - a considerable undertaking - and yet we are in our thirteenth year of doing this.
May Awareness Month was initiated by IiMER in 2006 as previously people had only spoken of an ME Awareness Week or an ME Awareness Day.
Organising and funding these events in London, including colloquium/conferences and other meetings, is not an easy task and it takes many months of work.
In 2006 when Invest in ME was set up as a charity there were no ME conferences in the UK and the only other international one was the IACFSME event every two years.
People were sceptical as it was not the done thing to mix patients and professionals in the same event but
IiMER proved the concept works best with patient involvement.
This year we have had an increasing number of researchers and other healthcare professionals wishing to be involved and have invited twenty students to attend whom we have sponsored or part-sponsored.
Our forthcoming Conference and Colloquium is bringing together an established family (network) of researchers that we have built up over the years.
And we add more expertise and new faces to the mix, including several from outside the field of ME research, in order to make the event more productive.
We have a distinct influence from USA this year in our presentations with NIH and CDC presenting and the major centres of research participating.
We also include many Europeans and have a number of presenters at our Colloquium from Norway, Sweden, Finland and Denmark - and our first researcher from Iceland. A real Scandinavian/Nordic flavour to the proceedings.
We have also several researchers from the UK including those funded by IiMER and we are pleased that the UK Biobank is participating - and with an increasing number of news items and research being generated by this national resource (http://www.ukbiobank.ac.uk/genetics-in-the-news/).
But it is not just getting researchers to the Colloquium that matters - it is also what they can bring to the event to help others, and how they might share data and collaborate with each other - the same thinking behind the European ME Research Group (EMERG) concept where top researchers work together and build good working relationships with each other based on skills and trust.
We have also introduced a new event this year Thinking the Future Young/Early Career Researcher meeting and dinner that precedes the Colloquium.
It is five years since the charity set up its first funded researcher.
An organisation can achieve a lot in five years - or an organisation can achieve nothing.
Often the difference is down to individuals - although it can be due to different agendas being played out by individuals representing an organisation.
It is about genuine intent to make progress rather than disingenuous reinvention after years of leading patients down the garden path.
For IiMER there is a simple agenda - to establish a foundation of high-quality biomedical research into ME, with international collaboration, which is sustainable - something we have been facilitating for far longer than five years.
And it is down to the passion and dedication of people that we have managed to influence things - thanks to the supporters of the charity who continually demonstrate their commitment to finding ways to support the charity.
The charity and the Let’s Do It For ME team and our supporters have shown what a few passionate volunteers can achieve against all the odds.
Some may think that the charity only does a conference every year and nothing else.
Oh were it so simple!
The Colloquium/Conference preparations do take many months of planning - starting in the summer of the year before. But the charity functions every day of the year.
Apart from the myriad of things to get ready for the Colloquium and Conference
the charity has been assisting in other areas.
What has been happening just this last week - and over a bank holiday weekend in UK?
We have been dealing with a request to support our Finnish colleagues in
addressing concerns with the current recommendations about to be made form a working group that has been
looking at services for ME in Finland - click here.
We are currently in the process of making a response together with the European ME Alliance (EMEA).
We have seen the press release from the Swedish Ministry of Health
(click here) which has a promise by
the Minister to
address the issues of people with ME and which will report by the end of the year.
We need to influence that debate and assist our EMEA collegaues as best we can.
So we have invited the Swedish Minister of Health to the conference to help their working group to form sound recommendations that help rather than hinder
people with ME.
We are preparing for the NICE meeting at the end of the month.
Our recommendations to NICE [click here] fell on deaf ears so it is
important that we keep up the pressure.
The charity has been reviewing research proposals that have been discussed over the past months.
Our Have a Cuppa for ME pages are up and we have been sending out cards to help raise awareness - see here.
We have been contacted by several who are Walking for ME - a yearly event to raise awareness and funds for research. So we are sending out t-shirts, wristbands, booklets and leaflets.
We are very grateful to the IiMER-funded students and to Quadram institute Bioscience (QIB) who will be holding an ME awareness day for the charity in May.
QIB have a busy year as they move into the new centre in the summer [click here].
QIB will also be taking a table at the #IIMEC13 conference in London on 1st June.
We are making preparations for the European ME Alliance AGM which occurs in London after the conference and looking at WHO ICD-11 within EMEA - and looking at the excellent work that has been done by Suzy Chapman and Mary Dimmock.
There are some other initiatives we have been working on also which we hope will become apparent before long.
A lot of the work involves emails and skype meetings which go on throughout the year.
In the last week we have been dealing with enquiries to help some families who have major problems with
the state of their children's health.
It is a perennial problem that no services or expert consultants are available - due largely to the miniscule attention
given to biomedical research into ME by funding agencies and those who have represented them over the last decade.
Every week we are confronted with the consequences of the appalling disregard for people's lives .
We have been contacted by a family where a patient member has been considering assisted suicide due to the severity of ME.
And sadly, and not for the first time, we have been trying to help in a situation where another family wishes to donate
post-mortem tissue from a severely ill patient to medical research and have been contacting some researchers
to ask for advice and assistance.
The tragic reality of this situation is difficult to accept or comprehend - and impossible to describe what families are enduring.
All of this goes on behind the scenes - over a bank holiday weekend in UK in ME Awareness Month.
Perhaps not a typical week for the charity - but filled with events that certainly are not uncommon.
There may be more publicity and awareness for ME during the month of May.
Yet there is not a week during the year that goes by which is not full of reasons that reinforce the urgency of resolving the way that ME is perceived, treated and researched. Every week that passes just increases our determination to progress our strategy of biomedical research into ME which will enable treatments and services to be developed - and real and rapid progress to be made.
