Welcome to the Invest in ME Newsletter
for May 2006.
May is ME Awareness Month. Due to the preparations for the ME
Conference 2006 in London on 12th May there hasn't been so much time
available for news and events so this will be a shortened
newsletter.
This newsletter concentrates on
the Conference and looks at the speakers who are presenting as well
as mentioning something about the delegates attending.
Jonathan Kerr has given a brief
update on his research work as a taster of what is to come at the
conference.
We also cover a few of the other
areas and recent news. One important landmark in April has seen the
beginning of one
of the main objectives for IiME - the acceptance of
the Canadian guidelines as a way of providing more rigorous
diagnostic criteria for ME.
The news that two main ME Centres have decided to
adopt the Canadian criteria
(see
here) comes at an opportune time and can only subsequently lead
to more wide scale acceptance. While waiting for universally agreed
'thumb-print test' that can confirm the presence of M.E. this news
is welcome.
ME Awareness Month is more than just the IiME Conference and IiME
would like to support all activities being raised during the month
of May to raise awareness of M.E. No one
event need take the place of others or is necessarily more
significant. May ought to be filled with events around the country,
and around the world, to raise awareness of M.E. So, if you are
planning anything during May then good luck - and let us know about
it. If anyone would like to advertise their event just let us have
the details and we will include them and links on our web site.
Contact IiME
here.
The ME Conference 2006 was borne out of
the need to attract attention to the plight of people with ME and their
families. It was felt that an event with some of the most prominent
international experts on ME in attendance would focus attention and
allow a real message to be sent out to the media and the public.
Invest in ME have been working on this
conference literally every single day since from late November 2005
right up to the present day. Over 200 letters have been posted, over
2000 emails have been sent out, with a similar amount coming in. Our aim
has been to attract healthcare staff and those tasked with interfacing
with people with ME and their families.
IiME has
been pleased to receive some donations and one small sponsorship grant
to support the cost of the Conference. Without such contributions, the
economic viability of the Conference could have been questioned. The
Concession tickets have all been taken-up and we have operated a
“Waiting List” for cancellations since mid April, as the price reflects
the minimum economic cost to attend the conference. IiME are extremely
grateful to all the professionals who have taken time to support the
Conference and made it possible, without which the Trustees would be
looking to cover much more of the costs at risk.
IiME is not the only organisation trying to address
the lack of bio-medical research into M.E. and raise the awareness of
the illness in the UK. We will be addressing further issues after the
conference and plan to follow developments of the Parliamentary Enquiry
and the activities of the APPG in the future. Di Newman has provided
copies of the petition planned to be submitted to the European
Parliament at the end of the year for signing at the Conference and
these will be available at the conference for those delegates who wish
to sign their names.
We have over six countries represented at
the conference - from as far away as USA and Canada and as near as Eire.
Delegates from various groups and charities
include BRAME, 25% Group, MEA, AYME, ME North East, Peterborough ME
and CFS Self-Help, EAME, Cambridge ME Support, Camberwell ME, Suffolk
Youth and Parent Support, Plymouth and
District ME, ReMEmber, Irish ME
Trust, Norwegian ME Association, Danish ME/CFS Association. Apart from our distinguished speakers Dr.
Elizabeth Dowsett is attending as is Doris Jones.
As far as the media is concerned we have Radio
Five Live who will be transmitting live to the conference and also ITV
will be filming the event. UK national newspapers have been
invited and some have already accepted.
Our original aim with the conference
was to attract healthcare staff to listen to some of the leading experts
on ME and, hopefully, change perceptions relating to ME. Just one
change in the knowledge of one healthcare practitioner could be
significant. We are pleased to write that we have delegates attending
representing PCTS, GP practices, CNCC/ME Clinics, Universities,
Educational services and occupational therapists and clinics.
And, of course, individuals with ME and their
carers or parents. Without their support we could not have made this
conference a reality.
More details of the conference can be
found
at
this link.
Are we surprised that the largest national
charity which, in part, purports to be interested in ME and people with ME isn't sending anyone?
Well, no. Yet, with a recent grant of £1/2 million pounds to study the effects
of ME on families, we feel that they may have sent one
person. One is left to contemplate what £1/2 million pounds could do for
biomedical research into ME.
And
Professor Sir Colin
Blakemore from the Medical Research Council should have had some interest (see
Around Westminster later in the newsletter). Just someone from the MRC could be
interested in what results are being produced and how they affect ME. He
was offered a free place for the MRC but there has been no response yet.
From the government,
Patricia Hewitt - well, you won't be seeing her either, although we did actually
receive a reply to our invitation.
And Liam Byrne MP? Many in the UK will know Mr. Byrne - he is quite good at signing letters. He
often uses the standard Department of Health denial template letters to send back to
parents/carers or pwme, or their MPs, a reply in response to their queries about the
state of treatment and funding. He wasn't as generous with his time in producing a
response to our offer to attend the conference as absolutely no response was
received. Maybe their isn't a DoH template for such a request.
Invest in ME have decided to film the ME
Conference and produce a record of the event. This will contain all of the
presentations by the speakers and will be available after the conference. We also hope to have additional material
on the dvd or cd which will be produced.
More details of
that next month. Once costs have been finalised we shall
be announcing the price and distribution details. To order or find more
details on ordering of ME Conference 2006 - the Film please use
this link.
The presenters at the conference are
well-known throughout the ME community, and beyond. Use the links
below to get more information or use the
IiME
site map feature to browse the IiME site, or the web for more.
Presentation
Presenter
Click picture for more details
Welcome/Opening Address
Invest in ME
Key Note: The Independent
Parliamentary Inquiry - Update on progress made and
outcomes.
Dr. Ian Gibson MP for Norwich
North and Chair of the Parliamentary Group on Scientific Research
into ME
Definitions and
Aetiology - The Importance of Diagnostic Criteria
Dr.Bruce Carruthers Principal Author
of the Canadian Guidelines
Research Overview:
Summary of "Key Findings" of past bio-medical research
Professor Malcolm
Hooper Emeritus
Professor of Medicinal Chemistry, University of Sunderland
Children and Education:
Incidence, Clusters and Specific Problems of Youngsters with M.E
Jane Colby Former Head Teacher; Executive
Director of Tymes Trust
The Epidemiology,
Definitions and Techniques of Investigation of the ME and CFS
patient and the Resulting Pathological Findings
Dr. Byron Hyde Nightingale
Research Foundation
Research: Viral and
Human Gene Expression; Development of Diagnostic Test; News of
clinical trials
Dr. Jonathan Kerr Sir Joseph Hotung Senior Lecturer in
Inflammation,
St. George's University of London
Research: Lipid
Neuroscience - an Overall Picture of (and links to) Other
Treatments/Research
Professor Basant Puri
Consultant at
Hammersmith Hospital
The Way Forward - Open Forum Proposed Topics for
Educational Support and Future research and Reasons Why
As promised this month we have a short
update from
Jonathan Kerr on his research studying the genes of ME
patients. We have added this brief update to our Guest Speaker page
located here.
If you know of events planned to support
education on ME or fund-raising for
biomedical research then please
contact us
with any news or information. Look in the Events page - see
here.
With
the first of the Parliamentary Group on Scientific research into ME
having been held and charities and organisations having been invited
to address the Group the next step is hear from individuals affected
by M.E. Professor Malcolm Hooper has commented on the first meeting
- see his summary
here as well as
news on the inquiry.
The recent All Party Parliamentary Group
(APPG) meeting was opened to
the public after many groups and individuals (including IiME) had
written to Des Turner, chairman of the APPG.
Attending also was Colin Blakemore, chief of the
Medical Research Council. As we mentioned in the last newsletter
education is the all important issue with ME and Mr. Blakemore
himself not being able to inform whether MRC spending on ME was 8%,
0.8% or .008%!! As most of that will be spent on PACE and FINE
trials it is left to wonder if there really is a coordinated policy
to cure M.E. or do we have a systemic failure at the heart of the
MRC.
Thanks to Friends of IiME for their
activity in contacting their MPs. We are awaiting results from a
further 30 MPs. At the time of writing the status of the EDM
260/260A in parliament still stood at 225/21 -
see campaign page
Gary has provided his experiences of the results of a Hep-B
inoculation.
"I
was assessed for one ME clinic but they said I
was too disabled and that there were other
issues that needed to be worked on. They also
said that because I was confined to a wheelchair
they thought that would be too upsetting for the
other members of their group."
Thanks to Gary for submitting this. Read more of Gary's story
here.
Read more on vaccinations, antibiotics and ME
here.
Recent efforts for raising money for
research charities include Serena
Blanchflower's
Pledge for Merge, which successfully achieved its objective, and
also Paul
Murray's
London Marathon run which has practically reached its target at
the time of going to press.
And IiME would like
to thank Enid Florence for her donation to the ME Conference, even
though she can't be there in person.
Well,
we tried. Invest in ME sent in a submission to Google to mark ME
Awareness Day with a Google Doodle. Did they listen? Will they do
it? We don't know. But let's be optimistic - Google are not saying
anything because they'll surprise us on the day. More details
here.
With
the first of the Parliamentary Group on Scientific research into ME
having been held and charities and organisations having been invited
to address the Group the next step is hear from individuals affected
by M.E. Professor Malcolm Hooper has commented on the first meeting
- see his summary
to
the public after many groups and individuals (including IiME) had
written to Des Turner, chairman of the APPG.
link to the home page. Read more on