Newsletter May 2006

Newsletter
No.06/03 / May 2006
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.

IN THIS ISSUE

Background to the conference
Who is attending the conference
and who isn't coming....
Order the conference film
Conference Presenters
Guest Speakers
MAY Events - Have a Cuppa for ME
Around Westminster
ME Experiences-Vaccines, Antibiotics & ME
Funding Biomedical Research
Google Doodle
Other News
 The news that two main ME Centres have decided to adopt the Canadian criteria
Invest in ME Conference 2006
 (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 Conference Presenters

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  

 



Guest Speakers

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.
 



Events for 2006- Have a Cuppa for ME

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.



Around Westminster

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



ME Experiences/Vaccines, Antibiotics - ME

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.

Read other ME stories here.



Funding for Biomedical Research

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.

Have you taken a MERGE collection box yet? Let us know if you take one and we'll put it on the map.

2006 MERGE Boxes for 2006 appeal.




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.



IiME has now a European domain - www.investinme.eu is now registered and we hope to make use of that in the future as we take the campaign to Europe.




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