Invest in ME Newsletter

 

ME AWARENESS MONTH - MAY 2009 Nr. 09/04-05

Welcome to Invest in ME's April/May 2009 newsletter - ME Awareness Month 2009.

IN THIS ISSUE
ME Awareness Month 2009
International ME/CFS Conference
Hillary Johnson
The MRC Panel
ME Story
Forward ME
Norway ME Event
ME Petition
Accounts

 

Young Lives, Lost Voices - ME Awareness Month 2009

May is ME Awareness Month. Why ME Awareness MONTH - click here? What is happening during May? For those organising events please contact us to allow us to publicise your event or news.

 

Amongst IiME's events are the following -
 

Invest in ME on TV - 1st May

IiME begins the month by continuing its focus on severe ME and we will be on Sky TV in the Good Morning Manchester TV programme on 1st May from 09:45 - Sky channel 802.
 

Roisin Mirza, sister of Sophia, will be representing IiME. So please tune in if you can.

 

ME Exhibition London 6th - 31st May

Steve Craig is launching his exhibition of paintings, sculpture and poetry.The exhibition shows one person's struggle towards an understanding and an acceptance of living with ME /CFS. The exhibition will be at a large country house in Enfield this year. Last year's show had an amazing feedback, and hopefully this will do better as its a higher status venue.  More details can be found by clicking here.

 

Lost Voices for a GP -    1st - 31st May

During the month of May Invest in ME will be further subsidising our Lost Voices book by offering it for just £5 when purchased for a healthcare professional or department. The idea is to allow healthcare professionals to be aware of the effects of severe ME as well as read of the facts about ME from Annette Whittemore, Dr John Chia, Dr Vance Spence and others.

This follows the distribution of Lost Voices to medical libraries thanks to the efforts of Stacey and friends.

The new price of the sponsor a book appeal will be set during May via this link and IiME arrange for the book to be sent direct to the healthcare professional or department concerned with details of where it came from, if desired.

 

Hillary Johnson Presentation - 28th May

The pre-conference Hillary Johnson presentation dinner is on 28th May in London with the subject of the CDC and its Influence around the World being discussed. With presenters from the conference also attending the evening is likely to be very educational. If you are interested in attending this unique event please contact us at info@investinme.org

 

Conference 2009 - 29th May

And finally ME Awareness Month ends with the premier European biomedical research conference in London focusing on severe ME. We hope this year will be a very special and memorable occasion.

 

Journal of IiME

The latest version of the Journal - a conference special - will also be published in May and will be available, for free, via this link - click here.This edition has some very interesting articles as well as serving as part of each delegate's conference pack.

The International ME/CFS Conference 2009 News

Management, Treatments and the Latest Advances in Research into ME/CFS

CONFERENCE  NEWS
Home Registration Agenda  Venue Conference Flyer Sponsor a Professional Hillary Johnson Presentation Past Conferences

The Alison Hunter Memorial Foundation

Sponsors the 4th Invest in ME International ME/CFS Conference 2009

The Alison Hunter Memorial Foundation of Australia has agreed to sponsor the Invest in ME International ME/CFS Conference 2009 by providing funds for the production of the DVD. This will enable IiME to provide another CPD-accredited conference on DVD to those around the world who would wish to be present at the conference but cannot.

Invest in ME wish to thank the AHMF for this supremely generous offer - an offer which allows us to achieve another of the objectives of the conference.

The AHMF is an inspirational and enduring memorial to Alison Hunter and all those whose lives have been devastated by ME/CFS. Read more click here.
With a disease lacking a diagnostic test everyone's an expert...everybody knows someone's niece or cousin twice removed who went to see Dr So-and-so and now she's climbing mountains. Each new regime might be 'the One' to set things moving in the right direction. They stretch from the sublime to the ridiculous but you must try them all lest "don't you ever want to recover?" These treatments aren't always benign, leaving you worse off than when you started, not to mention emotionally and financially. - Alison Hunter 1993
 

Please read this [http://www.ahmf.org/forgetmenot.html] and then ponder the thought that these words are just as true today as they were when Alison wrote them in 1993. Alison's story could be taken from the pages of Lost Voices, published in January 2009.

Appropriately the emphasis at the IiME 2009 conference is on severe ME.  

From its inception Invest in ME have been attempting to show the international dimension to ME and how it requires international cooperation. Our sponsors so far are AHMF and IMET - both great supporters of people with ME. 

The offer from AHMF not only provides a financial boost which allows us to complete the conference planning. This also provides welcome support and encouragement to keep going.

Support such as this, coming from respected organisations in other countries, is something about which we feel very honoured.
 

 More Conference News

 
The refusal by the Chief Medical Officer in the UK to attend yet another IiME biomedical research conference concerning an illness affecting so many hundreds of thousands of lives should be embarrassing enough. How much more embarrassing can it get for the UK CMO?

Well, the Irish Deputy Chief Medical Officer is attending the conference.

Thanks to our European ME Alliance partners at IMET the Irish Deputy CMO will be present at both the Hillary Johnson presentation dinner on 28th May as well as the full Invest in ME conference on 29th May

    "A small but important part of my work involves international health matters. This involves some overseas meetings, particularly under the auspices of the World Health Organisation, and receiving visitors from other countries."

    "Some of my day will be taken up with visits or speaking at conferences."

    - Sir Liam Donaldson (UK CMO)

    - from the Role of the Chief Medical Officer
Sir Liam is still welcome to take up his place at the conference.

Invest in ME are happy to note that a prestigious medical journal will be represented at the conference and will be writing a news story about it.

Currently we plan on welcoming representatives from fourteen countries to the conference including our first guests from Russia.see here).

IiME have offered to include a notice for delegates at the conference regarding the MEA Tissue Bank, as we did at the IiME conference in 2008.

An early bird discount purchase prices of £10 (for UK customers, prices outside of UK may be slightly higher) will be set for the DVD of the 2009 conference fro all advanced payments received during the month of May. More details will be available on the web site shortly.
 

Hillary Johnson Presentation - Osler's Web
As mentioned the Hillary Johnson presentation dinner in London on 28th May is practically sold out. Copies of Hillary's definitive work on ME - Osler's Web - will be available to purchase at the presentation. Hillary will also be present at the conference. In the meantime, if you wish to learn more of Hillary's work, then visit her website at www.oslersweb.com. 
 

MRC Panel

It is one year ago [see http://www.investinme.org/IIME%20Newsletter%20Apr%2008.htm], since our April 2008 newsletter expressed our concern about the intention to bring together the biological and psychological ME/CFS factions, in order to encourage the Medical Research Council panel led by Professor Stephen Holgate to give money. An Autumn 2009 workshop has now been announced for this panel which, it is claimed, will be looking at various biomedical research areas - with an aim of bringing in new ideas and new researchers.

A year on from that newsletter -

-        this panel has not yet agreed on what guidelines are used to define ME leaving the way open for the continued usage of a mixture of flawed criteria to define almost anything 

-        there are forces within the panel which seem actively to be working to eliminate ME from the WHO ICD-10 G93.3 category as a neurological illness

-        the Terms of Reference for this panel have not been announced

-        the peer reviewing mechanism for reviewing research proposals has not been finalised (though we know that historically the MRC has been biased by rejecting high quality biomedical research proposals yet agreeing to fund the flawed PACE and FINE trials - trials already compromised by the underlying flaws in the perceptions of those carrying them out and the guidelines used to determine participants.

-        we do not know what intent Professor Holgate has for the other, non-biomedical research proposals likely to come forward though we suspect these will undoubtedly find funding from the MRC.

This panel has decided on an all-inclusive approach to ME (using the ubiquitous "multi disciplinary" buzz-word) and this has led to the panel being diluted with the inclusion of a number of Chronic Fatigue researchers. This all-inclusive approach to the set up of this panel has not, however, been extended to ME support or patient organisations with only AfME and MEA invited to attend.

The fact remains that two years will have gone by before it even discusses any research proposals. Who knows how long will pass before any funding is committed to real biomedical research? It is astonishing that it will have taken so long for the MRC to have achieved so little and reinforces fears that it may be another delaying mechanism - spinning out apparent progress which merely wastes lives.

Any ME support group would have been able to indicate where the MRC's priorities should lie in producing a strategy for ME. Invest in ME even facilitated a meeting for the MRC with the Whittemore-Peterson Institute to progress this - it was ignored by the MRC.
 
We hope that the MRC will seriously fund biomedical research - yet we wonder still if other research organisations and individuals who join the MRC panel in search of funding will be forced into performing watered-down research similar to the above-mentioned PACE and FINE trials.

It is typical of the MRC that information from this panel is so sparse and only orchestrated through the individuals representing the establishment charities on that panel. This drip-feed information supply is indicative of another closed-shop approach to ME.

ME Stories

One of the stories quoted a year ago in the April newsletter referred to Ryan - a boy in USA. Our quote was this -

Ryan is often too weak to use a regular wheel chair. Insurance is denying the motorized wheel chair prescribed by an MD, and fitted for Ryan by a medical supply company that originally had a work order *from* the insurance company to go to the home and fit a special chair. Why would that happen?

- See Ryan's Story


At this time Ryan is in a foster home, the parents charged with medical abuse and "Fictitious disorder by Proxy." The situation is entirely unbelievable. Ryan's mother, Lisa, has expanded her website to include the latest details - http://www.parentsagainstmedicalabuse.com/

Invest in ME sent a copy of Lost Voices to the Governor of North Carolina in the hope that severe ME could be seen for what it is and perhaps some of the health officials there would begin to understand how ignorance and simplistic myths about the illness can lead to serious consequences for ME patients.

Forward ME Meeting

The Forward ME group was reported on in our October 2008 newsletter. One of the statements made at the formation of this group, and one which we wholeheartedly supported, was that all workings of the group would be transparent.

Following the NICE guidelines Judicial Review decision one of the members of the group (the 25% Group) decided to withdraw from the group and issued a statement that they could not and would not work with two members of the group (AfME and AYME) who had supported the NICE guidelines.

At the time of that decision by 25% Group IiME were preparing a statement for the Forward ME group following the NICE decision.

We set up a web page [see here] which shows our views as submitted to the Forward ME group.

Norwegian News

News from our European ME Alliance colleagues in Norway of another conference - this time in Stavanger. More details are available - click here.

Another Petition
We call on the Centers for Disease Control and Prevention (CDC) to stop using the "empirical" definition[1] (also known as the Reeves 2005 definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS research.

The CDC claim it is simply a way of operationalizing the Fukuda (1994) definition[2]. However the prevalence rates suggest otherwise: the "empirical" definition gives a prevalence rate of 2.54% of the adult population[3] compared to 0.235% (95% confidence interval, 0.142%-0.327%) and 0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition was used in previous population studies in the US[4,5].

The definition lacks specificity. For example, one research study[6] found that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the empirical/Reeves definition.

This petition, set up by Tom Kindlon, calls for the CDC to stop using the empirical definition (2005) for ME.

The empirical definition identifies such a broad range of patients that it can include people who are physically able to run a marathon. Such absurdities allow the figures of prevalence of ME/CFS to be raised from 0.4% of the population to over 2.5% in a recent study.

As such the empirical definition is worthless for serious scientific studies. It will be very interesting to hear Hillary Johnson speak on the subject of the CDC influence in her presentation in London on 28th May.

The CDC has recently announced its 5 year research plan for CFS http://www.cdc.gov/cfs/draft_research_plan.htm calling for evidence based management and information. Using the Reeves empirical definition will likely produce research similar to that performed in the UK which used the broad Oxford criteria, which in turn produced the so called evidence based NICE guidelines which are so discredited. If you don't want the CDC copying the UK model then please sign this petition.

Please sign this petition - click on this link -

http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/index.html

Invest in ME Accounts

We have published our accounts for the last year and have a web page for all to see which also contains our Annual Report - see http://www.investinme.org/IiME%20Accounts%20Reviews.htm.

Best wishes to all

Invest in ME

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