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Invest in ME Newsletter February 2009
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Welcome to
the February IiME Newsletter
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IN THIS ISSUE |
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International ME/CFS Conference 2009 News |
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Hillary Johnson at IiME Conference |
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Lost Voices update |
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NICE |
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A month in the Life
of....Calendar of the Chronically Ill |
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News from WPI |
IiME
International ME/CFS Conference News
IiME would like to
thank our European ME Alliance partners, the
Irish ME Trust
(www.imet.ie), for
once again helping us with the conference by sponsoring a speaker. This is the
third year that IMET have assisted IiME in producing the International Conference and
shown their characteristic generosity as well as vision. Producing the
conferences relies on the generosity of the presenters in giving their time for
free, and on healthcare staff, patient groups, patients and carers who attend
the conference. The trustees of IiME willingly bear the bulk cost of the
conference costs as we passionately believe that education around this illness
is the key to removing biased and incorrect perceptions and generating new
possibilities for research and lobbying. But without donations such as that from
IMET it would be very difficult for IiME to carry all of the remaining costs of
the conference alone. So, if you attend the conference on 29th May, please go up
and say a thank you to Declan and Michael who will be representing IMET.
The conference
agenda is now completed and
available here.
The conference
has also received the maximum 6 points of CPD accreditation for the conference
from the Royal Colleges.
We are very
pleased to welcome back Dr Judy Mikovits to the conference - discussing
the research and diagnosis of difficult and complex medical cases of ME.
Our thanks to ME groups who have taken our conference flyers.
We have added an A4 poster also (see
flyers is available here).
As mentioned
last month IiME is also self-funding some tickets for medical students as part
of our newly established IiME Biomedical Research Fund. We are happy to receive
suggestions on possible academic institutions whom you feel would benefit from
an offer of free places for medical students. Please contact us at
info@investinme.org.
IiME would like
to thank our European ME Alliance partners, the
Irish ME Trust (www.imet.ie),
for once again helping us with the conference costs and again have shown their
characteristic generosity as well as vision.
Producing the
conferences relies on the generosity of the presenters in giving their time for
free, and on healthcare staff, patient groups, patients and carers attending the
conference. Without donations such as that from IMET it would be even more
difficult to stage conferences like this. So, if you attend the conference on
29th May, please go up and say a thank you to Declan and Michael who will
be representing IMET.
Click here for conference home page
Minister Invited to Conference
The invitation from the Whittemore-Peterson Institute last year to Mrs Ann Keen
MP and Mr Alan Johnson (Secretary of State for Health) to visit their facilities
in Nevada was never taken up. Indeed the Department of Health seem to have lost
the invitation completely. No matter - if the secretary of state cannot get to
the mountain , the mountain must come to the secretary of state - and both Mrs
Keen and Mr Johnson have been invited to the conference on 29th May to meet and
listen to Annette Whittemore and Dr Dan Peterson, founders of the WPI . We hope
that on this occasion they will make time available to attend the conference. It
would be interesting to see them promote their own department's constitution for
England -[http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_093419]
..it has a wider social duty to promote equality through the
services it provides and to pay particular attention to groups or sections
of society where improvements in health and life expectancy are not keeping
pace with the rest of the population...
...We respond with humanity and kindness to each person's pain, distress,
anxiety or need. We search for the things we can do, however small, to give
comfort and relieve suffering.....
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Author of Osler's Web at IiME Pre-Conference
Presentation
On the evening before the
conference Invest in ME are pleased to welcome the famous journalist Hillary
Johnson to London. Hillary, author of
Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic -
see here
- will be guest presenter at a pre-conference dinner with the speakers. We still
have some tickets available for this dinner and we hope all of the conference
presenters will be in attendance - please
see here for details.
Hillary will be giving a presentation on how the US Centre for Disease Control
has affected the way ME/CFS has been perceived, not just in America but around
the world. For those who haven't read the book we would highly recommend it.
There will also be an opportunity to buy the latest version of the book at the
conference.
Lost Voices
Thank you to all those who have purchased our Lost Voices book
and who have taken the time to comment on their impressions of the book.
We
have set up a page (see
here) for recording comments about the book. Some comments so far from people purchasing the book -
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"The poetry and prose is so excellent, explaining so clearly that this
disease has such devastating effects for both sufferers, families, friends and
employers."
"I hope the book will be read by many people who are currently
misinformed or apathetic, and that changes will start to take place. I found it
very moving."
"I have never seen anything like it and we are all proud to
be part of this landmark book. Thank you so very much for giving us a voice. You
have done something truly amazing." |
IiME have self funded and distributed over 150 free copies and many have gone to
MPs, healthcare professionals and the media - including the health editors of
all the national newspapers - in order to help change perceptions of ME.
If
anyone would like to help us in this we have set up a
Sponsor a Book
page which
allows one to purchase a book for someone else. IiME will post the book directly to the
address supplied -
more details here. Thanks to John, Joy and Natalie for helping already with
this scheme.
The Lost Voices home page is here
-
click here.
NICE - Judicial Review - 11-12th February 2009
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2nd
BEST IS NOT GOOD ENOUGH
These
guidelines are unacceptable.
NICE has
failed in delivering anything worthwhile.
These
guidelines are unfit for purpose.
NICE has shown
itself unfit for purpose.
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The conclusion to IiME's response to the NICE
Guidelines for ME as documented in September 2007.
IiME have already set up a page devoted to NICE which includes
our submissions and responses to the unsatisfactory guidelines [see
here].
The Judicial Review is, in itself, evidence of
the failings of NICE and is symptomatic of the problems with the NICE guidelines
- problems which are at the heart of this ineffective and prejudiced
organisation where vested interests influence the decision-making and where
saving money seems more important than saving lives.
Whichever way the verdict goes in this case NICE
is perhaps irrevocably damaged. Having lost the trust of the ME community, save
of those ME organisations which have accepted government money to support
government policy (see December newsletter
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Section 64 Grants), NICE can no longer be entrusted
with any role in arbitrating on the healthcare of people with ME.
Why NICE is Unfit for Purpose
A month in the Life of......Calendar of the
Chronically Ill
gives a harrowing account of living with severe ME
- more proof that NICE and their guidelines and their sole recommendations for
using CBT and GET provide nothing to help with people
coping with or suffering from this illness.
Click
here.
The Judicial Review of NICE takes place in London on 11th and 12th February.
The Whittemore-Peterson Institute
Just as NICE may do irrevocable damage to
the healthcare systems of other countries who adopt their approach to ME, so the Whittemore-Peterson Institute carries the beacon of hope for all those around
the world waiting for advances to treat or cure ME with their strategic
approach to biomedical research into ME. From the Reno Gazette Journal -
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"People from across the
nation and around the world who suffer from (ME) and other
neuroimmune diseases are waiting anxiously for the opening next
year of a new medical research center at the University of
Nevada, Reno.
The $86 million Center
for Molecular Medicine will expand the university's research
capabilities into cancer and other diseases and house the
headquarters of the Whittemore Peterson Institute, which offers
hope in the form of clinical trials and treatment for people who
suffer from such diseases as (ME), fibromyalgia and atypical
multiple sclerosis."To look at what the British government and NICE
should aspire to then look no further than the developing Whittemore-Peterson
Institute for Neuro-Immune Diseases.
With the founders of the WPI and the Research
Director of the WPI all present at the conference on 29th May there will be lots
to discuss.
For the news story
click here. |
Kenneth Hunter is
chairman of the Department of Microbiology and Immunology at the
University of Nevada, Reno, and Dr Judy Mikovits is the director of
research with the Whittemore Peterson Institute for Neuro-immune
Disease. |
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Donations to the WPI can be made here - click here. |
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ME
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Last Updated:
04/05/2009
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