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Welcome to the Invest in ME Newsletter for December
2007.
It is near to the end of one of the busiest years ever
for people with ME with the ups and downs of progress and
setbacks occurring during the last twelve months.
In this newsletter we
shall just concentrate on looking ahead and stay focused
on the end result.
Invest in ME have news of our annual International
ME/CFS Conference for 2008 - the third in the series of
biomedical research conferences which IiME have
organised. our theme for the conference is Sub Grouping
and Treatments of ME/CFS.
We can also hope that ME Awareness Month 2008 is
filled with activities around the world which will help
progress the cause of people with ME.
Invest in ME have tried to remain
pro-active with our campaigning and have
written to the Secretary of State for
Health and his appointed minister who is
tasked with looking into the issue of
ME. We have not had a positive response
and it has been disappointing to see
again the standard approach being taken
by the Department of Health - one of
apathy and misinformation. IiME will be
taking this up again however.
Many thanks from all at IiME to our supporters for
your donations during the year, for your emails and
letters of support and for all of the work that many do
on behalf of people with ME and their families - all of
it unpaid and occurring in the background.
Happy
Christmas to
everyone.
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IN THIS ISSUE |
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The International ME/CFS Conference 2008 |
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Invest in ME in your FACE |
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ME Awareness Month
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NICE - Under Review |
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Norwegian Conference on ME |
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ME Letter Project |
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Tissue Bank |
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ME stories
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Education on ME/CFS |
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Ways to Help at Christmas |
The International
ME/CFS Conference
2008
Sub Grouping and
Treatments of ME/CFS 
The 3rd
Invest in ME International ME/CFS
Conference 2008 will be
held on 23rd May 2008.
The conference builds on the
successful biomedical research
conferences held by Invest in ME in
previous years.
The 2008 conference will have as
its theme Sub Grouping and
Treatments for ME/CFS and we have a
wealth of experience from some of
the most renowned experts on this
illness in the world.
As in previous
years Invest in ME aim to raise
awareness of myalgic
encephalomyelitis and of the
necessity for a comprehensive,
national strategy of biomedical
research into ME/CFS.
The conference
will inform delegates of the current
situation regarding definition,
diagnosis and treatment of ME/CFS by
the most renowned experts on
ME/CFS in the world.
Although the
agenda is still being finalised we
have great pleasure in confirming
the following experts on ME/CFS who
will be presenting at the
conference.
The Speakers
Dr.
Leonard Jason
Dr Jason is
among the most prolific of all ME/CFS researchers. For more than a decade,
Dr. Jason and his team at DePaul University’s Centre for Community Research
in Chicago have worked to define the scope and impact of ME/CFS worldwide.
Dr John Chia
Dr Chia is
an infectious disease specialist
practicing in Torrance,
California, USA and
has published research recently
(Chronic fatigue syndrome
associated with chronic
enterovirus infection of the
stomach) on the role of
enteroviruses in the aetiolgy of
ME/CFS – an area which has been
implicated as one of the causes
by a number of studies. There
are more than 70 different types
of enteroviruses that can affect
the central nervous system,
heart and muscles, all of which
is consistent with the symptoms
of ME/CFS. By analyzing samples
of stomach tissue from 165
patients with CFS, Dr. Chia's
team discovered that 82% of
these individuals had high
levels of enteroviruses in their
digestive systems. Dr Chia's
research may result in the
development of antiviral drugs
to treat the debilitating
symptoms of ME/CFS.
Dr Martin
Lerner
Dr Lerner
is an Infectious Disease
Specialist in Michigan, USA. Dr
Lerner holds five Patents for
Diagnosis and Treatment of CFS.
Dr Lerner also heads the Lerner
CFS Foundation which hopes to
establish a molecular biology
laboratory to develop specific
diagnostic testing for subsets
of ME/CFS and a training centre
dedicated to the training of
medical professionals in the
treatment of those suffering
from ME/CFS.
Dr
Jonathan Kerr
Dr Kerr has
recently published results from
his research over the last year
which includes identification of
7 sub groups of ME/CFS patients.
Dr Kerr has been involved in all
of the IiME conferences and we
are glad to welcome him back at
this crucial stage in biomedical
research of ME/CFS. The theme of
our conference will complement
Dr. Kerr's research very well.
Dr Julia Newton
Dr Newton is
Senior Lecturer at the Institute of
Cellular Medicine, Newcastle
University. Dr Newton has been
working on autonomic dysfunction in
ME/CFS patients and will be
presenting results of her continuing
research.
Dr Irving Spurr
Dr Spurr is
a GP and brings enormous
experience of ME/CFS to the
conference. Dr Spurr worked with
Dr John Richardson on
enteroviruses and their
implication in ME and is
chairman of the John Richardson
Group.
Dr Judy Mikovits - The
Whittemore-Peterson Institute
At the last
IiME International ME/CFS
conference we had Annette
Whittemore and Dr Daniel
Peterson presenting news and
research information from
the Whittemore-Peterson
Institute in Nevada, USA. IiME
are proud to have brought news
of this exciting development to
the UK audience and we shall
continue our links with the WPI
by hearing news of their
continuing research and plans.
Dr.
Mikovits obtained her Ph.D. in
Biochemistry and Molecular
Biology from George Washington
University. She is Research
Director at the WPI and has
co-authored over 40 peer
reviewed publications that
address fundamental issues of
viral pathogenesis,
hematopoiesis and cytokine
biology.
We are also
honoured that
Professor
Malcolm Hooper will be
chairing the conference proceedings.
The conference
will appeal to healthcare
professionals, doctors, nurses,
paediatricians, occupational
therapists, researchers, ME support
groups, people with ME and those
working in social services,
educational support and the media.
Invest in ME
conferences have covered
epidemiology, aetiology, pathology,
diagnosis, treatment and
current/future biomedical research
into ME/CFS. This is an ideal
opportunity for staff working in
PCTs and hospitals and ME/CFS
service provision to work together
with patients and patient
organisations to understand the
issues around ME/CFS.
We would like
to ask all ME Support Groups and
families to approach their local
physicians and help us help them to
understand more about ME/CFS by
attending the conference. We have a
special discounted rate for
healthcare staff via our
Sponsor
a GP scheme.
Previous Invest
in ME International ME/CFS
conferences have been CPD-accredited
and accreditation will be applied
for. The full day agenda will be
finalised shortly.
More details of the
conference will be
available on our
conference web pages
via this link.
Invest in ME -
In Your FACE (Book)
We would like to
thank Helen Garnett for
setting up a Face book
entry for ME. Helen
has created a group on
Facebook called
Surviving M.E..
One needs a Facebook
account (which is free)
to see these and, as
Helen points out 'the
Facebook group is a very
popular way of making
contact, particularly
for the younger
generation, and could be
quite a life line for
some M.E. sufferers.'.
This is a great idea
from Helen and we urge
all the Face users out
there to make contact
with Helen's Face entry.
We had actually
started a Facebook entry
last summer but did not
have time to progress
it. However, we have now
augmented Helen's idea
with an
Invest in ME
Face book entry and we
hope that together these
will attract more people
to look at what is
happening with ME/CFS in
this country and support
the cause to get justice
for the patients and
families who are having
to suffer from this
illness due to lack of a
proper strategy for
biomedical research into
ME/CFS.
ME Awareness
Month 2008
Next May will be ME
Awareness Month and
Invest in ME have
emailed a number of
organisations around the
world to join forces and
cooperate in raising
awareness of ME/CFS.
IiME have set up a new,
universal web domain -
www.meawarenessmonth.org
- which we hope will be
a central point of
contact for all events
taking place to raise
awareness of ME/CFS and
fund-raise/campaign for
biomedical research into
ME/CFS. Still in its
early stages of
development this address
will be
non-organisation-specific
and will be developed
over time.
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NICE - Under
Review Again
Invest in ME
submitted our
appraisal of the
official NICE
guidelines for
ME/CFS and warned of
possible actions to
take NICE before a
judicial review. We
have heard of a few
possible actions
being taken in this
area which are
underway - one of
them being the
One-Click group's
plans (more
details
here).
There are other
actions in the
process of being
developed and we
shall report on
these when these are
nearer completion.
This
unsatisfactory
state is a
reflection on
the poor quality
of the NICE
guidelines and
one can only
feel a sense of
disappointment
that NICE have
again failed
people they
should be making
provision for.
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Scandinavia Energising ME Awareness
IiME wish to congratulate our
Scandinavian colleagues on their work to
raise ME awareness in their countries.
In Sweden the RME group have organised
seminars in Stockholm and Malmo with
Professor Malcolm Hooper and the
Whittemore-Peterson Institute
presenting. Links to their presentations
are here (the page is in Swedish but
the associated pdf documents should be
in English).
 Our
Norwegian colleagues have
successfully organised the recent
International Association for CFS/ME
(IACFS) conference in Oslo in October.
We hope to translate the Norwegian ME
Association's report of the conference
shortly.
Although a bit later
than we wished we would like to
highlight this project whose aim is to
contact as many MPs as possible
regarding ME/CFS. Similar to some of the
objectives with IiME's ME & My MP
campaign this ME Letter Project is
available here.
The main goal of the ME
Letter Project is to highlight the need
for research into the physical causes of
ME and to discover the aetiology of ME
and to one day find a treatment. Every
sufferer, carer and family member of
someone with ME is asked to print a copy
of this letter and send it to the
Government and the media.
The ME & My MP campaign
is going to be revamped and will
hopefully work alongside the ME Letter
project. Good luck to all involved in
this.
Our
Newshound
We'd like to thank
Dr. John Greensmith
for his continuing
(and successful)
efforts in gaining
publicity for ME of
the right sort
within the media by
picking up on
misinformation and
responding quickly
and eloquently to
counter this. It is
worth repeating that
education about ME
needs to be provided
at every opportunity
in order to remove
established myths
and old-fashioned
perceptions about
the illness. John's
contact for any
stories appearing in
the press is info(at)mefreeforall.org.
Tissue
Bank
We
would
also
like
to
highlight
the
ME
Association's
Tissue
Bank
project
which
aims
to
retain
tissues
for
later
analysis
for
ME/CFS
research.
IiME
are
hoping,
where
possible
and
when
funds
exist,
to
contribute
to
the
Tissue
Bank
project.
This
was
one
of
our
objectives
with
the
last
International
ME/CFS
Conference
in
May
and
feel
it
will
be
an
important
step
forward
and
a
building
block
for
future
research.
Education
on
ME/CFS
We have
set up
an
education
page for
IiME
educational
materials
(click
here).
Use this
link to
stay up
to date
with
some
useful
tools to
help
educate
about
ME/CFS.
These
are
The
Journal
of IiME
The
Canadian
Guidelines
Just a
reminder
that we
recently
published
the
second
issue of
the
Journal
of IiME.
Thanks
to
everyone
for all
of the
positive
comments
returned
regarding
the
Journal.
Final
Reminder
for
ME
Petition
A
last
chance
to
add
your
name
to
the
ME
petition
submitted
by Konstanze
Allsopp
to
get
the
Health
Service
and
medical
profession
to
accept
the
WHO
classification
of
ME/CFS
as
an
organic
neurological
disorder
and
not
as a
psychosocial
syndrome.
The
link
is
here.
Christmas
and Ways
of
helping
ME
We add
here our
ways of
helping
ME at
Christmas.
Please
look at
our
winter
page for
ways to
help
fundraise
-
click
here.
At this
time of
year
IiME
would
like to
extend
our
sympathies
to
Criona
Wilson,
mother
of
Sophia
Mirza.
It is
now two
years
since
Sophia
died. Criona
has been
battling
the
establishment
in an
attempt
to get
explanations
for
Sophia's
treatment.
In
October
news
came
that
Criona
had lost
her case
which
she had
taken
before
the GMC.
There
is no
right of
appeal.
Contacts:
Inquiries to Invest in ME -
info@investinme.org
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