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Invest in ME Newsletter
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Welcome to
Invest in ME's January newsletter.
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IN THIS ISSUE |
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International ME/CFS Conference |
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"Lost Voices" -
the ME Book Project |
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IiME and MHRA |
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All Party Parliamentary Group on ME/CFS |
The
International ME/CFS Conference
2008
Our
agenda for the International ME/CFS Conference on 23rd May
2008 is now nearer completion and will soon be available
here. The theme is Sub Grouping and Treatments of
ME/CFS. IiME feels that it is now time to differentiate
between various possible
aetiologies, if possible, and there
is enough good quality research and experience to enable
this to occur.
Dr John Chia's research is validating the work the late Dr
John Richardson was doing for many years regarding
enteroviruses. Enteroviruses cause acute respiratory and
gastrointestinal infections, with well documented tropism
for the central nervous system, heart and muscles. Dr Chia’s
recent analysis of 200 patients identified a number of
potentially treatable infectious aetiologies, enteroviruses
being causative possibly in more than half of the patients.
Other infections which have been linked to ME/CFS are
Epstein-Barr virus, cytomegalovirus (CMV), parvovirus B19,
Brucella, Toxoplasma, Coxiella Burnetti, Ross river virus
and Chlamydia pneumoniae.
Dr Chia's latest research,
which appeared in the Journal of Clinical Pathology last
year, was heavily publicised (see
this link and
this link).
Dr Martin Lerner and his team have concentrated their
efforts in accumulating evidence for persistent herpes virus
infection (Epstein-Barr virus, Cytomegalovirus and Herpes
virus 6), singly or in combination. Dr Lerner has extensive
experience of treating patients with specific antiviral
medicines. More details can be seen from Dr. Lerner's web
site at
http://www.cfsviraltreatment.com including a video
presentation from 2007 -
click here. Dr Lerner's experience spans many
years and he has published extensively on links to
cardiomyopathy in ME/CFS patients (see
here) and has researched for many years on the use of
antivirals for ME/CFS -
which was validated by research performed by Dr Jose Montoya
at Stanford last year.
Dr. Leonard Jason has been a prolific researcher in the
definition and diagnosis of ME/CFS and has produced research
which
demonstrates that subgrouping is possible using laboratory
tests that are readily available and can easily be ordered
by primary care physicians. Dr Jason was scheduled to speak
at our 2007 conference
(and contributed an article in our 2007 conference Journal
of IiME -
see here)
so we are particularly pleased to welcome him this year. Dr
Jason's home page is at
http://condor.depaul.edu/~ljason and contains details of
his extensive research.
Dr. Irving Spurr has been involved in treating ME patients
for over thirty years in the UK. The respected John Richardson Research Group based
near Newcastle
(of which Dr. Spurr is chairman)
is famous for its
work (see
references in this article).
Dr Julia Newton’s work on autonomic dysfunction will
also show another grouping in ME/CFS. Her interest is in
understanding the pathogenesis of fatigue - more details of
Dr. Newton can be seen at the Newcastle University
web site here.
Dr. Jonathan Kerr’s recent published research shows 7
distinct sub groups of ME/CFS (Seven genomic subtypes
of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis
(CFS/ME): a detailed analysis of gene networks and clinical
phenotypes
-
see here). Dr. Kerr's work is funded by CFS Research
Foundation -
click here.
Last year Invest in ME invited Annette Whittemore to come to
London to describe the new Whittemore-Peterson institute
being created in Nevada. Dr Dan Peterson also participated
and the DVD from the conference shows the ambitious plans for the WP Institute as it moves to treating
ME/CFS. We are honoured to welcome the WPI’s Research
Director Dr. Judy Mikovits to talk about the WPI's future
research.
Dr Mikovits herself has co-authored over 40 peer reviewed
publications that address fundamental issues of viral
pathogenesis, haematopoiesis and cytokine biology. For more
information on the WPI see our
earlier article here.
ME/CFS Support Groups
Once
again we would ask all ME/CFS support groups to send as many
delegates to the conference as possible and to try to get as
many local healthcare staff to come along. We hope to
announce CPD accreditation for the conference soon.
We would
also like to ask support groups and friends of IiME to take
our flyers/posters to local GPs/consultants or place in
hospital waiting rooms so that more people can become aware
of this important conference. IiME will send out
flyers/posters or other details to any groups who wish to
include them with newsletters to members. Contact us if you
would like us to send you anything.
Our
discounted tickets, including the
Sponsor a GP scheme, are in force until 15th March.
More
details
available here and our conference flyer is available to
be downloaded
from here. We also have an a4-poster
available here.
So the IiME conference on 23rd May, in a venue
which is the best we have had, will be a showcase of
important science and research into ME/CFS.
Invest in ME are extremely excited about this conference and
feel this will provide valuable impetus to progress
knowledge and awareness of the biomedical origins of this
illness.
The quality of the speakers and the extensive data associated with scientific research from
our presenters is a powerful and valid statement to the
government, Department of Health, NICE and
the MRC that a national strategy of biomedical research into
ME/CFS, performed by biologists, micro-biologists,
neurologists, endocrinologists, gastroenterologists and
others will offer the best hope of treatments and cure being
found.
We welcome delegates from across the world to participate
again this year. We hope as many as possible will be able to
join us.
'Lost Voices' - The ME Book Project
Invest in ME are pleased to announce a new project which we hope
will highlight the plight of people with ME and their families
and give them a possibility of being heard.
The name ‘Lost
Voices’
refers both to the fact that people who are severely ill with ME
are generally not in a position to make themselves heard, and
also to the way that the prejudiced denial of ME - as an
‘aberrant belief’ rather than a devastating physical illness
–has meant that often others are incapable of actually hearing
and seeing what is being said and shown - our voices drop into a
void.
The book will probably be around A4 landscape size with a
laminated card cover and will be largely in colour.
A travelling exhibition will be put together, of pages and work
from the book, to be shown primarily in hospitals. Art has the
power to move people, and combined with documentation may bring
the situation more vividly to life.
The project is particularly intended for people affected by
severe ME- whether as sufferers, carers or families.
The aims of the book and exhibition are –
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To provide an opportunity for people who are usually
invisible and unheard to speak for
themselves, so that their
situation can be seen and understood more clearly.
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To show evidence of the devastating impact this physical
disease has on individuals and their carers and families.
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To bring to more public notice the plight of ME sufferers.
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To help change a widespread lack of comprehension based on
general misinformation, vague definitions, guessed numbers
and statistics, to the development of empathy and concern
for those who are so ill.
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To educate the medical profession, the public and others
such as wider family.
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To encourage a sense of community among ME sufferers and
those supporting them.
It will contain pages consisting of a mixture of writing and
largely photographic img/IIMER images. The writing and photos will be
provided by carers, families and , as far as possible, people
with ME themselves.
There will be individual pages and double
spreads or groups of pages representing different families,
showing the impact of the illness on all family members and
sufferers and carers.
The photographic material will have
various purposes. It may be documentary; may contrast or
juxtapose img/IIMER images to make a stronger point: or photos may be
used by the artists, to respond to, work with and combine in a
creative, poetic and evocative way- to make img/IIMER images with a more
powerful emotional resonance.
We also wish to incorporate a short section of informative
material on ME written by experts.
The ME Book Project -
Lost Voices
will be run by Natalie Boulton whose idea this is.
We hope to show progress and examples from the ME Book Project
at the IiME International ME/CFS Conference in London on
23rd May.
IiME will be announcing more details of the project in due
course. To enquire further and/or to participate in the project
please contact IiME -
click here.
IiME and MHRA
Invest in ME has been invited to join
the MHRA (Medicines and Healthcare Products Regulatory
Agency) - and we have accepted.
The MHRA is the
government agency responsible for ensuring that
medicines and medical devices (or equipment) work, and
are acceptably safe.
IiME will supply its supporters with
information from the MHRA
when that body needs to alert as many appropriate people, as
quickly as possible, regarding crucial MHRA safety
information, or new facts about the effects on patients of
medicines/devices.
Parliamentary APPG for ME/CFS
The next meeting of the All Party
Parliamentary Group on ME/CFS is scheduled to meet on
22nd January in Westminster. Present at the APPG meeting
will be Mrs Ann Keen MP who has responsibility for
ME/CFS.
Invest in ME have been trying to engage the
Secretary of State for Health - Mr Alan Johnson - and
Mrs Keen in order to persuade them of the need for a
national strategy for biomedical research into ME/CFS.
We have invited Mrs. Keen to our London conference in
May. We have also several friends of IiME who have
similarly tried to make contact - all to little avail at
the moment.
So IiME have tabled seven questions for Mr.
Des Turner - chairman of the APPG - to put to Mrs
Keen at the next APPG meeting. Our letter has been
posted with recorded delivery in time for the APPG
meeting.
These questions can be seen in our letter -
click here.
We hope that our questions are put
before the minister and that the minister will be able
to answer these points.
Essential investigations for people
with ME/CFS?
We are grateful to Margaret Williams for
sending an article to Invest in ME regarding
inflammation in ME/CFS.
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As NICE is now in the process of contacting
selected people asking for their input on
the advisability of it producing guidance on
the use of Ampligen in “CFS/ME”, might NICE
also be persuaded to seek the input of
experienced vascular biologists on the
advisability of it recommending specific
testing for inflammation in ME/CFS? |
The full article may be
read here.
Best wishes to all
Invest in ME
Contacts:
Inquiries to Invest in ME -
info@investinme.org
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