After our international conference in May we have been
working on the DVD of the conference and on other
possible projects.
We would like to congratulate ME Research UK on
the success of their conference in Edinburgh and in joining
with us to mark ME Awareness Month 2007 with two
powerful events which we hope will progress the move
toward ME being better understood by the public, the
media and, especially, by healthcare professionals.
The conferences emphasised how much good research had
been performed, was underway and was ready to be
performed, provided funding was available to make use of
the new technology. The research has moved on
considerably in the past five years and we need to make
ME a mainstream illness to attract new researchers.
The challenge now is to harness the momentum from the
conferences and put it to good use. We are glad to see
some collaborative opportunities arising from the meetings which took
place at the conference and hope that these will develop
into real action to benefit and
progress the perception and treatment of ME.
The replacement of the Secretary for
State for Health in the UK may provide
an opportunity for change. Invest in
ME has written to the new minister
asking for a meeting to discuss ME.
One feeling we all have is that
anything is possible and we have to take
whatever possibilities we have to force
through change.
Thank You
Firstly we'd like to say thanks
to everyone for all of the letters/emails of support and
the donations made to us in the last
few months. As with any voluntary
organisation these mean a great deal
to us.
Also thanks to Wendy P. in
Surrey and Frances
O'Brien in Naas, Ireland
who between them raised
nearly £650 during their
ME Awareness Month Have
a Cuppa for ME days in
May. Sales of blue
ribbons by the Irish
ME/CFS Support Group
raised over £6000.
Also worth mentioning
is that Robert Saunders
is donating all
royalties to biomedical
research into ME from a
book he is publishing .
Although
the official publication
date is not until 2
November 2007, it is
available on at
this address.
Statistics on IB and DLA
One of Dr. Vance Spence's comments at
the IiME London conference related to numbers of pwme and how
this could be extrapolated from the
figures on those claiming Incapacity
Benefit and Disabled Living
Allowance. Janice and Bill Kent
promised to research this and they have provided
details -
see here.
NICE Health Select Committee
Investigation
Invest in ME submitted our evidence
in the investigation of NICE by the
UK Parliament's Health Select Committee in March.
The submitted article is
available here.
Whilst on the subject of MPs we
are glad to see that three
Hampshire MPs are supporting the
recent 25% Group campaign to
divert scarce funding from
psychological and psychiatric
research to biomedical research.
The campaign is fully supported
by Invest in ME.
Norway - the
Breakthrough
IiME were happy to
highlight the amazing work of the Norwegian ME
Association in getting the government to agree to fund
biomedical research into ME and set up competence
centres to provide proper treatment.
The focus is still
on Norway as it has been announced that the Norwegian ME
Association will host the next board meeting of the
International Association for CFS/ME (IACFS) in Oslo in
October. As the IACFS members will be in Oslo for this
meeting they have also agreed to give a conference for
patients and for professionals. The objectives of IACFS
are to progress, stimulate and coordinate development of
ideas related to research into ME/CFS and it is perhaps
a sign of the importance of the work
by the Norwegian ME Association that
this is being held in Norway.
Plans for the
conference are still being developed
and we hope to provide more detail
later.
Registration for Norwegian ME
Association members and relatives
will begin at 12.00 Thursday 18
October and that conference day ends at
17.00. The conference for healthcare
staff and professional groups
working with ME groups will be on
Friday 19th October from 08.00 -
16.00.
Details for
registration are
here.
and
the Dominoes begin to move...
As predicted by
Invest in ME the breakthrough in
Norway is beginning to have its
effects. In neighbouring Sweden a
similar "interpellation"
(a method used to get the government
to justify their policy on a
particular issue) has been
instigated to press the Swedish
government on its policy on ME.
In the Swedish
parliament (Sveriges
Riksdag) a debate was
held regarding the
situation of patients
with ME and the security
of their rights within
the healthcare system.
Göran Hägglund answered
the ME-interpellation
that they had set up a
investigation concerning
ME on 15 March 2007. He
said that SBU (an
authority that
critically examines
methods used in
healthcare to diagnose
and treat illnesses -
similar to what the UK
NICE should be?)
had been given the task
to research the
literature in order to
give advice on which
diagnostic criteria
should be used and which
treatment is
recommended.
We
hope to report news of this at a
later date.
The International ME/CFS
Conference DVD 
The International ME/CFS
Conference 2007 is now being
produced for delivery. Our
apologies for the delay. We
hope this will be another
aid for educating people
about ME. The price is £15
for UK delivery, £16 for
European delivery and £17
for USA, Canada and
Australia.
To order the 2007 Conference DVD
click
here.
The 2006 Conference DVD is
also still available as an
excellent educational aid.
Use the conference
review links below to
revisit review pages.
Petitions
On the conference DVD one
can listen to Dr. Sarah
Myhill describe her
treatment programme for
people with ME. Dr. Myhill
is having to defend herself
to the General Medical
Council, despite no
complaints from any
patients.
The Sunderland and South
Tyneside ME/CFS Support
Group have set up a petition
of support for Dr. Myhill
and this is still open for
new signatories until the
end of August. If you wish
to add your support for Dr.
Myhill please click
here.
ME Stories
|
"I
haven't
seen a
doctor
in
years.
It
doesn't
seem
worth
it,
somehow,
as they
have no
answers
and,
besides,
I can't
stay
upright
long
enough
to make
it to
the
surgery.
I become
light
headed
very
quickly
now and
have to
lie down
before I
fall
down:
something
else
that
used to
happen
on
exertion
and
which
now
happens
all the
time." |
|
Thanks to Christine for
submitting this. Read more
of Christine's story
here.
Read other ME stories
here.
The Journal of IiME
We hope to publish our second issue of the Journal
of IiME in September. Thanks to everyone for the
comments returned regarding the first issue.
The Journal Issue 1 is currently
available here.
...and the Quotable Quotes Booklet
is still available.
Compiled by Margaret Williams
the
QUOTABLE QUOTES ABOUT ME/CFS booklet costs £3.50 plus
postage and packaging and is available
here. This is an excellent source of
information to provide to your MP, GP or
paediatrician.
Canadian Guidelines
Invest in ME have been
given the rights to
distribute the Canadian
Consensus Guidelines in
the UK. We have already
made an order for an
initial batch. If you or
your group would like to
order copies please
email us at
this address.
ME Clinics
At the London conference there was
animated discussion on the role and usefulness of
the CNCC clinics. IiME's position on these clinics
is that, if they provide nothing but psychiatric
paradigms posing as treatments for a neurological
illness then they ought to be closed and the money
transferred to biomedical research. Having a psychiatrist as
chair of the CNCC can only cast more doubt on the
role and strategy behind them.
But if
these are not the
clinics that are
required then what is it
we need from them?
As part
of a move to establish
basic protocols for ME
we have added a document
to the web site produced
by Linda
and Greg Crowhurst who have
made a start on defining
what we need and what we
don't need from ME
Clinics. We publish
their document -
click here - as a
starting point for a
consensus on what should
be provided by clinics
funded by the government
and whose purpose is to
treat ME patients.
Any
comments you have to
expand, refine or
supplement this will be
welcome. Send your
comments to
this address.
link to the home page. Read more on
