January
2007
In December 2005 IiME published its first newsletter. A year later, at the
time of year where people traditionally look forward to renewal and a positive
change in their future, so it is with people with ME - in a year which will be
crucial for the future for ME sufferers.
Our topics for the first newsletter of a year ago included - the Gibson
Inquiry; the start of the Have a Cuppa for ME fundraising events; news of the
first International ME Conference in London; an attempt to create more ME
awareness possibilities by replacing a week of campaigning in May with ME
Awareness MONTH; the first Meridian ME story being publicised and an article
criticising the attempt by some to change the name of ME.
A number of challenges will present themselves this year - the follow-on from
the report from the Gibson Inquiry will determine what changes in strategy are
implemented by the Medical Research Council following the call to treat ME as
seriously as cancer or heart disease. Despite statements in the
report with which some take issue it still
represents an opportunity for change which needs to be taken. There is no queue
of politicians in the wings who are eager to take up our cause.
The attitude of NICE will be on public display when we see how they respond
to the overwhelming criticism of the
Draft Guidelines for CFS/ME. The planned
publication of these guidelines in April without any changes will be fought by
most within the ME community. If there is one element which should unite the ME
community it is the opposition to these proposed NICE guidelines and the IiME
and ME Research UK Conferences in May will allow platforms to publicise
everyone's concerns should NICE fail to react.
2007 - what has happened since the Chief Medical Officer's Working Group
report of 2002 or since the Medical Research Council's briefing strategy of
2003. What is the status of biomedical research into ME and, indeed, the status
of the ME community?
Despite everything we remain positive that change will come and that ME will
eventually get the correct funding, attention and treatment which other
mainstream illnesses receive by healthcare services, the media and the public.
Invest in ME would like to wish a Happy New year to all our
friends.
So let us look at the current status of several
areas relating to ME.
UK Department of
Health
Anyone who has used our
Letter to MP model letter and
received an answer from the DoH will be familiar with the apathy
shown by successive DoH ministers. By distributing the same
template to ME patients (via their MPs) and then referring all
responsibility for biomedical research to the Medical Research
Council they have shown little interest in tackling this problem
or in understanding the true nature of the illness.
Secretary of State
Patricia Hewitt has been invited to the ME/CFS Conference in May
2007. This offer has been rejected by her department.
Status of CMO Working Group
The report to the CMO from the CFS/ME Working Group in 2002
contained the following in its foreword -
|
Unsurprisingly, when so little is known about the
cause of CFS/ME, there are concerns from patients and their
representatives, and from a broad range of clinicians, over the way
the illness is managed. These concerns on management apply to the
NHS, to other government Departments and to the private sector. In
particular, patients and health professionals involved in the care
of CFS/ME find much disbelief about the nature of the illness and of
its impact. Perhaps as a result, in many areas of the country there
appears to be a lack of appropriate health care facilities. |
In the four intervening years the amount of progress achieved has been less
than desirable. There still exists this "disbelief"
from the healthcare services which the CMO Working group's recommendations were
meant to change. So on to the CMO Working Groups' recommendations. Have they
been achieved? In the five areas of the section on recommendations we comment on
the status - see
here.
Sir Liam Donaldson has been invited to the ME/CFS Conference in May 2007.
This offer has twice been rejected.
Status of Medical
Research Council
Since the Medical Research Council’s CFS/ME Research
Advisory Group from 2003 was commissioned and followed on from the CMO's
Working Group of 2002.
We examine the status since this report was issued (see
here) and again find that another government health institution has
patently failed to deliver on its publicly stated intentions.
Seven years ago one had these stories in the BBC Panorama programme -
http://news.bbc.co.uk/1/hi/programmes/panorama/archive/506549.stm
So in 2003 one could be forgiven for thinking that the MRC would effect
changes to avoid this type of event occurring.
Yet in 2006 the story of
Sophia Mirza unfolded - a tragedy allowed to
occur as a result of the collective policies of governments, Department of
Health, the CMO and MRC and others -
a
tragedy which should not have occurred.
The status of the MRC response to ME has been poor. Sir Colin Blakemore has
been invited to the ME/CFS Conference in May 2007. We are hopeful he will be
present and we can start to make progress using the Gibson Inquiry as a
springboard for a new initiative.
Status of Research into ME
Since the MRC Briefing Strategy at least 14 proposals have been rejected by
the MRC yet the MRC is currently funding a number of expensive projects - such
as the psychiatric trials PACE (£2,076,363) and FINE (£824,129) (see PACE and
FINE trials), a study to assess ethnic
variations of the prevalence of a CFS-like illness, associations with potential
risk factors, and coping behaviours (£162,145). A total investment of
£3,180,900. Yet the MRC policies bear little resemblance to the recommendations
from their briefing document. Why is nothing spent on biomedical research?
Status of ME Community
If we feel criticism is validly directed at the organisations which are
supposedly there to ensure the health of citizens then we also have to look
within ourselves and ask if we could do better. For an illness affecting so many
citizens across the world we should be able to mount a more effective and
coordinated campaign and it is evident that the ME community needs to work
together and organise funding for biomedical research to supplement whatever
becomes available from the government. There are many groups and individuals
doing excellent work in the UK and abroad who raise awareness of ME and perform
fund-raising events for ME. We need to coordinate all of this and get more
people to help us.
IiME's aims are to get adequate funding for biomedical research into ME,
proper diagnosis for ME (including adoption by health departments of correct
diagnostic
guidelines), a co-ordinated long term plan for
biomedical research and finally treatment and cure for ME. This is what we
believe needs to be delivered and we welcome the chance to work with other
groups. This is why IiME and ME Research UK are working closely together on
many issues - amongst them ME Awareness Month.
IiME would like see as many ME support groups as possible to be represented
at the International ME Conference on 1st May 2007 - especially at Day 1 where
we can work together to create a new spirit of cooperation.
We are hoping that a number of our UK and international contacts will be
present so that we can work together on creation of an international alliance of
people dedicated to campaigning for positive changes for people with ME and
their carers. Already we have possible user groups attending from Ireland,
Norway, Sweden, Germany and USA as well as from within the UK. Last year eight
countries were represented at the conference and the DVD of the conference sold
in 16 countries. We hope this year we can improve on that.
The agenda for Day 1 will involves subjects which we hope ME Support groups
can work together on - ME Protocols, plans for a National ME Blood & Tissue
Bank, International links and cooperation, experiences from other countries in
their opposition to NICE, and linking together of campaigns for raising of
awareness of ME and funding of biomedical research. If your group wishes to have
a topic discussed then please contact us.
ME Awareness Month should be a time that all ME
Support groups can work together and the conference provides this
opportunity - and not just in the UK but across the world.
IiME Campaign - CMO and ME
As a Notifiable Illness
After writing several times to the Chief Medical officer
(see
here) IiME has now been given an opportunity to meet the
Deputy CMO. We have an appointment at the end of the month where we will press
our argument that ME needs to be made a notifiable illness within schools.
We are very pleased that Professor Malcolm Hooper has also agreed to attend
this meeting as we attempt to get some agreement on other issues.
It is a pity that pwme and their carers have to constantly battle to be
heard. However, we won't give up and we shall report on our meeting in a later
newsletter.
The Gibson Inquiry
IiME have submitted our response to the Group on Scientific research into
Myalgic Encephalomyelitis to Dr. Ian Gibson's office (see
here). We feel it needs to be used to support an effort to effect the
changes recommended by the Inquiry.
Just at the time this newsletter was about to be distributed then news came
of Dr. Gibson writing to the CMO, MRC, Minister for Work, the Treasury and to
the Academy of Sciences (see
here).
We are also pleased to have seen the correspondence from Countess Mar who has
written to Professor Richard Baker - the chair of the NICE Draft Guidelines on
CFS/ME - in forthright terms. An extract here -
|
"I doubt that
you can have avoided being aware of the tide of opposition to the
Draft Guidelines from members of the ME community. I wonder whether
you can comprehend just how hurt and insulted they feel? For years
they have been denigrated and denied medical treatment and benefits
that the rest of our population expect when they fall ill. They
have pinned their hopes on the integrity of NICE, hoping that, at
last, someone with influence will listen to them and recommend
decent medical, financial and social care provision. Instead they
find that all the old prejudices are recycled; their predicament is
watered down by the inclusion of people who do not suffer the same
illness: there is still an insistence that, like rats on a
treadmill, they can be 'trained' to respond as certain professionals
who, for some strange reason have been accorded undue deference,
think they should. That age-old instruction to doctors to: 'Listen
to the patient: they will probably tell you the diagnosis.' seems to
have been forgotten in this welter of almost incomprehensible
paperwork." |
So there is support. Now would be a god time for everyone to contact their
MPs to gain further support.
Both Dr. Gibson and Countess Mar will be in at the ME Conference in May.
ME AWARENESS MONTH MAY 2007
Invest in ME and ME Research UK are working together to promote
ME Awareness Month 2007. Our Events calendar is awaiting news of any events
which are planned. Already friends of IiME are planning events during May and we
hope to provide more news of these events as soon as they are finalised.
The IiME newsletter is reaching every corner of
the UK and over twenty countries - so please let us know of any events
planned across the world. Our events diary will be updated accordingly - see
here.
ME/CFS Conference
There has been a slight change to our agenda
for the May conference.
Unfortunately Dr. Leonard Jason has had to cancel his
participation in the conference due to other commitments but has
promised to work with us and we hope he will be present at the 2008
conference.
However, we are pleased to welcome two new presenters to our line
up - Dr. Nigel Speight and Professor Martin Pall will be joining the
event.
Dr Speight is well known in the UK and abroad and will be
covering ME and paediatrics.
Professor Pall works in the School
of Molecular Biosciences at Washington State University USA. He also
has a book being published at the time of the conference
(Explaining
"Unexplained Illnesses": Disease Paradigm for Chronic Fatigue
Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, Posttraumatic
Stress Disorder, Gulf War Syndrome and Others).
All of the presenters at the
conference are well-known throughout the ME community, and beyond.
We have updated our conference agenda to reflect the changes.
We are also still getting requests to speak at the conference so the
line-up may be amended as we refine the agendas.
We hope also to start a delegates' page so that people attending
the conference can tell us about themselves and inform fellow
delegates prior to the event.
Use the conference details page to keep up to date with
the latest information or use the
IiME site map feature to browse the
IiME site, or the web for more.
More
details
here.
Sponsor a Medic
A further appeal to ME Support groups to help get
more more GPs, paediatricians and other healthcare professionals to
the conference in May. This applies also to non-UK groups. At last
year's conference we had several physicians in attendance from
outside UK.
IiME are offering a discounted rate to healthcare professionals
who are being sponsored by an ME support group or charity - one day
for £75 or both days for £150. And with CPD accreditation pending
for the conference the conference can be added to your GP's training
quota.
More details are
here and, to facilitate this, we
shall soon have an information pack which may be downloaded and
distributed to your local PCT, GP surgery or hospital.
Sophia's Story - Your Responses
As
people may know Sophia's mother, Criona, has instigated proceedings with the
General Medical Council against 6 doctors involved with Sophia's case.
The GMC will not make a decision until the end of March as to whether there
is a case to answer or not.
We are still getting emails from friends
commenting on Sophia's story - see
here. Please feel free to add your comments -
they mean a lot to Criona and her family.
We have also added the Marshall/Williams/Hooper
article
What is ME? What is
CFS? as a page on our
info library section - see
here.
ME
Story
We include a story from Malta this month....
At last year's ME Conference Byron Hyde mentioned the
prevalence of Thyroid malignancies in pwme. Dr. Hyde is one of
the handful of world physicians with such a long experience of
examining only ME, CFS and fibromyalgia patients.
Dr. Hyde is one of the few physicians who have been doing a
total technological body assessment on ME and CFS patients. This
has revealed an incredible amount of information on the
differences between ME and CFS. Without extensive examination
Dr. Hyde feels pwme will never know why they are ill and one
will never get to the bottom of this group of illnesses. Dr.
Hyde writes "One of the papers I wanted to
give (at the IACFS conference) demonstrated that cancer of the
thyroid was found in 1-15 cases per 100,000 in the general
population and in 6,000 cases per 100,000 in ME patients,
and in all of the cases there was severe Central Nervous System
changes involving not only the cortex but also the subcortical
structures. The cancer in all cases developed after the ME and
the ME was not caused by the cancer".
Dr. Hyde will be able to elaborate more at the ME Conference
in May.
From Denmark we received this from Lajla Mark -
we are happy to pass on this link i
f
you would like more information of the history of ME -
"These days, when the
terms CFS and ME is a rather hot topic, I would like to draw your attention
to this newly updated essay on ME and ME/CFS History explaining and
documenting the development of ME into CFS and how the current standing is
by both WHO and CDC."
Lajla's document can be found at
here.
...and
finally a New Year Calendar
Thanks to Regina Closs and Hans-Michael Sobetzko
for providing this calendar which may be copied from the web site (please see
the comments in the calendar itself).
Download the calendar
here.
Contacts:
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