Welcome to a
Invest in ME Newsletter
for April 2007.
Are the ME Dominoes
Recent news from Norway gives hope that changes are afoot in the way myalgic
encephalomyelitis is being perceived and treated.
After much campaigning the results of the Norwegian ME-forening (the
Norwegian ME Association - the main support group for people with ME in Norway)
is bearing rewards.
On Thursday 29th March Stortinget (Norwegian Parliament) completed
a 1 hour and 10 min debate about ME and what should be done about the
has led to the Norwegian Minister for Health and Care Services announcing
publicly a long
list of proposals which she stated will be put into action to ensure that
ME-patients get proper care. The minister, Sylvia Brustad, has now engaged
herself personally in the case of ME. The health minister is now
on record as stating that more knowledge, support, research and funding is
required to provide an adequate approach to this illness which is estimated to
affect 10,000 Norwegians.
"This is an illness
which is difficult to diagnose and treat, and it is an illness to which health
services have, up til now, given too little attention. This the government will
change, and we will follow this up in the budget process" said minister Brustad.
This is significant as it could have a snowball effect on other countries
Once one European country recognises the true biological nature of myalgic
encephalomyelitis and then begins to change its infrastructure (healthcare
provision, education, research, funding priorities and public perception) then
it will be difficult for other European countries to continue to bow to
long-established vested interests in starving biomedical researchers of funding.
Other European Medical Research Councils, Medical Officers and Departments of
Health will find it far more difficult to maintain an apathetic or biased
Once a model is established for funding proper scientific analysis, using
correct guidelines and accepting the need to listen to patients' own experiences
then this will have an effect on other countries.
Perhaps the ME dominoes will begin to fall.
Some highlights from the Inquiry report -
Reinforce the production and distribution of
relevant and up to date information of the illness and of
meaningful management and care guidelines for social, health,
school and NAV (Work and Welfare) staff.
Reinforce patient organisations' possibilities
for distribution of information to patients, relatives and
Municipalities must offer investigative,
management, care and rehabilitation services (institution- or
home- based) which take into account the individual needs of the
patient with CFS/ME and their relatives. These services must be
formulated in multi-disciplinary, individual care plan and must
take into account co morbidities, general condition, prevent
complications and address educational and professional
rehabilitation together with respite care for family members.
Patients with CFS/ME have a need for essential
healthcare, if necessary in specialist health services. The
health service must ensure there is sufficient investigative,
management and rehabilitation services in all health regions.
There must be a focus on the way the illness
presents itself in individuals so that symptom-management,
general condition, prevention of complications and individual
set-up become the central core of treatment.
Teaching hospitals and rehabilitation institutes
can be actual arenas for development of specialist services.
The municipalities and health services must clarify
responsibility and required roles and responsibilities in a
continuing management dialogue, e.g. guidelines for habilitation
Strengthen research within general medicine,
biomedicine, physical health and health service research. The
research must be carried out both against underlying illness
mechanism, triggering factors, and against development of safe
and effective diagnostic methods, curative and alleviative
management, and care and rehabilitation.
Establish a national competency network for
CFS/ME. The network shall ensure a national knowledgebase and
publicising of the condition. This becomes central to the issue
of CFS/ME becoming recognised as a clinical entity.
It is important that there is close contact
within clinical activity, such as also analysis, management and
research is carried out within disciplines in the network. The
network will be set up to follow international professional
development, together with contributing to establishing quality
control and establishment of national diagnostic criteria,
professional advice and models for good individual patient
courses. The network must help to establish a quality benchmark
Projects concerning children and young people
and the most severely affected must have special priority. A
time-limited project for research, knowledgebase building and
knowledge distribution about children and young people with
CFS/ME must be established in a professional environment with
broad clinical and research-oriented experience. The objective
for the project must be to raise expertise on all levels in the
health service so that result of the project can be implemented
by all regional health services.
Some of these recommendations
are similar to those of the Gibson Inquiry -
calls for this illness to
be given due recognition
calls for funding for
establishment of a national
calls for research into ME
to be made a priority
As we stated with the Gibson
Inquiry -where we felt it is a relief that at last an inquiry is acknowledging
that ME is a severe, incapacitating, illness and that those who suffer from it,
as well as their carers and families, may have their lives completely ruined -
we now see a similar stance being taken by a European government.
We believe that we must move
forward and ensure that people are correctly diagnosed with this illness and
that doctors and scientists treat patients knowing and accepting that they have
a genuine and serious illness. The positive points from the Gibson inquiry now
need support to capitalise on the events occurring in Norway and the challenge
now will be to harness the momentum generated by events in Norway to proceed
with proper funding for biomedical research and a will to find a cure for this
illness. A pan-European movement needs to be built and we hope to begin that at
the International ME/CFS conference in May.
This is an opportunity to benefit ME patients and find a
cure for this illness.
Invest in ME are hoping to arrange for the main
protagonists in this story to come to the International ME/CFS conference in
London in May. Already the president of the Norwegian ME Association, Ellen Piro,
will be speaking at the conference on 1st May and several other members of the
Norwegian group will be attending also. Ellen has also secured the attendance of
other Norwegian medical and research staff at the conference including Professor
Harald Nyland, who was knighted in Norway for his work in relation to MS.
"Takk til i alle i Norge for
å vise den riktige veien" fra