By Charlotte Myhrvold and Gunnar Holthe
As published on on 13 March 2006
Norwegian Institute of Public Health Looks into ME Case
Invest in ME has been given permission to publish this story from the Norwegian TV programme Puls.
This story relates to the Norwegian National Institute of Public Health's decision to study the reported link between vaccinations against meningitis and ME. It follows determined work by Puls reporters and by the Norwegian ME Association. Invest in ME have translated the article as it appeared on the Puls website.
Now the authorities will investigate those members of the public who received vaccination against meningitis in the 1980s to determine if they have had a greater risk for developing myalgic encephalomyelitis (ME).
A few weeks ago Puls reported on more young people with ME who
believed they had developed the illness after receiving the
meningitis vaccination when they were at school.
Many Have Come Forward
After this the (Norwegian) ME Association has had a lot to do. They have received a stream of references from people who believe that they also have developed ME after having been similarly vaccinated. From the initial 19 known cases a few weeks back this has now risen to 70 people who have been diagnosed with ME who have also had the vaccination. They have also noted an additional 20 people who have been given the same vaccination and have developed similar symptoms.
"This
has been an unbelievable response and we have now
received far more cases than we expected. Just
yesterday we received two more"
said Ola Didrik Saugstad
who himself is related to someone with ME and is one
of the contact people in the (Norwegian) ME
Association.
National Institute of Public Health Research
He and others in the (Norwegian)
ME Association had
met with the Norwegian National Institute of Public
Health in recent weeks and
agreement was reached to set up a research study to
find out if there is a greater than average
occurrence of ME amongst those receiving the vaccine
during the 80s.
Until now the National Institute
of Public Health had not
wished to perform research into this, but now they
have begun to look into the case. Besides performing
this research study they will also perform a
separate evaluation of ME patients.
Ola Didrik Saugstad and the (Norwegian) ME Association have had a large feedback from people who believe that they also have developed ME after participation in the vaccine trials Photo: NRK, Silje Østmoe
Advice on Compensation Claims
The results of the study will be available in a year's time. In the meantime the National Institute of Public Health is advising people with ME who believe they have developed the illness as a consequence of the vaccination to put forward a claim for compensation through the Norwegian Patient Injury Compensation Board.
"It means a
great deal for people with ME and their relatives
that the National Institute of Public health will now perform this new
investigation. We have received heart-rending
stories from parents who haven't known what has a
happened with their children. If this is the cause
then it is very important to make this known",
says Saugstad.
Patient Injury Compensation
Those patients who believe they have developed ME
as a result of taking the meningitis vaccine may seek compensation
from the Norwegian Patient Injury Compensations Board (NPE). NPE
will evaluate if there is a probable link between the
vaccine trial and the illness and would eventually pay compensation,
says the home page of the NPE.
Norwegian Patient
Injury Compensations Board,
Norwegian Institute of Public Health and the
Norwegian ME
Association agreed in a meeting on 2nd March to work together to
inform those who took part in the meningococcal vaccine trials which
were carried out during the period 1987-1994 whether they could have
developed ME due to the vaccine. The plan consists of both a
research study and individual evaluation of ME patients.
"We
will have a dialogue both with the (Norwegian) ME
Association and the
National Institute of Public Health in the handling of these
cases
"
says
assistant director of NPE - Rolv Gunnar
Jørstad - in a press release from the National Institute of Public
Health.
He stresses that NPE will be ensuring that the handling of these cases is streamlined and calculates that the cases could be cleared during the course of one year.
Invest in ME are grateful for permission from for permission to reproduce the above article.