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My background is from cancer care where i am a cancer specialist.
I've been head of the cancer department for almost 20 years at Haukeland University Hospital in Bergen, Norway
and I am also a researcher. I am working with radiotherapy and medical oncology
- cancer treatment
It is a interesting area to work in, and it is also very rewarding
It was an coincidence that Øystein and I got in to the field of ME in 2007
Personally I've had some experience with ME, as my sister-in-law was diagnosed with the disease as an adult
At the time I didn't know much about it
and I couldn't offer her any help
but the story about Fluge's patient with lymphoma cancer
the patient had been diagnosed with M.E for years
received chemotherapy and experienced a unexpected rapid improvement in symptoms
and the reasoning behind our theory to try Rituximab is well known
after 7 years of intensive working
and even though you think it has been a very long time - we have put a lot of work into the field
On Friday, 40 people met at in Bergen for the start-up meeting for the national Rituximab study
40 people are needed to fulfill GCP (Good Clinic Practice)
a medical study at this level is very demanding
it is not strange that pharmaceutical companies keep an armada of people to deal with studies like this one
If everything goes to according to our plan
the study been to the Norwegian Regional Comitee for Medical and Health Ethics
We expect to get an approval there.
The Norwegian Medicines Agency is slower
We expect to begin the study in late August/September
Even though it has been time consuming - it is highly neccessary
get a study that is solid so that medicine agencies (FDA) around the globe accepts it when they come for inspection
unfortunate we have been required to include a control group
they will get placebo (salt water) instead of Rituximab
this is due to the fact that the severity of ME fluctuates
and some also experiences spontaneous improvement in symptoms
that is why it is crucial to have a control group in the study
even though it is eventful to become a part of the study - and then you receive something that is not working
during the study we will do a lot of blood samples
we have a bio bank
located in Bergen
We have the option to correlate test results during the study
with each patients different clinical picture
we have a lot of different information regarding each patient
that could be correlated to the responders or non responders of the drug
It was an eye opener for Fluge and I to get into the field of ME
due to the fact that the mechanisms of why patients become sick with ME and why the disease stays in the body is unknown
the field of ME is influenced by several groups that think they have the answer to the disease
and all the parties proclaims of course the right to have an opinion about M.E
It is sad to get in to the field of ME in contrary to the cancer area where you go to international conferances
where there are thousands attending.
ME: a field where there are almost no MD's interested
few researchers engaged in studies - at least until a few years ago
Health authorities has shown a lack of interest in the field
There are little funding that can contribute to further research
if we want to speed up research on this area - we need to know more about the molecular mechanisms
that both trigger and maintain the disease
that is going to be absolutely necessary for the research and so that the patients
can get the recognition that they so deeply deserve
it is not true that we don't know anything about the physiological aspects that contribute to the symptoms
We have heard one example now from Katrina Lien, MD (bicycle test)
we know that they have lower blood volume than other persons
the blood flow in the muscles and the brain are different and not well functioning
we have data on that from our past studies
there are also studies that have appeared during the years that states the same from the West and also Japan
the immune system is in disorder
the problem with the disorder in the immune system is that it differs from patient to patient
that is why we can't use that diagnostically yet
we can see that there is something wrong
this contributes to an underlying hangup that may be the cause of the symptoms for the patient
we need to achieve more knowledge of the underlying mechanisms if we want to get the research forward
I know that a lot have been sick for years
seen their youth go by from the coach
others being disabled for decades
there are a lot of patients that have a legitimate need for help
unfortunately it is impossible in a day to get to a optimal solutions
when society understands that patients can be saved
get them back to a life with a good quality of life - from social benefits to paid work
where they can be productive - also economically for the society
first then society will finally provide more funding which will have an impact
Eventually it will become necessary to point out a medical speciality so that one group of MD's have the responsibility for the patients
it is difficult now, but when we know the molecular mechanisms we have to say that a speciality takes responsibility for the disease
today the patients flow between different group of doctors
to doctors that believe or do not believe in the disease
I think that if we discover the mechanisms of the disease where the immune system most likely plays an important role
will lead to the understanding of other diseases such as fybromyalgia
What i foremost want to say to you today is that I want to convey hope
realistic hope
hope for a better future for ME patients
there is a major effort being done both nationally and internationally
and individuals are contributing way more than one could expect
to push knowledge forward
I must also say that politically ME is getting attention we have not seen before
and unfortunate it is not the doctors - but the patient groups and the political environment that have pushed M.E forward
I must say that I am dissapointed in the some of the medical community
that have prejudiced the disease and they lack the curiosity that a MD should possess
when we deal with diseases that we do not understand
I want to thank everyone that has contributed and supported our research at Haukeland. Especially the patient driven fund raisers
It is rare that we see so much interest and commitment from the patient and the patient groups
Thank you so much for the help so far