Just received this from Co-cure: presumably it's in relation to the work presented by Fluge & Mella at the London Invest in ME conference. I don't know to what extent the embargo is still in operation but presumably the info in this report has come from a press release - it's only at a very general level though and I think we should assume the embargo on any detail is still on until we hear otherwise.
My bolding.
My bolding.
Note: To turn on English subtitles in the video click the 'cc' button
at the bottom of the player [that's the rectangular button to the left of the little cogwheel thing that only appear once you start playing the clip].
----------------------------------------------------------
News on TV2: Rituximab at Haukeland Hospital and MEandYou gives away 3
million NOK!
This is the translated text and the subtiteled video from the TV2-news
from 21.07.13.
ENGLISH:
Two years ago, two scientists at Haukeland University Hospital
published a medical breakthrough suggesting that ME may be an immune
disease.
Now they are ready with a new folllow-up trial that shows even higher
rates of effect – and they also get up to 17 million to make a huge
survey and that should provide the definitive answer to the disease.
Medical doctor and ME-patient, Maria Gjerpe, presents nearly 3 million
collected money (through MEandYou) for the researchers at Haukeland.
Two years after they published sensational research suggesting that ME
is an immune disease, they have received a total of 17 of the 22
million they need – enough to investigate further.
Olav Mella: – These funds are vital for us to conduct a larger study
of 140 patients to confirm or deny the results of our two previous
studies.
Cause Olav Mella and Øystein Fluge has just crossed the finish line
with a new study that confirms the first. They have also increased
medication doses and build a more prolonged effect.
Mella: - A new study that we just are trying to make up shows that we
can achieve a significant prolonged improvement of symptoms if we give
multiple infusions.
But a much larger study is still essential before one can possibly
offer treatment. And it is hugely important for a patient group, many
have not only been extremely ill, but also have felt suspected and has
been labeled as mentally ill.
Gjerpe: - The patient group is very hopeful regarding what takes place
at Haukeland Hospital. This is the closest we have ever been in
relation to find a treatment and to understand the disease mechanisms.
Now, a patient group that counts several millions worldwide hope that
they can be just as healthy as the Norwegian pilot patients went. But
in some places they do not want to wait for the research.
Cherry Cordova is on the way to her doctor in Silicon Valley. It began
many years ago when Cherry, who is a researcher, attended an IT
conference in Madrid. There, she caught something that felt like
influenza.
Cordova: – It took about ten years before the body temperature dropped
to normal levels.
At Dr. Andy Kogelniks clinic in California she gets treatment for ME
with a type of medicine that actually usually are used to treat severe
cancer.
Kogelnik: - I would argue that a neuroimmune disease is a very serious
disease, and if I had two pick, I would probably rather have cancer.
It was the doctors Øystein Fluge and Olav Mella of Haukeland Hospital
who by chance discovered that this medicine also appeared to be work
in chronic fatigue syndrome.
Kogelnik: - It is obviously something which takes them from a very low
level of functioning and raises many of them, certainly not all, on a
much higher level of functioning.
Andy Kogelnik heard about the Norwegian method of treatment that
affects the immune system and now he has given it to about 40
patients, including Norwegians, who travel to California to be
treated.
Cordova: -It felt like a switch had flipped in my head, and I can
think clearly again. I am somebody that rather would try something,
even if there is some risk, and the benefits certainly outweigh the
risks for me. Thinking that maybe I can get some of my life back.