A fantastic TV interview aired on NRK1, Norway's main national
television channel, on Friday, 29 October.
The interview has been made available on You-Tube in Norwegian with English subtitles available, but I've included a translation done for us personally in English.
The reporter interviewed Anette Gilje from the movie "Get me well!"; Dr. Mette Johnsgaard from Lillestrøm Health Clinic; and Ellen Piro from the Norwegian ME Association.
Here is the Youtube version:
Click the red CC link on the bottom right for English subtitles
And here is a translation in English (thanks Renee and Ellen):
Reporter: Scientists now believe they are one step closer to solving the riddle of ME. Around 18,000 [in Norway] suffer from the disease chronic fatigue syndrome. A new virus discovery has given them new hope.
Dr. Mette Johnsgaard to Annette Gilje: "You have a positive serology test."
Anette Gilje: "Wow!"
Reporter: Last Friday the result confirmed what she had thought a long time. She has a virus. For 15 years, Anette Gilje has had a diagnosis of Chronic Fatigue Syndrome diagnose, also known as ME. Many people have told her that it is all in her head. This virus may be the evidence that proves they were wrong.
Anette Gilje: "It's good to get an explanation as to why I've had such terrible problems with IBS and chronic inflammation for such a long time, and been so ill. But while it is great to get a serious explanation, the health services do not have any medications as yet."
Reporter: A new Norwegian study shows that 50 out of 80 people diagnosed with ME had the newly discovered virus. It has similarities with the HIV virus, but no one has been able to prove yet that it is contagious. The discovery could revolutionize research.
Dr. Johnsgaard: "It's the first time we have completely objective measurements on some patients in this group. It is time that we begin to find lab tests we can take, which can define the disease. If the ME sufferers are sick because of this virus, they must get a completely different treatment than today."
Anette Gilje: "We are a big step closer to the solution ... and it gives hope for treatment!"
Transcript of the interview with Ellen Piro:
Reporter: Ellen Piro, welcome! Hope is taken hold now; you may be on the trail of the cause of this disease. What does it mean?
Ellen Piro: "This is a very misunderstood disease. We patients have always felt that there is an underlying infection. We do not know yet if this virus is the direct cause or secondary.
"There are many questions that remain to date. Anyway, it's very exciting.
"What concerns us now is that we see ME patients giving blood."
Reporter interrupts: We will come back to it, but let me first ask you: At what degree is what we see now ... this discovery of this virus more than a hypothesis?
Ellen Piro: "It is absolutely certain that the virus is there, and it does not go away. And they find it in large quantities in this patient group. It was first detected in men with prostate cancer, and then in 2009 came this discovery. It is very, very exciting."
Reporter: Why is it so important to clarify the cause?
Ellen Piro: "Of course we want to know why we have had an infection and never become healthy, and we are also looking for treatment. This disease has turned our lives upside down. And many are very, very sick."
Reporter: What kind of problems do these patients meet who suffer from this disease?
Ellen Piro: "Especially distrust, because the standard tests show nothing, or very little, so patients are not believed and it becomes very hard and very difficult."
Reporter: What challenges are raised if it is a virus that is causing this?
Ellen Piro: "It's what we have believed all along, but it opens the possibility for treatment and now there's a lot of activity in research around the world."
Reporter: Is it about time, do you mean?
Ellen Piro: "Yes, it's about time!"
Ellen Piro: "We have been at it for a long time, waiting and searching and hoping. And this gives absolute hope."
Reporter: You said yourself that you have been working with this issue for 23 years. Tell us a little about the struggle for recognition of the disease.
Ellen Piro: "In my case I was lucky because I got an early diagnosis in London and help there. At that time, 23 years ago, ME was totally unknown in Norway even though it has been listed in the World Health Organization's diagnostic system under neurology since 1969. But it was unknown at the time."
Reporter: You mentioned earlier in this interview; there is a debate if ME patients should be able to give blood or not. What can you say about that?
Ellen Piro: "Scientists abroad are very concerned because they have found positive XMRV in the blood supply, or in healthy people. I have got figures from Belgium now; they have looked in the blood banks - in healthy people. In Europe, it seems that there are 2% of healthy people who test positive. In Japan, they found 1.7%."
Reporter: What does it mean?
Ellen Piro: "This means that it is found in healthy people and we are concerned about transmission. We see that it occurs in families, and we now want the Norwegian health authorities to take this seriously and give a total ban for patients with ME that they should not donate blood."
Reporter: Because you fear that this disease is transmitted by blood transfusion, for example?
Ellen Piro: "Yes."
Reporter: Ellen Piro, thank you for coming to the Morning News.
---------- End of interview -----------