Article about new potential treatment by Victoria Bohne, in Norwegian

mango

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Ut av mørket med ny medisin
ME-sjuke Eirik Aksnes har den siste tida hatt ei oppsiktsvekkjande betring, takka vere ei heilt ny behandling som blir utvikla frå Askøy.

http://www.kvinnheringen.no/me/medisin-og-helse/nyhende/ut-av-morket-med-ny-medisin/f/5-27-24661

Google translation:
Out of the darkness with new medicine

ME sick Eirik Aksnes has lately had surprising improvement, thanks to a completely new treatment being developed in Askøy.

Almost one year has passed since the family chose to fetch Eirik Aksnes (29) from the nursing home in Stavanger and home to Uskedalen. In a specially adapted room - soundproof and dark - the young man has been laying totally protected from impressions since then. For two years he lived literally in the dark. But lately, a drastic change occurred. When visiting the room in the basement now in May, the lamps in the room are lit. The large soundproof wall that has separated the room from the rest of the basement, is moved aside. From his bed in the room Eirik welcomed us without the dark glasses that he was not able to survive without only a few months ago, and he talks with clear and distinct voice.

- I have received a completely new everyday life, and I actually feel better physically than I have done in many years, he says.

Pushing oneself
Eirik Aksnes is considered one of the worst ME patients in the country. He tells about an everyday life where the pain was enormous, where being exposed to something so small as a candle felt like staring straight at the sun. Where the smallest sounds were experienced as if someone tried to explode his eardrums, where the smell of mild soap made him so nauseated that he squirmed in discomfort. And in spite of being in bed all the time he really struggled getting sleep.

- I have noticed the ME-symptoms for many years, but before I got to know about the disease ME I did not know what I was struggling with. Since I was 17-18 years old I experienced that I've had a change in blood pressure and pulse, sore muscles, I had to struggle to feel well rested after sleep, and I have recovered badly after exercise. Foods and alcohol I was very sensitive to, and stuggled much with concentration. Many times I experienced I had to read one paragraph in a book several times to understand what it said. It felt like I always had the flu, he says.

After finishing day at college and job the jazz musician let himself right out to building up energy again. To be in large crowds whiped him out, so those he had to avoid. Several times he talked to his doctors about the torments he felt, but the advice was usually that he only had to try a litte harder; get out and 'live a little.

- So I did exactly that. I pushed myself more and more, to do the things I wanted to do. I exercised, I was out in nature and I tried being social. But the more I pushed, the worse I got.

Then, two years ago, came the complete collapse. In two months Eirik lost 18 kg muscle mass, and life in darkness began.

Received an offer
- Is it possible to depict how life was during these two years?

- One basically has no energy to think of anything else than to avoid impressions. One doesn't have a choice, every minute is spent trying to figure out how to avoid pain, how one can improve. When one is as sick as that, everything is completely devilish. One has so to speak all the symptoms that exist, and the sensitivity of the body is on tenterhooks, he explains.

He had very big need for help because of the pain; could not even eat or go to the toilet by himself.

- But despite the fact that I was so ill, there was doubt held against me and the illness. I was mostly dismissed with that I was probably mentally ill, or that I'm not trying hard enough to get back on my feet. My despair was great when I saw how hard my family had to struggle to get help to take care of me, and I worried that they would get hit.

In autumn he was finally granted a client-managed personal assistant, and since then the working pressure was relieved from the closest family. But Eirik's worry about his health naturally did not end there. Joyful it was then to see that a completely new medicine Eirik got to try out, began to work.

- We were contacted by a couple whose name is Victoria and Øyvind Bohne in Askøy. They had developed a completely new medicine against ME, only Victoria and one other had tried it. But the results they had received was surprising, so after discussing it a little back and forth, we decided that I'd agree to try it. I didn't have anythin to lose, says Eirik.

For two years ME sick Eirik Aksnes (29) was lying in total darkness, protected from impressions. But after testing out a new medicine, he has been surprisingly improved, and tolerate impressions like light and sound again.

New life spark
He received the first dose last summer, and little by little it began to work its way through the body of Eirik. And now in April / May this year, it has let go completely. His senses has begun to work like they should again, the stress reactions in his body has gone down, the pain has been more or less gone and brain fog has relieved. Eirik simply feels healthy from the ME illness.

- But as soon as I'm not taking medication, the symptoms come back. I think this is proof that ME is a chronic, physical condition, and therefore not something one can "think" oneself healthy from, he says.

He realizes therefore that he probably is going to be dependent on medication for all future, but he sees that as a far less of a problem than if he were to get the symptoms back. With new life spark Eirik has begun to feel happy about coming out of the basement, see daylight, embark on a normal everyday life again. A little fly in the ointment is there unfortunately; an old neck injury from a car accident Eirik was involved in as a child has been triggered after his eagerness to get out of bed managed to twist the neck in the wrong position. Therefore he still lies down, but from the bed he's keenly searching for the right help, and hopes that he will get this fixed in the near future.

- What are your thoughts on your years in the dark, are you bitter?

- I was more bitter before, when I did not know what ails me. Now, we have an explanation for why things have been as they were, says Eirik.

He emphasizes:
- Many times have it struck me that the years in the dark could have been avoided if they had taken me seriously in an early stage. Still the way ME patients are being treated is too lacking, despite the fact that it is known what kind of follow-up these patients need. I do hope that what I have been through can be an important contribution in the efforts to increased understanding for ME from here on, because then it has at least been good for something, he says.

May have solved the ME mystery
When researcher Victoria Bohne got ME, she and her husband Øyvind developed a medicine against the disease. It is this Eirik Aksnes has got to try out over the past year.

Norwegian Russian Victoria Bohne has a doctorate in fish nutrition and toxicology from the University of Bergen and the National Institute of Nutrition and Seafood Research. She has also graduate subject in microbiology, and has worked with gene characterization and development of vaccines at UiB.

- I have roughly a five-year education within the basic biological sciences, including cell biology, cytology and histology from Russia, as well as certificate to worke with laboratory animals. In Russia I worked as a clinical physician, says Bohne. She has done research and taught, and the last few years has she worked as a research adviser at University College Bergen. When she herself was struck and finally collapsed with ME, she saw it as a large personal tragedy. Not least because illness prevented her from doing the simplest things. Not only was she not able to work, but the mother of three barely even managed to get around inside her home.

-Finally I cound not get out of bed in the total. I had unbelievably little energy and could barely think. I decided that I had to find a solution to this, no matter the cost. Together with my husband who is also an educated biologist, we used a lot of time on creating interesting forms and hypotheses for what could cause ME, and what chemical reactions that occur in the body, explains Bohne.

Manipulates condition
The couple eventually made findings they describe as striking, and used the findings to develop a medicine.

- We experimented with this on me, and documented the findings along the way. Shortly into the treatment we saw that symptoms began to disappear. We proved that an important puzzle in relation to ME had been solved and that the disease definitely has a physical cause, since we were able to manipulate the state both ways. Once we stopped the treatment, the symptoms came back. And once we started the treatment again, symptoms stopped.

Having tried the medication on herself and on another, Bohne read an article about ME sick Eirik Aksnes. She contacted the family with any offer to let him try the treatment, and when she got a yes, she and her husband traveled to Uskedalen and stayed there for several days to follow him up.

- This medication is primarily meant for those who have a very low functioning level because of the disease where symptoms are very pronounced. Today, all three of us who uses the medicine are symptom-free, and a fourth ME ill person will be starting with the treatment now, says Bohne.

The secret behind the medication she can not tell anything about at this stage. The couple has an agreement of intent with a German pharmaceutical company, and will enter a negotiation meeting about this in June. The drug must be tested and investigated further, and if everything goes as Bohne hopes, it may become a recognized treatment for ME illness in the future. [...]
 

A.B.

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Seems a little fishy in more than one way.

"We have an amazing treatment but we can't tell you anything about it except that it cures all symptoms in severely affected patients. Oh and by the way we tested this by privately approaching patients."

Reads more like something one would write to attract the attention of investors.
 

BurnA

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Until it's proven scientifically its pointless.

I wish they wouldn't write this stuff until they at least published some sort of proper study.

Until they do, I'll be treating it as garbage along with every other anecdote I hear.
 

Snowdrop

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It says Eirik received his fist dose last summer (that would be summer 2015?)
So he was sick for some time before that. It looks as though he was sick for some time in 2014--Article here: http://www.kvinnheringen.no/nyhende/ei-mors-kamp/s/1-1245635-7690878 (sorry don't know how to translate)

You can google Eirik Aksnes and find him (the jazz musician) here:

In the program of the jazz festival 2013
https://www.uis.no/fakulteter-insti...stival-paa-klubb-sting-article77595-8838.html

If this cure works it would be good to know how and under what circumstances--people certainly have the right to know what they're taking.
And one needs to continue to take it or the symptoms come back (always good for cash flow).
 

Justin30

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Why doesnt someone reach out to her and her husband as ask why they have realeased virtually non of the info associated with the drug?

I heard nothing about trials etc while reading so highly experimental could this have a legal component?

It could be asked of them if they have been in contact with other large research groups?

Just playing devils advocate....many that have gotten better have all used different treatments we are all different.

I am playing devils advocate so no attacks here please:)
 

valentinelynx

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The evil is the years of suffering while waiting for a pharmaceutical company to perform its tests and decide whether or not it wants to spend the money to develop the drug. And if it does, then it needs to apply for approval of the drug in various countries in order to sell it. Could be ten years or more. And the company may decide it's not interested after all. Meanwhile, we are left wondering if there is something out there that could help.
 

mango

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As with everyone else, I'm skeptical, but would like to hear more!
Same here!

Why doesnt someone reach out to her and her husband as ask why they have realeased virtually non of the info associated with the drug?

I heard nothing about trials etc while reading so highly experimental could this have a legal component?

It could be asked of them if they have been in contact with other large research groups?
Lots of questions have been asked over and over again in some of the Norwegian discussion groups (closed groups, so I'm not able to share more here), and Victoria Bohne has participated in many of the discussions herself. You can join the groups and read for yourself, if you'd like.