Norwegian Documentary "Sykt Mørkt" - 2 Very Severe ME Patients - 1 Recovers w/ SCIG

[Ravn]

What a moving and sensitive documentary, thanks for sharing @Jesse2233 . Such brave families. Very emotional. Felt so happy for Kristine and so sad for Bjørnar. Does anyone know how he is now?
How was the documentary received in Norway?

 

[MargUK]

Would love to watch this but although I can get the page itself to translate to English, when I play the video the subtitles are in Norwegian and I don't seem to have an option to change this? Anyone help?

 

[Ravn]

Can you tell me if there is any trick to use chrome to get english subtitles? I turned on subtitles then clicked Chrome translate and it didn't work. Nor the other way around either

Edit - never mind - I figured it out.

I had met Bjørnar's mother at InvestInME the last two years - so painful to watch how devastating this disease is and how much it consumes the lives of families...

Can I ask how you got the English subtitles? Like @MargUK I can change the page text but not the subtitles on the video.
While I understand Norwegian myself some of my mono-lingual English-speaking friends and family would really like to watch the documentary.

 

[Jesse2233]

So I've been corresponding with Kristine a little bit, she's a lovely person btw. She said I could share some of what she's told me in case in helps / inspires anyone

• Her onset was mono
• She's still in remission and can hike, bike, and dance, but still has to be careful
• She had both physical and cognitive issues when she was bedridden (classic ME)
• She started responding to the SCIG in 3 weeks
• She's now a politician in Norway

 

[SunMoonsStars]

Ivig is amazing to control symptoms via mine support so Virus can not create the symptoms. But also it does not treat the virus load in my case so even though symptoms are hugely controlled I still am needing al sorts of trails of anti virals and trying IV Ozone etc. I can bet depends on how badly your immunity is suppressed and toxic loads and other infections and time period been ill that causes these build ups. Nothing so simple. For new cases or fairly new and I can bet much better success off the bat.

 

[BFitz89]

So I've been corresponding with Kristine a little bit, she's a lovely person btw. She said I could share some of what she's told me in case in helps / inspires anyone

• Her onset was mono
• She's still in remission and can hike, bike, and dance, but still has to be careful
• She had both physical and cognitive issues when she was bedridden (classic ME)
• She started responding to the SCIG in 3 weeks
• She's now a politician in Norway

How long did she undergo treatment?

 

[Jesse2233]

How long did she undergo treatment?

My understanding is for many months

 

[perrier]

My understanding is for many months

And how are you doing Jesse with the IVIG?

 

[Jesse2233]

And how are you doing Jesse with the IVIG?

No longer on IVIG, doing well on photopheresis

 

[Thinktank]

No longer on IVIG, doing well on photopheresis

Nice, has that been prescribed by your doctor? If not too personal of a question, does your insurance cover the treatment? It must be very expensive otherwise.

SCIG didn't do anything for me, it only left my wallet a lot emptier.

 

[frozenborderline]

Nice, has that been prescribed by your doctor? If not too personal of a question, does your insurance cover the treatment? It must be very expensive otherwise.

SCIG didn't do anything for me, it only left my wallet a lot emptier.

also interested in if insurance covers the treatment

 

[Jesse2233]

Yes my doctor prescribed and got it covered by insurance

More details here: http://forums.phoenixrising.me/inde...t-and-photopheresis.50260/page-17#post-948572