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

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Jesse2233, Jul 7, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    Both patients are close to Whitney's level (total darkness) though they can still speak on occasion.

    One recovers significantly to a level of functionality (due to SCIG, Gammanorm, 1 injection once a week for a year) where she's able to do political campaigning and advocacy work (walking around outside, handing out fliers, speaking in front of an audience, etc). She had been bedridden for 5.5 years (feet had not touched the floor in that time).

    There are also clips of Mella on local TV

    Worth watching: https://tv.nrk.no/program/KOID75006214/sykt-moerkt

    English subtitles are available by turning them on in the lower right and enabling Google translate in Chrome.
     
    Last edited: Jul 7, 2017
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  2. Jesse2233

    Jesse2233 Senior Member

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    Some screen grabs of Kristine's recovery for those unable to watch:


    upload_2017-7-7_21-55-0.png
    When she is in total darkness

    upload_2017-7-7_21-56-29.png
    Beginning to sit up, and see light

    upload_2017-7-7_21-57-12.png
    Walking, and leaving her room for the first time in 5 years



    Venturing out


    Catching up with a friend


    upload_2017-7-7_21-47-16.png
    Biking again for the first time

    upload_2017-7-7_21-48-59.png

    Walking around campaigning for the Norwegian Green Party after biking

    upload_2017-7-7_21-50-2.png

    Advocating

    upload_2017-7-7_21-51-17.png

    Celebrating at a party + drinking
     

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  3. Jesse2233

    Jesse2233 Senior Member

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    I would be remiss not to mention Bjørnar, the other very severe patient who did not get better. As far as I know he is still in the same condition although he also received SCIG. His story is very moving as is his family's care and I hope very much that there will be a better intervention for him soon
     
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  4. Sancar

    Sancar Sick of being sick ~ and so is my walking buddy

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    @Jesse2233 ~ Thank you for sharing that. I wasn't able to bring up Google on my iPad. I did listen and watch the program. Very touching.

    Parden my ignorance but what is SGIV? Again thanks~~
     
  5. Jesse2233

    Jesse2233 Senior Member

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    @Sancar

    Sub cutaneous immunoglobulin

    Basically lower dose IVIG through a shot instead of IV
     
  6. Sancar

    Sancar Sick of being sick ~ and so is my walking buddy

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    That's what I'm currently taking. 2ml a week. Gammastan. It's been about 3 months. I haven't noticed any significant improvement. I think I did at first, almost like my body soaked it up. Then it waned. I believe the IVIG is the the best treatment protocol.

    How are you doing with your IVIG treatments? Do you notice your overall health getting stronger? I sure hope so ~
     
  7. Jesse2233

    Jesse2233 Senior Member

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    Aww thank you Sancar. I think it's too early to say for me. My understanding is that it takes around 4-6 months for IVIG / SCIG treatment to have effect for autoimmune / autoinflammatory conditions
     
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  8. Sancar

    Sancar Sick of being sick ~ and so is my walking buddy

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    @Jesse2233 - Good to know. I guess we have to keep up the treatments to see how they will pan out.
     
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  9. medfeb

    medfeb Senior Member

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    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...
     
    Last edited: Jul 8, 2017
  10. Jesse2233

    Jesse2233 Senior Member

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    Not sure. I watched on a 2015 MacBook using the latest Chrome if that makes a difference. It just happened automatically for me after I clicked the subtitle button
     
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  11. Jesse2233

    Jesse2233 Senior Member

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    Kristine is still in remission today (4 years after the documentary was filmed)
     
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  12. anniekim

    anniekim Senior Member

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    Is that remission to almost 100% functioning? Thanks. Impressive.
     
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  13. BFitz89

    BFitz89

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    Theoretically what would the cost be for one to receive this treatment?
     
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  14. Jesse2233

    Jesse2233 Senior Member

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    It seems that way yes. I would imagine she's an 8 or 9 on the PR scale

    Not sure. Perhaps a few hundred a month depending on insurance
     
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  15. junkcrap50

    junkcrap50 Senior Member

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    Do you have any other literature, papers, sites, evidence, or PR threads about IVIG helping CFS? I've heard of the therapy, but never as a potential treatment for CFS. I've heard it used for PANDAS and MCAS. What is the hypothesized mechanism for CFS?
     
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  16. Navid

    Navid Senior Member

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    Wow, what a wonderful film. So simple yet moving and informative. A miracle for Kristine. Were there any markers for either patient that SCIG could help them or was it just another shot in the dark....that luckily for K gave her back life.

    I hope they are studying why this treatment worked for K and did not help B.

    The families were so loving and beautiful and the patients are us.

    Thank you @Jesse2233 for sharing this movie with us. I hope everyone watches it.

    And I pray researchers study why the SCIG can help some but not others. There obviously are answers out there we just need the people and the money to find the keys to unlocking this great mystery and giving us life again.
     
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  17. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    The non-self antibodies could potentially compete for the prolonging of half-live through receptors with pathological antibodies, or some similar process.
     
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  18. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Shot in the dark. Quite a few have tried injections without success.. Anecdotally though, there seems to be more who responds to ivig, which is hard to get your hands on. Might be dosage related
     
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  19. Jesse2233

    Jesse2233 Senior Member

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    There are conflicting studies on IVIG's efficacy. Prof Andrew Lloyd had two, the first showing 40% returning to work, the second showing very little response. I reached out to Prof Lloyd about this discrepancy and he told me the first study likely had too many subgroups. Still symptomaticly the participants in the first study seemed well selected

    There are other studies as well if you search. Cort has a good compilation on Health Rising.

    Drs Meirleir, Teitelbaum, Chia, Peterson, and Kaufman all use IVIG from time to time. Dr Chia told me there's a 25% success rate. Dr Park of Seoul claims a 90% success rate from his special protocol which includes SCIG, but that number has been disputed
     
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  20. Cinders66

    Cinders66 Senior Member

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    I'm skeptical about whether Kristins fortunate recover was definitely drug related.

    These might not be the two best examples from UK as both have crashed again, one severely but a well known very severely affected teen improved from five years of tube feeding to going out and about - unfortunately she relapsed to requiring a tube again. Also Another well known, made remarkable progress - wedding, honeymoon abroad etc - after her illness turned around pretty much by itself and then she did rehabilitation. Unfortunately she's had a relapse hopefully, short lived. They might not have reached remission heights but came round from a very low place.

    Without blood tests supporting why the drug worked in one and not the other, was this shot in the dark treatment or based on abnormalities? I don't think we know.

    I also think we need much more research on the severe. I only know of ron Davis' Stuff and a small MEA funded study actually specifically on severe ME. Given that recent research (by Newton was it?) found that something like just 20 out of hundreds of biomedical studies were on severe ME yet it's estimated 25% of sufferers are labelled so, we aren't seeing proportional research and in fact I think those living dead in blacked out rooms are a higher priority than the newly ill in work, who really mainly need good management advice to stay high function.

    We simply have no idea whether treatments for those of us bedbound will come any time soon, I'd say unlikely, because there's so much complexity to severe ME and we have hardly scratched the surface.
    Many have hopes for rituximab but don't necessarily think it will help the most severe. I don't know whether the Norwegians are trying their other drug in the severe, didn't they say they hadn't been able to as they couldn't get the most severe to hospital for treatments? If it wasn't for ron Davis' research we'd have little to get excited about.
     
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