Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

Discussion in 'Rituximab: News and Research' started by urbantravels, Oct 19, 2011.

  1. Freddd

    Freddd Senior Member

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    Hi Leela,

    Actually, the "rare genetic disease" may not be any where near as rare as it was thought in 1978 when I started looking. However, it was rarely diagnosed. I was called names by doctors 30+ years before the adult onset was recognized. The names included "Yuppie flu", "imaginary woman's disease", "Its All In Your Head", "secret alcoholic", "conversion disorder", "hypochondria", "medical students' disease" (data geek disease), "psychosomatic disorder" At that time all known to have it died as infants except for 3 adults with such severe damage as to be institutionalized for life. Obviously at 69 I don't have that. What I do have is an adult onset form that is triggered by something (in my case it appears to be triggered by MTHFR polymorphism and the complete failure of folic acid to work in my body (20 percent of population with another 30% not quite as poorly reacting to folic acid) including most people posting here most likely. I also need l-carnitine fumarate specifically becasue I can't synthesize it as it appears. Again, of those that respond, 90% respond to LCF and 10% respond strongly to ALCAR. It was lack of l-methylfolate that caused me a lifelong borderline macrocytic anemia, MeCbl made no difference at all on that. 30mg daily of l-methylfolate has taken my MCV down to about 93. There appears to be a 4 way deadlock of MeCbl, AdoCbl, L-methylfolate and L-carnitine (fumarate 90% of population, ALCAR 10% of pop), a lack of any one of those causes a methylation/ATP (mitochondria) deadlock that has little to do with CblC disease.

    The official treatment, HyCbl, folic acid and ALCAR works "poorly" in adults. OF COURSE! HyCbl works poorly for about 2/3s of population and not at all for about 1/3 in studied symptoms. Folic acid works poorly for up to 50% , little to not at all for the other 50%. ALCAR works poorly for 90% of those like me. Of course! So you take 0.66 * 0.5 * 0.1 as the composite effectiveness it comes out to 3.3% effective which would account for the combination working "poorly" on adult onset cases. Don't blame the genes for causing the problems caused by the wrong forms of these nutrients that don't work well for most people.

    I had CFS, FMS, congestive heart failure, asthma, MCS and so forth of completely normal characteristics. developing over decades. I was taking a scad of medications. After the first 9 months of MeCbl and one month of AdoCbl no longer had the symptoms on which these many drugs were useful. In all I was able to discontinue Dilantin (neurological pain), 2400mg of ibuprofen daily (inflammation), Albuterol, a couple of other asthma meds I forget the names of, seasonal antihistamines, Compazine suppositories, Provigil and a few others. A few years later I needed to get off Lasix as I ho longer had the 85 pounds of excess water I had accumulated. I have never needed any of these drugs again. I no longer have the symptoms of CFS, FMS, CHF, MCS and Asthma II have not had for 13 years I do have subacute combined degeneration (from the CblC disease) but not severely Like if I hadn't taken the right nutrients.. That is what causes the neurological damages that requires institutional care. My adoptive mother had 15+ years of psychosis before her problem was recognized as B12 deficiency psychosis caused by anorexia.

    With that said, I have found a way for a person to map their deficiencies and a logic to deal with the findings. There are multiple different major paths and lots of minor variations. Each person has to recognize their own patterns of induced deficiencies, the flags of healing and the differences between the two. I am still solving my refeeding syndrome. I'm still loosing to copper deficiency. What comes after copper? I don't know yet as I haven't solved how to get my copper levels back to normal. Copper started having deficiency symptoms for me when I was 7 years into healing. I started having some sucess 2 years ago and more 2 months ago. My liver has finally started to recover some from copper deficiency encouraged antibiotic damage. Most likely it is another micronutrient. Good luck in solving your problems.
     
    Ellie_Finesse, MEMum, Jo Best and 4 others like this.
  2. Valentijn

    Valentijn Senior Member

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    Rarity can be determined from the prevalence rates of the mutations involved.
     
    Snow Leopard likes this.
  3. Gingergrrl

    Gingergrrl Senior Member

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    Just noticed this Rituximab thread that now has 601 posts that I've somehow managed to miss and I thought I'd read all of them... looks like I have some reading to do... :eek:
     
  4. Wonkmonk

    Wonkmonk Senior Member

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    Is it known when exactly the Norwegian study will be unblinded? Wasn't it supposed to be this month?
     
    Gingergrrl and MEMum like this.
  5. Wonkmonk

    Wonkmonk Senior Member

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    Gingergrrl, MEMum and Jo Best like this.
  6. Wonkmonk

    Wonkmonk Senior Member

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    "All patient treatment and follow-up has been completed according to schedule in September 2017. The placebo and rituximab groups will be revealed to the scientists in October, and all participants will receive a letter informing them of which treatment group they were allocated to. We will then start working on the analysis of results, and expect to publish the results of the study in a medical journal during the first half of 2018."

    https://helse-bergen.no/seksjon-eng...atment and Medical Physics/Sider/RituxME.aspx
     
    AdamS, Gingergrrl, Comet and 6 others like this.
  7. Joh

    Joh Inactivist

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    Hi @Wonkmonk, they said repeatedly (e.g. at the Invest in ME talk) that there won't be any hints/information before the publication in 2018. So exiting!
     
    ivorin, Gingergrrl, Webdog and 2 others like this.
  8. Wonkmonk

    Wonkmonk Senior Member

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    Thanks, @Joh. There was talk here in the forum that there might be some preliminary announcement in October, but then that was probably a misinformation.

    So we have to be a bit more patient :rolleyes:
     
  9. Joh

    Joh Inactivist

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    Hi @Wonkmonk, I wasn't aware of that rumor and my info is from May, so it's not impossible that the info I posted is outdated (but I rather doubt it, they seemed quite clear on this). I wonder if the people who took part in the trial and will shortly learn if they got Rituximab are allowed to speak about their experience prior to publication?
     
    Gingergrrl, MEMum and Jo Best like this.
  10. Wonkmonk

    Wonkmonk Senior Member

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    This is a good point, but still that would be only individual reports and we wouldn't know what the percentage of responders is.

    But I have to say I am a bit disappointed by the approach they are taking, because I assume they know treatment of CFS is time sensitive and those who would like to decide on trying Rituximab or not based on the study's results will now have to wait several more months before they can make their decision.

    But maybe there are good reasons for not disclosing anything that aren't immediately obvious to me.
     
    Gingergrrl, MEMum and Frenchguy like this.
  11. Joh

    Joh Inactivist

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    I would have to listen to the Invest in ME DVD again, can't remember the exact wording. But the reasons were along the lines that it would be harder to get something published if the info is already out there. And that it wouldn't help the field to move forward and gain international attention (and thus wouldn't help the patients) if the results weren't published. (from my foggy memory)
     
    Gingergrrl and MEMum like this.
  12. LisaGoddard

    LisaGoddard Senior Member

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    I've been checking their website and PR to see if there is any hints as to the results. 2018 seems such a long way off.
     
    perrier and Gingergrrl like this.

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