Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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New Mella talk, exciting reveals

Discussion in 'Other Health News and Research' started by Marky90, Oct 11, 2016.

  1. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Key points:

    rtx dosage is halfed in current study
    if rtx-study is positive, probably need to be replicated in other countries before approved, but probably not in norway
    last year done metabolic studies (on the study-participants). 200. looking at the amino acids. they have also found a faulty energy metabolism. patients cant make enough atp, especially in women, and especially in white lymphocytes. Mella: this is why patients get lactic acid. when people e.g. run, atp-production increases by 70-80 fold, so even small defects can have big consequences.
    one patient had 4 times more lactic acid when standing
    they have found same metabolites as navieaux
    they dont think its hibernation like navieaux, but that it is a battle in the body to overcome the energy defect. therefore light sensivities etc.
    pending paper to german journal.
    They have measured oxygen uptake and lactic acid uptake, and found differences. "the disease is not in the mind".
    Found two genetic abnormalities in families with ME

    on the cyclo studies:

    they see responses, even though cellular mechanisms are different from rtx. peculiar drug, effects vary with dosage and time given. not a new drug, but what is new is that it works on some ME-patients. Could not give numbers: but they were astnonished over the amount having effect. what was negative: many responders get worse for a period. Positive: rtx non-responders may have effect from cyclo.

    mella emphasizes that not all immunosuppression works (e.g. steroids and etanercept)
    emphasizes the need to be systematic when investigating potential immunological diseases
    they have a new biochemical researcher due to the metabolic testing
    other hospitals are becoming enthusiastic from seeing the cyclo results

    there is a factual increase in ME-why? vaccines? etc

    question: what side effects may happen with rtx? "some extremely rare neurological conditions. allergic reactions more frequent (to the animal proteins in rtx). the b-cell depletion does not really cause infections, due to circulating antibodies (igG). But as they fall over time with long treatment, infections may be more frequent. The most frequent side effect: transient worsening of disease. one patient in phase 2 who received infusion was in remission: then relapsed under infusion. very peculiar, what is the mechanism? she later got better again. "

    question: is there more ME in norway? Mella: "this is not systematically investigated. Current studies have often been done by phone. In norway- use of registers. Pretty certain: more in north europe, than south europe. but it happens all over the world. a lot of patients feel better in warmer climate."

    Question: is gut flora being researched? Mella: "yes. unsure how important it is. cause gut problems go away with responders. Mella is skeptical of the tabloid notion that its all in the gut"

    Question: Your talk gives hope. whats the time horizon before treatment? alternative treatments? Mella: "Maybe som supplements might have slight effects. might try such on nonresponders to both cyclo and rtx. not happy about private rtx. but he also understands patients trying it. they know dagfinn øgreid well, but disagrees with trying it outside clinical trials. because effect cant be verified. time horizon? difficult, its up to the politicians. it is a sensation that fluge will have the main talk at the conference in florida. he thinks that if it was done at stanford, the world would explode from excitement. norway is in the outskirts" .

    question: do you think there is subgroups? Mella: "yes. very common in autoimmune diseases. underlying mechanisms may be different, even though the symptom picture is the same. this is seen in ME. "

    Question: regarding saltintake. do we need more? Mella: i"t seems me-patients have low blood volume. and some have a smaller heart. thinks it might be benefical, but it dont treat the underlying cause. "

    Question: what food is best when having PEM?: Mella: "i dont have the recipe, because we dont know about the mechanisms.... when i walk up the stairs i get lactic at the top, but it disappears in 15 seconds. this does ot happen with ME-patients.

    question: "i hope you apply for the new grant advertised in norway so that the psychobabblers dont get it. just a little tip. Mella: the grants is at least having more specific requirements."

    Question: Can vaccines give ME? should we take it? Mella: "that seems to be the case. the risk is low, so i cant give a definite answer".

    question: the kavli-fond gives you much money? Mella: "4 million NOK the last 2 years"

    Question: What counterarguments against salt water injections? Mella: "not enough studies. so might be hard to get from hospitals. but low risk of side effects. ask your GP (if hes nice).

    question: when does the cyclo results come? Mella: "in around 6 months. Part B with 20 severely ill ME-patients already approved. the protocol might have to change in a potential phase 2. because of many side effects. maybe dosage must be lower, and the time interval changed. so maybe protocol will change on severely ill. but all in all very positive findings. and some rtx responders with relapse feel better after response on cyclo, but also vica versa"

    question: why cant we say when treatments may be available, when patients are suffering so much with no life in darkened rooms. they only exist. does this not mean to be ethically discussed? Mella: "one of the problems, even though the rtx is safe for other conditions, not neccesarily ME. But this is a dilemma. And hard for us. even though rtx is approved overnight: we do not have the apparatus to treat 10 000 patients. but we need to be strict to get the research done. we need to treat the placebo-patients first. "

    question: regarding the private clinic: can they contact u?
    Mella: "the private clinic should register side effect and responses.

    question:
    can you say something about LDN? Mella: "well.. there are some reports of improvement. but its usually slight. we think we might understand why."

    question: if you get benefit for something, is there a risk of overdoing it and getting worse? Mella: "yes there is a theoretical risk, but patients are often good in pacing accordingly. one rtx-patient in phase 2 startted jogging under remission, and relapsed. so then youre not well."
     
    Last edited: Oct 11, 2016
  2. Aurator

    Aurator Senior Member

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    The one thing I dare to hope for in all of this is that Fluge and Mella will continue to be allowed to do what I'm sure they've wanted to do from the outset, which is to let the science do the real talking. Whatever comes out of their studies, whether it's good news or bad, I hope for all our sakes the science at least is irreproachable.
     
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  3. Neunistiva

    Neunistiva Senior Member

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    Thank you so much for the summary. Where was this talk?

    Just a small note, Dr. Naviaux doesn't think it's hibernation either:

    I wouldn’t use the term hibernation to describe chronic fatigue syndrome. Humans do not hibernate. ...
     
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  4. Neunistiva

    Neunistiva Senior Member

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    I must say this may have more to do with North Europeans knowing English better than the climate. I live in South Europe and the cluelessness about ME/CFS is astounding. Only my knowledge of English and science has allowed me to read everything and in turn educate doctors.

    Living in warm climate all my life didn't stop me from having very severe ME.
     
  5. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    No worries. It was at a movie theater in Arendal, Norway. :)
     
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  6. Aurator

    Aurator Senior Member

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    Not an inappropriate venue: to many of us they're as good as film stars.
     
  7. Neunistiva

    Neunistiva Senior Member

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    Which movie was playing? ;)

    Haha, just kidding. I meant, was this some scheduled medical conference, or some other occasion?
     
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  8. paolo

    paolo Senior Member

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    Where does this speech by Mella come from? Is it an interview or what?
     
  9. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Haha :)

    It was arranged by a local patient organization.
     
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  10. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    It was from a talk he held 1 hour ago.
     
  11. NL93

    NL93 Senior Member

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    Thanks for the summary @Marky90 ! Interesting stuff
     
  12. Sidereal

    Sidereal Senior Member

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  13. A.B.

    A.B. Senior Member

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    Game over psychobabblers. You misinterpreted a serious disease for laziness and irrational beliefs. Now move aside for the real scientists.
     
  14. Hip

    Hip Senior Member

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    Some interesting figures: a human will make around 50 to 75 kilograms of ATP daily (created by converting ADP to ATP).


    I wonder where specifically the defect in ATP production lies in ME/CFS patients. That defect could be a target for treatment.
     
  15. paolo

    paolo Senior Member

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    I live in South Europe, too. And I have this disease. Nevertheless, it may be something similar to what we see in MS: the higher the latitude, the higher the prevalence. Or it may be something linked simply to thermodynamics: in warmer climates you have to spend less energy in thermic regulation, so you have more ATP to spend for other functions. I don't know.
     
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  16. paolo

    paolo Senior Member

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    Thanks @Marky90

    Is there a video? Will it be available?
     
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  17. Matthew Jones

    Matthew Jones Senior Member

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    Looking forward to the cyclo results, 6 months isn't that long to wait !
     
  18. BurnA

    BurnA Senior Member

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    Hi @Marky90
    Great work to get the summary out so quick !

    A couple of questions, if you don't mind.

    When you say rtx halved in current study, which study are you referring to ?

    Also, apart from treatment trial results, ( which are encouraging ) it seems F&M are shedding light on mechanism or at least what they believe might be a mechanism. ( ATP, lactic acid, metabolites etc. ) Did they indicate if they would have any specific papers on this topic ?
    Presumably they have run some trials we are not fully aware of?

    Thanks again.
     
  19. Grigor

    Grigor Senior Member

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    I started crying while reading this. Not sure why. But very very promising and just clear science. Not this BS we've been listing to for decades. Thank fudging God.
     
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  20. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    yes there is, in norwegian though!
     
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