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Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
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Rituximab study in norway. An application to The Research Council of Norway

Discussion in 'Rituximab: News and Research' started by deleder2k, Jul 5, 2014.

  1. IreneF

    IreneF Senior Member

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    Thank you, DanielBR. When's the exam?

    I don't see how vascular effects can explain all the symptoms we experience. Some of them, maybe, but I think they are downstream effects consequent to something else.

    I wish someone could explain why we have problems with NK cells.
     
    NK17 likes this.
  2. Snow Leopard

    Snow Leopard Senior Member

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    Do we want to increase NO?

    There was a placebo-controlled trial of Viagra in CFS patients starting like 4 years ago or something (in the USA), but the results have not been published to date, I think the trial may have ended early or something.
     
  3. Jonathan Edwards

    Jonathan Edwards Board Member

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    It sounds from DanielBR's excellent trawling that viagra does increase NO, but only locally maybe - perhaps including lungs.

    For what it's worth my suspicion is that NO in the lungs is not going to make people feel too good. Having had a prostate cancer taken out I have used viagra. On one occasion I made the mistake of using it while on a week's high altitude off piste ski-ing trip (3000M). That day I felt short of breath, nauseous and my legs wouldn't work. I had to go home to rest. Maybe what is needed is more NO somewhere else!
     
  4. deleder2k

    deleder2k Senior Member

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    Does Cialis work in the same way? I have 30 pills. My GP said it was safe to combine it with propranolol, so I might give it a try.
     
  5. Jonathan Edwards

    Jonathan Edwards Board Member

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    As far as I know the drugs have the same action. They differ in half -life only.
     
  6. deleder2k

    deleder2k Senior Member

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    Aha.. Ok. Looks like there was a Viagra study in the planning called "CLINICAL TRIAL: USE OF SILDENAFIL (VIAGRA) TO ALTER FATIGUE". Looks like it is postponed or cancelled. Not sure why that is.
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Arginine is an alternative to increases NO??
     
  8. Forbin

    Forbin Forbin

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    Not that I pretend to really understand this stuff, but Dr. Martin Pall's hypothesis seems to be that high levels of NO "initiate" ME/CFS and are then maintained by various loops. It doesn't sound like you would want to increase NO under that hypothesis.

     
    wastwater likes this.
  9. alex3619

    alex3619 Senior Member

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    I am fairly sure that blanket increases in NO production are not what we want. What we want is to restore normal NO regulation and function. In particular, we want to prevent production of peroxynitrite, while maintaining normal NO. Nobody said this would be easy. I suspect adenosyl cobalamin might have a role there.
     
  10. Helen

    Helen Senior Member

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  11. Sasha

    Sasha Fine, thank you

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    I took some sublingual adenosyl cobalamin at an early point in Fred's methylation protocol and it was as though my batteries were suddenly being charged. I could actually feel it happening within about 30 seconds. I continued taking it (of course!) and had more energy than normal for a few days, could walk much further than before, and then it all started to go into reverse and I ended up getting very debilitated over the subsequent weeks, despite taking plenty of potassium. I've tried two different methylation protocols since then and got the same severe debilitation. I tried the cobalamin again, of course, but no effect.

    It was a strange experience. Usually nothing has any effect on me, and I've tried loads of things. However, given what happened, I'd certainly buy the idea that adenosyl cobalamin has some kind of role to play, at least at some point.
     
  12. IreneF

    IreneF Senior Member

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  13. deleder2k

    deleder2k Senior Member

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    @Jonathan Edwards, I found something more on plasma exchange. This is from Fluge and Mellas application for the study KTS-3-2010, B-lymphocyte depletion with very severe chronic fatigue syndrome, which ended in 2013.

     
    wastwater, vli, Roy S and 4 others like this.
  14. optimist

    optimist Senior Member

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    I have no idea about this, but what about dialysis? Could that make a difference? If the issue is stuff in the blood, can't it just be replaced? Perhaps just with temporary effect?
     
  15. Jonathan Edwards

    Jonathan Edwards Board Member

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    Thanks Deleder2K. I was aware that Oystein Fluge had treated some cases but I did not want to mention something discussed in conversation. I think I am allowed to say that we agreed that the results so far are hard to interpret either way. Neurologists in the UK, and probably elsewhere, are using plasma exchange to tackle distressing autoimmune neurological disease that needs tackling urgently, for which rituximab is slow. But to be of value that almost certainly needs to be followed up with other things like steroids and immunosuppressives. I constantly ask myself why ME does not seem to be so 'urgent'? There are probably three answers. One is that some of the other conditions include movement disorders that prevent any normal activity or even standing up or sleep. More tellingly though, we come back to the absence of an autoantibody marker in ME that would make theoretical justification solid and we do not have objective signs to measure, at least not consistently across a population. What I think is encouraging is that at least one neurological colleague, expert in this field, is ready to take the issue of autoimmunity and immunotherapy in ME seriously and share thoughts.

    With regards to dialysis, Optimist, plasmapheresis is really just dialysis but at a different molecular size level. Dialysis gets rid of small molecules like urea. To get rid of antibody you need a filter that just saves cells and gets rid of proteins, replacing them with healthy plasma. In fact this is best done with a centrifuge. It is more complicated than dialysis because of the need to replace with donor plasma and because (at least in the past) it requires bigger shifts in and out of volume at any one time, which can cause problems for people with heart disease. Various specialised forms of '-pheresis' are now used in haematological disorders and it may be that the technique is now so much slicker than it was when most used in autoimmunity about thirty years ago that it should be considered more often. Having to use plasma is always an issue, however, since there is not an endless supply and it has its own potential unwanted effects.
     
    vli, Roy S, melihtas and 11 others like this.
  16. optimist

    optimist Senior Member

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    NK17 likes this.
  17. NK17

    NK17 Senior Member

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    I really like the direction this thread is taking and I'd like to thank @deleder2k for uploading resources that otherwise would be out of reach for most of us patients and clinicians/researchers alike.

    I'd also like to thank @Jonathan Edwards for all his invaluable opinions, critical insight and say that he really gets all the nuances of our truly horrible disease. A disease that apparently doesn't kill, apparently does not paralyze. Apparently is not urgent.

    To the untrained eye many of us look normal, but our daily realities are very much different. Many can't drive anymore, many can't leave their homes, or their beds and sofas, many can't stand up for a decent amount of time, many can't shower as frequently as they used to, many can't do all the things that normal human beings do. Some people with other very serious chronic diseases are able to do what PWME can't do.

    Please keep up the urgent and much needed work.
     
    LaPerla, rosie26, RL_sparky and 2 others like this.
  18. deleder2k

    deleder2k Senior Member

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    Last edited: Jul 17, 2014
    vli, catly, Sasha and 1 other person like this.
  19. NK17

    NK17 Senior Member

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    Totally agree with you @deleder2k .
    We have a serious medical problem that mainly impacts the quality of life.
    One day we'll also have serious studies, done on strict cohorts of PWME, that will show that the quantity, or length of life span, can be impacted too.
     
    vli likes this.
  20. DanielBR

    DanielBR Senior Member

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    @Jonathan Edwards Thank you so much for the incredible insight and information about plasma exchange. I am thrilled to hear, that Fluge and Mella thought about the possibility of eliminating antibodies in order to speed things up. Hopefully, they will get better data.
    I remember, that MS patients sometimes get a round of plasma exchange during an active attack, if the high dose corticosteroid treatment fails to stop new symptoms.

    A month ago I read a story about a ME patient in a German magazine, who had a benign brain tumor (I think vestibular schwannoma). Preparing the surgery, the doctors gave her cortisone infusions. She reported afterwards a relief of all her symptoms and never feeling better than after her brain surgery! The improvement lasted one month. I found the story quite remarkable and similar to the first patient of Fluge and Mella. Sadly she didn't get further treatment.

    @deleder2k Did you try the Cialis pills and the betablocker? Arginine could help as well, but oral arginine is not very efficient in rising blood levels.
     

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