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Latest model on what CFS is, and implication for treatment

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by JPV, Oct 4, 2015.

  1. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    Interesting post from Ken Lassesen's blog...
    He makes some treatment recommendations in the remaining part of the blog post.
     
    Last edited: Oct 4, 2015
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  2. minkeygirl

    minkeygirl But I Look So Good.

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    @JPV You F'ing with with my brain with your upside down "senior member" Lol
     
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  3. Bansaw

    Bansaw Senior Member

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    The article goes on to suggest a protocol for shifting gut bacteria to achieve remission.
    I've always believed it to be gut-related (at least for me). Trauma + infection(Typhus) + antibiotics = CFS for me, and I am convinced that restoring good gut balance is essential.
    I sense that vitamins, minerals are not being extracted from my food and thats borne out by my mineral test results.

    She mentions fasting as a way of starving the unwanted bacteria. Thats hard. I tried a two-day fast last week and it was hard on my body, keytones, got very cold. I wonder if there is a certain diet that encourages the right gut microbiome?

    "Lactobacillus acidophilus"
    Darn, so I guess thats my Kefir out then? And dairy products to be avoided?
     
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  4. Gondwanaland

    Gondwanaland Senior Member

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    Do not avoid food that makes you feel good just for a principle. I went to hell for going dairy free. I definetly can't get enough calcium out of vegetables - probably the same issues as you mentioned -
    much better now eating dairy again (no milk though)
     
    Last edited: Oct 4, 2015
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  5. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    Yes, very good advice. If there's one thing we should all be aware of by now, it's that our condition is comprised of numerous different subgroups which don't necessarily respond to overlapping treatments.
     
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  6. helen1

    helen1 Senior Member

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  7. alex3619

    alex3619 Senior Member

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    Latest model? Latest version of an extremely old idea maybe. I recall discussing this many times.

    The evidence does not stack up.

    My own model, circa 1998-9, was also a hypoxia model, though via a different mechanism.

    Lactic acidosis, when chronic, is fatal. There is a shift in oxygen dissociation, followed by death. Very low levels of lactic acid are metabolized in most cases very rapidly. I have yet to see convincing evidence that we have that problem.

    We do have an issue with lactic acid clearance from muscle etc. We do make too much lactic acid during activity. There is a claim, and I am still waiting for Julia Newton to publish this (or did I miss it?) that we are alkaline at rest. In other words, we overcompensate for excess lactic acid.

    One implication of this might be that pushing an ME patient into overactivity, constantly, could result in lactic acidosis and death.

    Its also implied by Julia Newton's research with muscle tissue removed from the body that this problem continues. In the absence of gut bacteria. In adequate oxygen.

    What is more likely from a shift in gut bacteria, if that is a cause, is that it causes either mitochondrial damage or an epigenetic shift to compensate for something.

    Similar arguments count against central models of ME, psychogenic models, and brain infection or inflammation models. They still have to account for long term changes in muscle metabolism even when removed from the body.

    That does not mean that lactic acid is not an important part of the problem. Its just not the whole problem, unless there is something important missing.
     
    Last edited: Oct 5, 2015
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  8. bsw

    bsw w/r/t

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    I recently found out that low stomach acid (or Hypochlorhydria) is common among CFS sufferers, people with celiac or gluten intolerance and other illnesses. (Keep in mind that the only source I could find for it being common among CFS sufferers was on Sarah Myhill's site, so take it with a grain of salt.)
    Finding out low stomach acid is common among CFS sufferers was extremely important as it explained why I felt so much better in the morning before eating. It also explained the bizarre stomach upsets I was constantly having and the constant constipation.

    I think that failure to properly absorb nutrients is the essential problem with CFS. Once you fix that, everything else becomes much easier.
     
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  9. dannybex

    dannybex Senior Member

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    I just want to put in a good word for Ken Lassesen. I met him in 2005 when I joined the local support group, and can testify that he is a man FULL of energy, and a really nice guy. You may not agree with his various protocols (and I don't agree w/everything either -- as we're all different), but I can assure you, he's the real deal.

    The last time I saw him in person was probably fall 2011, when we agreed to meet for dinner. He had walked up the hill from Amazon -- probably a 4-5 mile walk -- and was ready to walk another six-seven blocks up to the restaurant until I told him I couldn't do it and we'd have to take a cab.

    And while he relapsed in the spring of 2012 (complete with abnormal spect scans), he recovered again (or went into remission) in about 8 months and went back to work, full of energy in his mid-60's, but also fully cognizant that too many stressors could cause another relapse.
     
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  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I do not doubt that Ken Lassessen is a really nice guy but what is quoted from the blog makes no scientific sense. It is just bits of science ideas all muddled up with no understanding of what they actually mean. Science does not work by seeing the same word in two sentences and saying 'aha that must be it'! You actually need to understand the processes involved.
     
  11. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    I should mention that he suffers from ME/CFS and has put himself into remission at least 2 times. So he has a lot of n=1 experience to back up his theories, which actually counts for a lot in my book.

    No offense, but you guys don't even seem to understand the mechanism behind why Rituximab is effective in some patients. How does that square with the "need to understand the processes involved"? If something works, does it really matter if it's supported by scientific evidence? Seems like most of the progress that patients have made with this illness, has been by trial and error n=1 experiments anyway. Science and medicine have only been of marginal help as far as I'm concerned.
     
    Last edited: Oct 5, 2015
  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    At least we know that rituximab removes B cells and that if it does produce a response that is likely to be the way it does it! We understand a lot about how B cells are made, what they do and how long they live etc. This lactic acid stuff does not even join up at a basic biochamical level. There is confusion between lactic acidaemia (high lactate) and acidosis, which is then muddled with respiratory alkalosis from overbreathing and again muddled with lactate metabolism in bacteria in the gut which as far as I can work out has nothing to do with lactate in muscle and exhaustion at all.

    So the difference is that for rituximab we are using what is known in science as a basis for understanding mechanisms, but what is being used here is not what is known in science, just adding together sentences with the same words in to be honest.

    The problem with 'if something works' is that we have no idea what it was that worked. If I think bacon fat is bad for my heart I might get better from not eating bacon - but because I am not eating so much salt and my blood pressure improves. And there are all sorts of versions of the placebo effect where something works because cortisol levels go up a bit or something like that completely unrelated to what is being used as the treatment. N=1 does not back up any theories, it just backs up what happened at that time. And even if it might suggest that if you do the same thing you might get the same result another time but that has nothing to do with theorising, it is just an evidence base - those two often get confused.

    To test a theory you have to make predictions about steps along the way that you could test with blood samples or some such. And the further problem with the lactate theory here is so garbled that one could not actually predict anything from it. The biochemistry does not actually follow real biochemistry. With respect there is all the difference in the world between this and what the Norwegians are doing. This is a bit like playing Scrabble and making up words to fit the letters you have on your rack. You are not really playing Scrabble.
     
  13. Beyond

    Beyond Juice Me Up, Scotty!!!

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    Looks like thai, mongolian or something.
     
  14. ukxmrv

    ukxmrv Senior Member

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    For me personally I have a lot of problems with accepting that gut bacteria is the cause of my ME. When the disease struck it was an acute onset upper respiratory tract / serious flu. There were no gut symptoms.

    I didn't get any gut problems until after the rounds of antibiotics to fight the repeated tonsillitis and other infections after that ME onset in the first 2 years . Then a course of antidepressants (supposedly to help pain and sleep - but they didn't) caused new stomach problems.

    Fasting makes me much worse and doesn't provide any short term relief
     
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  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The reply to a question on the blog even explains how rituximab works! It reminds me of a five year old kid wearing a bow tie and a white coat and mad scientist glasses explaining how Martians fly their flying saucers through wormholes using superconductivity. It would do well for a Monty Python sketch. I am sorry to be so snooty but it would be nice to think that stuff that gets aired on PR made at least some sort of sense and I would hate to think that any patient took this seriously. I don't mind magic. If I was ill I might well kiss the Madonna of the Rosary. But science has to be science to be science and this isn't.
     
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  16. Beagle

    Beagle

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    Are there any layman's guides to designing better experiments? I enjoy experimenting on myself but I'm aware how worthless the results of trying something are, due to the placebo effect mostly, and because my knowledge of biochemistry is lacking (mostly gleaned from this forum, synthesising different viewpoints until one pov seems common).

    It'd be great if I could turn this hobby into something for the greater good.
     
  17. Effi

    Effi Senior Member

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    hi @Beagle
    there's a group of people on PR talking about possibly doing an informal study of blood lactate levels, using a lactate meter at home and then gathering everyone's data. For more info see this thread:
    http://forums.phoenixrising.me/inde...-study-to-measure-blood-lactate-levels.40152/
     
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  18. knackers323

    knackers323 Senior Member

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    @bsw what do you mean by the myhill thing? Is she thought of a bit of a quack?
     
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