ME/CFS and MS might be more similar than we thought

Discussion in 'General Discussion' started by Not dead yet!, Mar 11, 2017.

  1. Not dead yet!

    Not dead yet! Active Member

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  2. weyland

    weyland Well-Known Member

    I don't know, personally I think that ME and MS are actually opposites of each other.
     
  3. Not dead yet!

    Not dead yet! Active Member

    I'm going through old research at this point, haven't reached the new stuff but I was looking in an old book that mentioned the abandoned theory and when I looked it up, it came up with the new metareview. Interesting times for my MS friends, what with biotin and the revivification of the viral theory.

    Personally with just basic biology and chemistry in my background I've always thought autoimmune issues were some kind of virus or pathogen the body is trying to fight, but we don't know exists. My doctor said very much the same thing. He says he stays up at night worrying about the things he can't treat because we don't know.

    As a result, I think the most important self care anyone can take is immune boosting or modifying by any means that helps. I suspect we don't get that message from the "powers that be" because our immune system can be fooled and it can do harm as well as heal. In fact they tend to pooh pooh things like Vitamin C because it's too chaotic for them. IMO, I'd rather do something and feel like I'm not helpless.

    If the something has a mostly positive effect, it can help to reduce that "stress" they're also warning us about. It's magical thinking to say that you can reduce stress while doing nothing if something is wrong. You can't think your way out of a fact. Possibly the most parental attitude expressed by NIH, CDC WHO and all those big health organizations is when they tell us "we don't know what it is, but don't do anything yet because we don't know the effects of what you're doing, just wait for us to figure it out, oh and by the way, don't stress over it because that's just bad for you." Only robots could follow such instructions.

    At least for MS there are treatments and ways to track the progress of the illness, but it would be amusing to find out that they missed a viral cause for almost the same reasons they're willfully ignoring the viral cause in CFS. Eventually that pattern of behavior will be so obvious it will crumble under its own weight.

    I'm actually wondering what harm there is in telling everyone in high school bio class that 8-10% of our DNA is viral origin? I mean, who cares, right? It's not just one group of people, it's all of us. What if we all learned in HS how retroviruses work? It might lessen the panic of health policy people over releasing information. I'm not sure the panic is justified at all. Except for HIV which they resisted at first and look what they tried first... a vicious drug, AZT, probably equally deadly as the virus... except for that, they've never discussed this issue openly.

    It makes me wonder why. One possibility is that it shows that some retroviruses did escape from labs, another is that maybe it reveals that some chronic diseases do have a cause, not just a tracking mechanism and a blunt instruments treatment. Maybe something that ties these together is the fact that we can't eradicate the virus, just make it go back to "sleep." Or maybe that's the fear that drives the bad behavior in other areas. The "fear of public panic" button has been pushed, to hide the desire to sell drugs that only partially work.

    Well that's enough cynicism for today. :greedy:
     
  4. weyland

    weyland Well-Known Member

    The theoretical models for ME and MS are basically the same; autoimmune, viral, or metabolic. That's why I get cynical about ME research because they can't even figure out which way to go in MS research with tons more money than we have.

    I don't doubt that MS could be viral. The point is that the studies that have compared ME and MS show they are totally different biochemically. It appears that in MS the inflammatory response is running away, in ME it appears to be suppressed as a protective mechanism. The treatments that seem to work in MS are ones that downregulate the inflammatory response, and the treatments in ME that seem to work are those that upregulate it.
     
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  5. Not dead yet!

    Not dead yet! Active Member


    Yeah I think that makes sense actually. If (big if right now) XMRV = ME and HERV-W = MS, then HERV-W is endogenous... it's been there for many generations. So calming the inflammation is the right thing to do. And XMRV is a new jump to humans, so it is still very nasty and very much in need of being kicked out. It will be generations before it is 'endogenous" and mostly harmless. (cue Douglas Adams joke :) ) In both cases, having a drug that forces endogenous viruses into a latent state would be useful. But first, the big health agencies have to stop ignoring the existence of these things.

    I'm actually really surprised that nobody's thought of making a general purpose "calm down the endo-v's" drug (one that forces latency). If I were cynical I'd think it was because it is economically useful to not have one. If MS has no known cause, then it's a billion dollar industry... that sort of thing.
     
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