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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Similarities between ME/CFS and MS

Discussion in 'Latest ME/CFS Research' started by Sparrowhawk, Sep 18, 2013.

  1. xchocoholic

    xchocoholic Senior Member

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    Not that I tried keeping up with this aspect of gluten intolerance but are there studies on this ?

    I've seen that Lymies can become gluten intolerant and assumed this just meant that their immune systems couldn't handle gluten or other non natural foods.

    From what I've seen other intolerances are "normal" for celiacs too.

    Damaged gut = weakened immune system = intolerances ?

    Regardless of how the gut gets damaged.

    ? ... x
     
  2. xchocoholic

    xchocoholic Senior Member

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    With lesions on my brain, chronic muscle spasms and a positive rhomberg I'm not sure how I got the me/cfs dx by a cfs researcher.

    I thought it was due to being positive for multiple viruses. The test for these viruses was called the cfs panel back when I had it. My first was in 1990-2? and my last cfs panel was 2006?

    I was told extreme positives on this test represent an upregulated immune system.
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    What is going on is proving the difference between MS and ME.
    research is going on in australia with this. low nk function is common in MS, R-arthritis as well as ME. They are now looking further into the nk function to distinguish between these 3, nk bright cells may be the distinguishing factor.
    Sorry if i have brought this up before but think its important to mention this. Maybe those who research MS may read this and think twice about me/cfs not being serious. I think the research on both these disorders could help each other as well??
     
    rosie26 and Valentijn like this.
  4. Mij

    Mij Senior Member

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    @heapsreal

    Yes I agree that research on both can help each other, but as far as treatment recommendations I feel it will be very different.
     
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    whats interesting is i was hovering around an MS site18months ago?? and there were a few who were improving on antivirals. there was some discussion on whether MS is an auto immune illness or infection/ebv or combination??

    I would like to have access to the interferon type treatments MS people have, i think this could help some cfs/me people deal with infections.

    One strange thing i felt being on this MS forum was that the people with MS didnt seem to know that much about their illness physiologically compared to ME people, i could be wrong. But also us cfs/me have to do our own research i guess or else there would be know one to teach our docs about ME.

    I wouldnt be suprised if MS is a sub set of ME or vice versa.
     
    xchocoholic likes this.
  6. Mij

    Mij Senior Member

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    Actually if you read different forums concerning neurological diseases in general there are some who do benefit from anti/viral/bacterial treatments. I watched a program a few years ago about a Canadian doctor who was saying that they found c.pneumoniae in autopsied Alzheimer brains. They saw improvements by treating Alzheimers with abx and high dose vitamin C.

    Well bring on the biomarkers! :)
     
    heapsreal likes this.
  7. stephano75

    stephano75

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    Ok- just to be clear, I am not talking about 'piggybacking to get recognized' (what does it matter what some people on an MS forum say!!??) or 'ms-light' or tangential questions about the evolution of the human diet. (I could refer to the health benefits of a Mediterranean diet, which has been clearly and repeatedly established in epidemiological studies...but again this is not what I am talking about.)

    To try one more time....I am talking about whether this particular treatment modality for MS could be useful for ME/CFS due to its effects on the immune system. There are strong theories about ME/CFS being an autoimmune condition or involving an inappropriately activated immune system, which is also the case in MS. The main idea of the Jelinek diet is to substantially increase Omega 3 intake and reduce/eliminate saturated fats. This is not about some generalised idea of 'a healthy diet' but rather because this change, according to the (very credible) evidence put forth, can move the prevailing immune response away from the TH1 inflammatory/ over-active state to a TH2 more suppressed state. IE- Immune chemistry is strongly influenced by fat intake, and high Omega 3 intake (in the absence of saturated fats) results in chemicals which suppress the inflammatory state.

    Based on the success this approach appears to have had for MS sufferers, and the fact that reference is also made in the book to other auto-immune conditions, it occurs to me this could be worth trying for ME/CFS. I have no problem with people suggesting this might not be a useful approach- it's just that the stuff people have brought up so far in no way addresses what I am talking about!! None of the above is saying ME/CFS isn't a serious debilitating condition in its own right- as a sufferer for 17 years, I am acutely aware of that fact.
     
  8. Elph68

    Elph68 Senior Member

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    Hi x

    I will find it ... I do have the study ... my memory is stretching but i recall it being something to do with something in the gut lining resembles gluten .... i will find it .....
     
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  9. WoolPippi

    WoolPippi Senior Member

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    this lurker/reader hears you, I'm sure there are more :)

    In the 20th century one of the earliest research on fats was done by dr. Budwig, she eventually devised a protocol for cancer patients that favoured flaxseed oil above all. She was a fat-specialist. She found fats are absorbed better when they are in suspension. So her patients mixed up their oils with cottage cheese into a very airy cream.

    She also found out how fast fats, when ingested, get absorbed and reach the skin. Within hours, for unsaturated fats.

    From other research I know fats bypass the liver when ingested. They go straight from the gut to the lymph system. Which is where the battle against both cancer and auto-immune is mounted.

    Short fatty chains do different things in cell (membranes) than long fatty chains. (I know nothing yet of the specific pathways in cells)

    So yeah, I'd like to converse about this more!

    PS.
    I've been on a high saturated fat diet for 4 years now and happy and healthier for it. Before that I tried the Budwig protocol but you have to grind your own flaxseed because processed vegetable oils alter so quickly.
    My gut couldn't handle all the flaxseed and vegetables. And mixing the oil and cheese fast enough to get the oil suspended is not easy. A handheld mixer was not enough.
     
  10. Elph68

    Elph68 Senior Member

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    There is a classic case where an isolated island, that never previously had MS, was inhabited by soldiers during WWII .... after they left there was practically an epidemic .....

    Maybe someone knows more about that story??
     
  11. Elph68

    Elph68 Senior Member

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    Hi x,

    They are starting to research this ....

    http://link.springer.com/article/10.1007/s11940-005-0011-5#page-1

    Wikki has a lot of references to it ...

    http://en.wikipedia.org/wiki/Immunoglobulin_A

    And I know bioscreen (Melbourne University) has been working on this ....
     
    xchocoholic likes this.
  12. alex3619

    alex3619 Senior Member

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    Or at different parts of a spectrum of the same disorder. Or overlapping disorders. I keep thinking about this.
     
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