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Similarities between ME/CFS and MS

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

  1. alex3619

    alex3619 Senior Member

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    There was an old thread on here somewhere, iirc, that talks about MS and ME. There was a quote from an MS specialist who also treats ME (or did he call it CFS, I can't recall). Apparently some patients have very distinct ME. Some have very distinct MS. However in between those the majority of patients look like having some kind of blend. The implication here was that ME and MS might be two ends of a spectrum of disease, but he didn't know that for sure.
    allyann, xchocoholic, SOC and 3 others like this.
  2. Fogbuster

    Fogbuster Senior Member

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    What I find bizarre is that when I smoke a cigarette I get such a severe immune reaction, much more than any problematic food, and the reaction is immediate. It puts my body into hyper overdrive mode eg severe shaking, fatigue, feeling on edge, increased fogginess. I thought your only sensitive to smoke when you have MS? I was diagnosed with CFS/ME btw..
  3. alex3619

    alex3619 Senior Member

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    ME is probably a disease of abnormal blood vessel regulation. Tobacco contains nicotine, a vasoconstrictor. You cut off your blood supply. I don't think its an immune response, but it is a rapid response.

    I was once under a CFS doc who had moderate success in treatment, except in one group. No smoker ever responded to treatment. So the first thing he did was to get them to quit.
  4. sregan

    sregan Senior Member

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    I was wondering if this is something I might get checked for. But if I have it will having a diagnosis help me any? It might help explain to my employer why my mind has been slipping and my work output is lower than before. But is there any upside except now that I have a pre-existing condition?
  5. Antares in NYC

    Antares in NYC Senior Member

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    I have a close friend with MS, and the guy seems to be better off than me, by a mile. He has not experienced any major cognitive issues yet, while I often forget names of my own family members. I know he's going through a personal hell, his treatment is awful, and as the illness progresses, his circumstances get considerably worse. I know MS is hell. But it feels like ME causes a lot of the damage and physical degeneration "up front". With MS, that physical degeneration is progressive and irreversible.

    In MS the nerve degeneration gets progressively worse over time, as the demyelination process continues. With ME it feels like the up-front mess happens at once after the first onset, it stays at a level for about 10 years, and then it gets slowly worse and worse.

    I think it's a huge mistake to call ME/CFS "MS light". It's as bad as calling it "CFS", frankly. First of all, it's turns out that both are more similar than researchers first thought (and I bet that ME will be considered a neuro-immune disease within a few years). And although MS has a higher morbidity, ME leaves people ravaged and disabled. But let's not forget the life expectancy for ME/CFS sufferers is 55 years of age (a combination of high suicide rates, heart failure, and cancer).

    Our illness is not just similar to MS; it's just as disabling and messed up.
    Last edited: Nov 25, 2013
  6. DadgummedShango

    DadgummedShango

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    @alex3619 is there any possibility you might remember the specialist's name or details of the post to identify it by?
  7. alex3619

    alex3619 Senior Member

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    Possible, yes. Likely, no. Many would have read this. One of them might recall it. It was years ago.
    xchocoholic likes this.
  8. bertiedog

    bertiedog Senior Member

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    Last year I was tested for Chlamydia Pneumonia antibodies but it came back negative so as usual we are not all the same.

    My understanding is that with these chronic illnesses there are many similarities in the way the immune system is malfunctioning plus we are all likely to have issues with heavy metals and leaky gut which will negatively affect the mitochondria. All these illnesses will involve oxidative stress and all these illnesses will negatively effect the hormones and probably one needs to address all these aspects if one stands any chance of improvement.

    I have done this to some degree and I can manage between 5000 and 6000 steps daily but without taking lots of daily supplements plus hormones no way could I lead the life I do. However I still have something very wrong with my immune system and I am very interested in the autoimmune theory. The last change I have made is to go completely gluten-free and will be interested to see if I can get some positive changes to the leaky gut I have (despite a strict diet and lots of beneficial herbs and probiotics).

    Pam
  9. DadgummedShango

    DadgummedShango

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    You still get points for having my favourite Einstein photo as your profile pic ;)
    alex3619 likes this.
  10. stephano75

    stephano75

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    I have just read the excellent book by Professor George Jelinek "Overcoming Multiple Sclerosis- an evidence based guide to recovery." The recommendations in the book come across as very credible, especially given the amount of evidence marshalled to support them. I was just wondering if anyone has adopted Jelinek's protocol to try and improve their ME/CFS, given the apparent similarities of the conditions? This is something I'm about to do (I have suffered from ME/CFS for 17 years now).
  11. Mij

    Mij Senior Member

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    I would skip his recommendations for exercise protocol if you decide to go this route, "the recommendation is for at least 30 minutes of vigorous exercise 5 days a week, for the maximal benefit".
    http://www.overcomingmultiplesclerosis.org/Recovery-Program/Exercise/

    ME and MS are distinctively different in this regard. ME is not "MS light", not by a long shot, sorry. MS patient pts do benefit from aerobic exercise, aerobic exercise has shown to decrease blood flow in brains of ME pts.
    xchocoholic, Iquitos, SOC and 2 others like this.
  12. Elph68

    Elph68 Senior Member

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    Hi xchocoholic,

    streptococcus causes IgA antibodies which result in gluten intolerence

    Cheers.
  13. Elph68

    Elph68 Senior Member

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    Hi sregan,

    photophobia, along with the other symptoms you describe, is a classic symptom of a streptococcus infection.

    cheers.
  14. stephano75

    stephano75

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    Thanks Mij. Ummm- I'm a little confused by your response. At no point did I suggest ME is "MS light" or anything of the sort, so perhaps it wasn't necessary to respond in a terse/defensive fashion?! I know this "Ms Light" concept has been referred to in earlier posts, but I am not your straw man!! :)

    I referred to 'apparent similarities' in the two conditions, which is consistent with the title of this thread. Apparent similarities (obviously) doesn't mean there aren't differences. Apart from the articles I've read re the apparent similarities, I also attended a presentation by Sonya Marshall-Gradisnik in October last year where she stated her research is finding ME/CFS is looking more and more like an auto-immune condition, and like multiple sclerosis in particular. This led me to the Jelinek book, as I was interested and had heard good things about it.

    OK- I totally agree that black and white exercise recommendations such as 30 minutes 5 times a week are not applicable to ME sufferers. (Although I think we would agree that strictly individually tailored, gentle exercise can be good for us- I find yoga helpful, for example- probably because it helps with my POTS). However, exercise is hardly the focus of the Jelinek book. It's a peripheral thing and gets just a small mention- just a few pages on it in a 330 page book and he notes that those more disabled can look at hydrotherapy or modified gym programs.

    So- leaving aside exercise- his primary focus (and what I was talking about when asking the question in my post) is on lifestyle changes, especially dietary that can (according to the evidence he presents) fundamentally alter the immune response/functioning of the immune system. The changes include adopting a plant-based + seafood diet, significantly increasing intake of Omega 3 fatty acids, completely eliminating saturated fats, increasing Vitamin D, meditation etc.

    The evidence concerning the role of fatty acids and vitamin D in the immune response is very, very interesting. Also- the contention that supplementing with fish oil etc is useless if the patient continues to eat foods containing saturated fats. Dairy products and all meat (except seafood) is a big no-no. At any rate- the RCT and epidemiological evidence presented is very interesting. Of course, it's all for MS sufferers.....but there is regular mention (in general terms) of "other auto-immune conditions"....which made me wonder if anyone with ME had adopted this strict diet.

    If you haven't read it, I highly recommend- one of the best-referenced books you'll come across...which is to be expected as Jelinek, apart from being an emergency physician and MS sufferer, was editor of a medical journal for many years.

    Cheers,
    Stephen
  15. Elph68

    Elph68 Senior Member

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    Hi Stephen,

    the only problem with what you are proposing is that the diet you mention doesn't sit with our evolutionary path .... High fat and high protein diets with minimal vegetables and fruits is how we evolved ..... It is only since we became 'civilized' that grains and vegetables became a staple .....

    Not everyone evolved next to the ocean .....
  16. Mij

    Mij Senior Member

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    Hi Elph,

    To add to your post, it is my understanding that people with MS do not have many gut issues except constipation or mobility issues.. Gut issues are huge with ME pts.

    The website also states, "Scientists are now proposing that vegan diets with additional fish oil (plus vitamin D supplementation), through their immune system effects, can be used to prevent the onset of MS in susceptible people."

    I would be reluctant to incorporate Jelinks diet of only plant based. I feel much much better eating a grass fed meat based diet.
  17. Mij

    Mij Senior Member

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    @stephano75

    I'm sure Jenlink's book is a good read, but I won' be buying it :)
  18. Elph68

    Elph68 Senior Member

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    Hi Mij,

    I am sure you are right, and I am the same .... those of us of anglo saxon descent evolved on meat, fish, eggs a few seasonal vegetables/plants and very little fruit .....
  19. Firestormm

    Firestormm Guest

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    Unless you lived by the sea or a river! :)
  20. Mij

    Mij Senior Member

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    I did a little reading on the MS forums and read several posts on how they don't want to be associated with CFS or Fibro because their illness much more serious and affects the CNS pathway. huh?

    We have a distinctive serious debilitating illness and I don't feel we need to piggy back on other illnesses to get recognized.
    Valentijn likes this.

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