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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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A LOT of totally incorrect/wrong information and advice given

Discussion in 'General ME/CFS Discussion' started by leokitten, Oct 18, 2013.

  1. Sing

    Sing Senior Member

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    There ought to be a Warren Commission for malpractice, from govt agencies to individual doctors, for PWME.

    I had forgotten about chlorella. I had a bad reaction to it, a long day of vomiting, followed by a downturn in health. This was years ago now and I don't remember details. Some things aren't safe to take even once.
  2. Izola

    Izola Senior Member

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    Oh man. For sick, tired, foggy people, you guys are Good!! Forgot to do my likes. I'll do them when I wake up next week. Izola :thumbsup:
    Last edited: Nov 13, 2013
    Sing likes this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    We look pretty good when one sees what we have typed. Whats not seen is the procrastination, the rereading and fixing mistakes before we push post.
  4. Izola

    Izola Senior Member

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    Heapsreal: Thanks for the post & info. I tried responding but when I sent it, it disappeared. ?? I, too, have to type & constantly rewrite and I make more mistake than the end result. I call it typing backwards. Or chasing coherency. Its a pain. And now I up to my limit, So happy to have met you all. Izola
    heapsreal likes this.
  5. EMilo

    EMilo Elizabethmilo.com

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    Really stupid question, but what sort of doctor would run these tests (if there are no ME /CFS experts nearby) and what exact tests are you talking about?
  6. SOC

    SOC Moderator and Senior Member

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    My opinion is that such testing needs to be done by an ME/CFS expert in order to get the right tests and have them properly evaluated. Most of us are nowhere near one of those specialists. Fortunately, many of our specialists are willing to see a patient once or twice a year and do phone appointments in between.

    My daughter and I travel 1300 miles to see a specialist who does viral and immune testing and does a wonderful job improving our quality of life. After wasting years with local doctors who did more harm than good, giving us bad information, and harmful treatment, we find it well worth the travel to see ME/CFS specialists. It's not easy, but we plan carefully and travel intelligently for people with ME/CFS.
    EMilo, helen1 and rosie26 like this.
  7. EMilo

    EMilo Elizabethmilo.com

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    @SOC this was so helpful, thank you. I had pretty much ruled out traveling to see someone, but I have now spent 26 months dealing with doctors that can't help and getting worse in the process. I am so scared, I've never done ANY treatment and now is the time that I might make some recovery... I have no idea who I'd travel to see because I am in Washington state and there seems to be no one near. If anyone has any advice on how I would go about choosing, I would love it. Someone said I could see Dr. KDM in Nevada, I think? The more I research, the more I realise I know nothing.
  8. alex3619

    alex3619 Senior Member

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    I also reacted badly to chlorella. It contains omega-6 polyunsaturated fats which can be pro-inflammatory, and it also contains lipopolysaccharide, a bacterial toxin many with ME have too much of in their blood. So some of us will react badly to it until we reach some level of good recovery.

    I do think there needs to be organized problem reporting systems for natural substances, but this should also be the case for psychopsychiatry.
    Sing likes this.
  9. alex3619

    alex3619 Senior Member

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    I have to edit almost every post, sometimes ten or twenty times if its a long post. Much of that is typos, grammar etc,. although I don't see some of that till much later. Some is clarification. Some is adding extra thoughts, examples or links. Every now and again though I type something wrong, go back and ask myself "how could I have written that?" then quickly edit it.

    It often looks good at the end, but it doesn't always start that way.
  10. SOC

    SOC Moderator and Senior Member

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    KDM is certainly a good one if you can get an appt with him. Dr Kogelnik would be another ME/CFS specialist to consider. He's in California, but I can't remember exactly where at the moment. Of course Dr Petersen would be wonderful, but he's practically impossible to get to see. There are other good ones, but they're much farther from you.

    The first thing I would do is read up on the top docs to see who seems like a good fit for you. Then I'd check to see which of them you could actually get to see within a reasonable time frame.
    EMilo likes this.
  11. Sing

    Sing Senior Member

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    I sure agree with your last point (in the last paragraph). But I also want to ask about that bacterial toxin, lipopolysaccharide, because something about that chlorella I took definitely seemed toxic to my system. Could you write something more about bacterial toxins, and how we have too many already?
  12. Sing

    Sing Senior Member

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    I am grateful for the edit option here too. Even after I have re-read and checked what I write, when I post it, I then see more errors. So being able to fix them before the final "presentation" is great.

    But speaking to people--my "live performance"--I disappoint, sadden and frustrate myself because I can't do it nearly as well as before, or as well as I could if I could "edit" that too.
    xchocoholic likes this.
  13. xchocoholic

    xchocoholic Senior Member

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    Agree with above. And then there's the edits we mean to go back to but life gets in the way.

    I honestly can't imagine anyone not verifying what they read on the internet to the best of their abilities.
    Filtering out what doesn't make sense, the rabbit holes, is tricky. Even for seasoned researchers much less Google scholars.

    Google scholars have the advantage of being able to zone into their area of interest without the noise educated
    researchers have. Makes for an interesting read on forums. : )

    tc .. x
  14. alex3619

    alex3619 Senior Member

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    Hi Sing, you are asking about something I have wanted to blog about for several years, but never have gotten around to. Another topic in the same situation is fats in diet.

    Lipopolysaccharides are bacterial toxins. Lots of bacteria etc have them. The ones in chorella are less explored I think and I have come across a claim that at least one is actually beneficial. Lipopolysaccharides are long carbohydrate chains, with fat attached at one end, viz:

    [​IMG]

    Lipopolysaccharides, often refered to as just LPS as its much easier to write, are a family of molecules found on the outside of bacteria and other microorganisms. Our immune systems are genetically primed to recognize them and become alerted to possible bacterial infection. It causes release of cytokines, and attracts immune cells.

    This should not be found in blood at all unless there is an ongoing bacterial infection, as the gut wall and the liver are supposed to detox them. LPS has been found in the blood of ME patients (De Meirleir, Maes I think). Its one of the arguments for the existence of leaky gut in ME, but its also an argument that our immune system is faulty, especially in the gut wall and liver.

    I am unsure how toxic they are in their own right, but they can get our immune system very revved up, and that can be toxic too.

    Some strains of LPS seem to be benign, and others highly virulent.

    I had a blog planned on this for last year, but almost the entirety of last year was put on hold, and I am only now getting back into things at a pace that enables me to do more stuff.
    Wayne, Sing, MeSci and 1 other person like this.
  15. Hip

    Hip Senior Member

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    Dr John Chia believes that the cause of the majority of cases of ME/CFS is enterovirus infection, and chronic enterovirus infections cannot be easily detected. Indeed most lab tests in the US that offer enterovirus blood tests are not able to detect chronic infections. Therefore, you could well have a chronic enterovirus infection, even if you lab tests show no sign of enterovirus.

    The only two ways to reliably test for chronic enterovirus are given here.

    Unless you have tested by for chronic enterovirus infection by these reliable means, you cannot say that viruses do not play a role in your ME/CFS.


    It's true that ME/CFS does appear to be triggered by non-infectious causes sometimes — causes such as mold toxin exposure, ciguatoxin exposure, radiation therapy or chemotherapy, and physical trauma (particularly a motor vehicle accident).

    And there are also known infectious causes of ME/CFS; these are: parvovirus B19, Chlamydia pneumoniae, Coxiella burnetii, and Giardia lamblia — all of which are generally treatable and curable.

    But in the majority of cases of ME/CFS with no apparent cause, a chronic enterovirus infection may well be behind it.
    Last edited: Jan 6, 2014
    Wayne likes this.
  16. alex3619

    alex3619 Senior Member

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    I would like to add to what @Hip said about enterviruses, which I agree with. Around 83% of us have detectable enteroviral infection in the gut wall. The gut is not the only place these viruses can infect.

    To add to this, one of the current hypotheses, which appears to have some validity especially in fibromyalgia, is that one or several herpes viruses might infect the vagus nerve, inducing most of our symptoms. Such viruses may also be responsible for small fiber polyneuropathy, which affects about half of all CFS patients and most fibromyalgia patients (this was not, so far as I know, studied for ME patients). Treatment for this appears to have some success, and further clinical trials are under way. The only way to be definitively sure of infection of the vagus nerve we have so far is to do a biopsy .... but you can't biopsy the main nerve that regulates our internal organs. Post autopsy samples are needed, and this is being investigated.

    One of the most powerful treatments we have is targeted antiviral therapy, shown in the research by Lerner and Montoya. Aside from Rituximab, which might have antiviral effects, the antiviral treatments appear to have the strongest impact on ME, about an order of magnitude beyond so called psychogenic treatments such as CBT and GET.
    SOC and Hip like this.
  17. xchocoholic

    xchocoholic Senior Member

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    I'm confused. I got the impression that facts about me/cfs don't exist but I see alex, hip and Mesci discussing me/cfs facts.

    I've grown to trust your opinions and that of certain other members and didn't realize you were aware of me/cfs facts.

    I'd thrown what you're calling facts into the theory category. It looks like I missed this.

    Granted my journey has been diet and supplement based in the last 8 years and that's been overwhelming for me. My first 15 years of this illness were wasted on just trying to survive.

    I 'm definitely not challenging anyone. I'm just unclear on what are cfs theories and cfs facts.

    Tc ... x
  18. alex3619

    alex3619 Senior Member

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    To sort fact from rumour, anecdote and myth you have to read the scientific papers, and watch or listen to conferences etc. Press releases are unreliable, but often interesting. Much of what is discussed here is speculation, anecdotal, or just wrong, but then that is true of any online forum.

    Also there is this. I am basing my opinions on published science and commentary from researchers and doctors. However they can be wrong. Just look at XMRV. So as the reported observations change, as the data changes, my opinion may change.

    If in doubt just ask me and I will try to find a source if I don't have one handy.

    PS Forgot one major factor - my memory is fubar, there is always I risk I will misremember something.
    Wally, Tristen, Sing and 1 other person like this.
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Throw into the equation individual differences, correct diagnosis and even amongst ME patients the infections and immune abnormalites etc can be very different too.
    xchocoholic and merylg like this.
  20. xchocoholic

    xchocoholic Senior Member

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    To the best of my abilities, I've been following cfs research for several years now including the xmrv info and for some reason concluded that most if not all research of "cfs" was flawed because specific parameters, labs, to define pwcs doesn't exist.

    In simple terms, researchers are considering all apples are red delicious and missing the differences.

    I've done the diet route (I need to be mostly paleo/low oxalate) and tried multiple supplements for rebuilding my body (probiotics, b's, etc) so I'm finally looking at viral components and the immune system. I'm a sophomore Google scholar ; )

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