A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Other diseases that causes PEM?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by tiredowl, Aug 27, 2018.

  1. tiredowl

    tiredowl

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    Norway, Scandinavia
    Anyone know about diseases that also causes PEM? I'm just curious since I see many symptoms of ME/CFS are also symptoms of low thyroid and cortisol issues.
    Just looking into other causes right now since I tested negative for all the viruses linked to ME/CFS.
    I'm just seeing something that don't quite fit. My TSH is also a bit elevated like it frequently goes from 2.0 - 4.0. Isn't that a bit high? But then I'm also quite underweight and that doesn't really fit into the clinical picture of low thyroid... This is so confusing. :(

    I'm also looking to get my genes tested right now. Hoping it can give some answers, maybe I have some mutation that could explain this unbearable fatigue. If find something I will keep updated but it's a tedious process and especially since things take me so long, I will have to wait until I have mustered up the energy.
    I looked myself in the mirror the other day, just looked so fatigued, my eyes can barely stay open. It makes me so devestated to see this worsening of symptoms again.
    Was going to see another specialist across the country, but I can't imagine traveling like this
     
    Last edited: Aug 27, 2018
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  2. Wolfcub

    Wolfcub Senior Member

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    Were you negative for ALL the viruses? Did that include all influenza viruses also?

    The reason I ask is I spent weeks trying to find out what virus I might have caught to result in months of what felt like post-viral syndrome (I have not even yet been formally diagnosed with ME/CFS.) None of them fitted.
    Then suddenly one kind of did.
    That was H1N1, the swine flu virus. Influenza A. My symptoms fitted closer with that than anything else (and believe me I checked a list as long as your arm), with the exception of fever and any noticeable respiratory things, though I did have a slightly phlegmy cough only for a couple of weeks without any feeling of chest soreness.
    But on further investigation I noted that there had been a number of afebrile cases, mostly among pediatric and geriatric patients.
    So there were obviously some variations of classic presentation.

    Of course by the time the penny started to drop it was already way too late for a nose swab, etc, and my blood work at 3 weeks in showed no signs of "infection" apparently. However a viral infection probably wouldn't have shown up in bloodwork (?)

    I also discovered that there was a connection between H1N1 and ME/CFS in many cases.
     
  3. Wishful

    Wishful Senior Member

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    My TSH has been slightly higher than that since somewhere in the first few years of my ME. I don't have the typical symptoms for hypothyroidism (comfortable room temperature for me is 12C), and T4 and T3 have no noticeable effect on how I feel. Most doctors I've been to, including endocrinologists, just say "Tsh is elevated, so it's hypothyroidism, here's a prescription for T4", and they get mad when you argue that it's something else. My theory is that ME causes elevated kynurenines, which results in elevated TSH (elevated picolinic acid -> elevated MIPS -> elevated TRH -> elevated TSH).

    While I don't respond to supplemental T4 or T3, I find that supplemental T2 or iodine (which boosts T2 production) switches me from a worse baseline state to a less severe baseline state. Continuous supplementation doesn't work for me. A single boost (100 mcg of T2 or a small droplet of tincture of iodine) every 21 days seems to reset something, and I avoid the worse symptoms for another 21 days. It's a very consistent 21 day effect.

    If your doctor tells you that 'it's just hypothyroidism' and T4 doesn't seem to help, my suggestion is to ignore him (or her) and to experiment to see what helps you. There are some members here who are quite informed about the complexity of thyroid function. They can advise you about better tests and possible treatments and supplements.

    If you have PEM, and fit the criteria for ME/CFS, I suggest that you don't wear yourself out trying to find another answer. We all want to find a magic test that will show that we have a different, treatable, disorder, but if you do have ME/CFS, you don't want to make it worse by overstressing yourself with long flights, etc. I'm optimistic about a clinical test for ME/CFS in the next few years.
     
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  4. percyval577

    percyval577 Senior Member

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    I think PEM is more and more considered to be the hallmark of the disease, but there are still different definitions around.
    To my knowledge there aren´t any strict correlations established yet which would indicate a cause or a mechanism. Therefore I doubt that any doctor could support with any clearance at this stage of knowledge - but Ron Davis said to have found something in the blood plasma that would alter white blood cells (whatever that might mean at further investigations).
    A good article to read (if you can manage at some time during the week) is Underhill 2015: Myalgic encephalomyelitis, chronic fatique sysndrom: An infectious disease. And/but it is by no means implicated that the real infectious agent must be a virus or a bacterium. - It even could be a signaling molecule, couldn´t it?

    An update on my influence. Next to manganese I have read fat and sugar to diminish gene expression of AcetylcholineEsterase. So, I avoid sugar and diminish fat. And have promising results, pointing to a furthered improvement over hopefully ... at least some time.
    Also a very very good article is: Vermeulen, Scholte et al: 2004 (unbelievable): Explatory Open Label, Randomized Study of Acetyl- and Propionylcarnetine in Chronic Fatique Syndrome.
    cf Lipkin, Hornig et al. (!!) 2018 https://www.nature.com/articles/s41598-018-28477-9 when they say that the choline-carnetine pathway would be decreased (p.6, see also p.3) - this gives a hint I think.
    greetings
     
  5. Wolfcub

    Wolfcub Senior Member

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    I feel it's possible any condition which causes chronic inflammation anywhere in the body could cause PEM or a chronic-fatigue-like condition.
     
  6. Wishful

    Wishful Senior Member

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    Does any form of chronic inflammation cause PEM? I haven't heard of any. I think if it did, we would read about it, since chronic inflammation is fairly common. No, I think PEM involves whatever feedback loop is responsible for ME/CFS. It probably involves the immune response, but also some other cellular function, likely metabolic.
     
  7. alex3619

    alex3619 Senior Member

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    There is only one disease known to include PEM, which is ME, though potentially two if you allow CFS to be included. Even MS does not have PEM. A great many diseases do have exercise intolerance though, including possibly ME. Its not the same. This question keeps coming up, but no other disease when properly tested shows signs of PEM. It could happen though. Just because we do not know of other PEM based diseases does not mean they do not exist.
     
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