August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Experiences

Discussion in 'General ME/CFS Discussion' started by Kaja, Sep 16, 2018 at 6:56 AM.

  1. Kaja

    Kaja

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    I was diagnosed with M.E. in 2017 after years of symptoms. I had to take a fact sheet to my G.P and say look at this, you've looked at everything else now look at this! This triggered the CBT sessions on how to manage M.E. which to an extent is helpful as I've learnt to listen to my body but it's difficult and frustrating.

    I'm lucky I'm NOT severley ill, I still manage to work albeit with difficulty and can still have the odd night out, but the repercussions last for days.

    The one thing I do struggle with and I'm curious as to whether it's just me or a part of M.E that everybody experiences. A common cold or 24 hour bug will knock me off my feet, I'm bed bound but these things are so trivial in reality I find myself getting upset frustrated.

    I'm fortunate I have a supportive husband but sometimes he does struggle to understand

     
    Last edited by a moderator: Sep 16, 2018 at 8:33 PM
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  2. Wishful

    Wishful Senior Member

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    Viral infections cause my ME symptoms to greatly increase. It's very similar to, possibly identical to, PEM. I've only experienced a couple of viral infections since developing ME in 2001, but they sure felt nasty. I think IFN-g was a primary cause of the increase in severity, but that's just a guess.
     
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  3. Kaja

    Kaja

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    Thanks
     
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  4. Learner1

    Learner1 Forum Support Assistant

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    Why would IFN-g be a cause?
     
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  5. Wishful

    Wishful Senior Member

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    IFN-g and tryptophan have the same effect (increased symptoms) when either is elevated, so I believe that kynurenines are likely responsible for the effect. IFN-g triggers indole oxidase, which converts TRP to KYN. Physical exertion that damages muscles causes an increase in IFN-g 24 hrs later, raising TRP->KYN conversion, which certainly fits as a cause of my physically-induced PEM. This kynurenine hypothesis fits my observations really well, and I haven't found any counterevidence for it, so it's still my favourite hypothesis.
     
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  6. Learner1

    Learner1 Forum Support Assistant

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  7. taniaaust1

    taniaaust1 Senior Member

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    You probably get so sick after slight infections due to the ME/CFS. Some with it dont seem to get colds with it while others are severely knocked about whenever they get one. For you it would be very important to completely rest up whenever you feel a cold or something like that start to come on. Extra resting before it hits hard
     
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  8. CreativeB

    CreativeB Senior Member

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    This sounds similar to me. I'd say I have mild ME/CFS and do still work. I don't know if that's a common theme, but I too find I'm floored with the slightest illness.

    I came down with a virus/sore throat last Monday and am still struggling a lot. I rest when I can, but I haven't called in sick
     
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  9. Kaja

    Kaja

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    Thank you
     
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  10. Kaja

    Kaja

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    Do you feel like you can't call in sick? I really don't want to and as manager it's alot more difficult for me to do so.
     
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  11. CreativeB

    CreativeB Senior Member

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    Yes. That's exactly how I feel. My Line Manager and HR have been great, but I don't want to take time off. I also had agreed to help out by covering a class tonight and I have teaching tomorrow, so don't want to let people down - especially the students.

    I have a class-free day on Wednesday, so going to ask to work from home. I work from home on Thursdays so that would give me two less stressful days
     
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  12. Kaja

    Kaja

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    I'm managing with just having the weekends off, although it seems to be getting harder , if I'm on call it's difficult because I don't get that break. Some days I just want to shut off every little noise is to much.
     
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  13. Wishful

    Wishful Senior Member

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    I followed a link from Learner1's second link and found this interesting conclusion:

    "Surplus administration of vitamins did not elicit any beneficial effects on L-tryptophan metabolism. Whether a mineral surplus influences L-tryptophan metabolism is still not established. It seems that cofactor deficiencies influence the KP far more than surpluses."

    So, taking supplements not only may not help with some deficiency conditions, it also means that lack of response doesn't mean that you aren't deficient in something. That makes home experimentation results a bit less useful. :grumpy:
     
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  14. CreativeB

    CreativeB Senior Member

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    That can be tough. For the most part I have a clear timetable and can plan my days. But I spend most of the weekend sleeping or resting. It feels sometimes that I'm crawling from one today to the next. I did attend a few counselling sessions to think about how I manage my workload/the students. Early days but I'm hoping it might help. I can only Imagine how hard it must be if you're constantly in class.

    Do you teach children? I'm glad that I work with adults/post-compulsory education
     
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  15. Mary

    Mary Moderator

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    I've found home experimentation to be very useful on several occasions. It's not science of course, but it is empirical evidence. What you quoted above says that the administration of vitamins did not elicit a beneficial effect on l-tryptophan metabolism but it didn't mention amino acids.

    How about BCAAS? They have been proven to affect l-tryptophan metabolism. See, e.g., https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/ and https://www.ncbi.nlm.nih.gov/pubmed/16424144

    @Learner1 mentions that BCAA and glutathione depletion cause PEM for her. BCAAs don't prevent PEM for me, but they have cut my PEM recovery time in half, which is huge.
     
  16. Wishful

    Wishful Senior Member

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    I didn't say that home experimentation isn't useful. I've found it very useful, even life-saving. My comment was that negative results aren't useful for disproving a theory, because swallowing a tablet doesn't automatically transport the chemical into the specific place in the body where it might be deficient. If, for example, the theory is that our mitochondria are deficient in Ca, taking a CaCO3 tablet and not noticing a reduction in symptoms, doesn't mean that the theory is flawed. It just means that the body is too complex for such a simple test.
     

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