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  1. #1
    likes this gromit's Avatar
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    Default Friend with Chronic Fatigue

    YO anybody have any experience with this?

    One of my good friends from school has been diagnosed with chronic fatigue. I think it's especially hard on her because she was formerly very active, a distance runner and competitive athlete. Now she can barely function with day to day demands.

    If I lived nearby I would do stuff to help make her life easier... grocery shopping, cleaning, whatever. But she is way on the other side of the country

    I can can tell she is bummed out about the diagnosis and I wish there were something I can do! She asked me to send her some artwork over the summer and I mailed some little paintings. And I made her a calendar for 2017 of some of the best nature photos I've taken.

    I guess my hands are kinda tied though due to distance. Anyone got any insight?
    Your kisses, sweeter than honey. But guess what, so is my money.

  2. #2
    Senior Member nonsequitur's Avatar
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    I'll take the scientific side first, then the emotional side.

    Chronic fatigue is linked to dysregulation of the gut microbiome (leading to gut inflammation). That's also why it's often co-morbid with IBDs. I'm not sure if your friend also has IBDs, but the first step in helping to alleviate that would be to go on a low FODMAP diet.

    Monash uni has a good resource (including an app) for people who are unfamiliar with it: Low FODMAP diet for Irritable Bowel Syndrome

    (No, I don't work at/for Monash and declare no competing interests )

    Typically inflammation spreads through the gut/brain axis, leading to other symptoms such as depression, anxiety etc. I'd suggest to emotionally provide support by checking in with her, but it's crucial to get the inflammation to calm down - it's very much a physical phenomenon. I'm not sure if her gut can tolerate it yet, but typically, the best way to do that is to keep to a high fiber, low FODMAP diet for a while. Since she used to be a competitive distance athlete, adrenal fatigue might be another factor, so it's important to be aware of the possibility.

    As inflammation in the gut spreads to the mind, it also works in the other direction. There's quite a bit of evidence that chronic stress can also trigger CFS. If she's up to it physically, you might want to suggest very easy, very relaxing yoga/stretching to her - or to do meditation exercises together, laugh about things together, etc. CFS also flares up and calms down (like any other immune condition) so it's important to figure out and avoid potential triggers for an attack - it may be possible to reduce long-term disruption to her life.

    Just some things off the top of my head.

    [standard disclaimer that I'm not a medical professional; I just have an interest in this stuff]
    "How badly did you have to break it to make it care about people so much?"
    "That didn't break it. It's what made it work."

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  3. #3
    Senior Member Beargryllz's Avatar
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    One of the interesting things about CFS is just how many etiologies have been proposed. Usually, you'll see one dominant theory and maybe a few alternatives. The alternatives are often either antiquated or pretty new, without much data to really support them.

    This is not the case here. Here, we've got a lot more etiologies proposed and none of them have any substantial evidence. We've got epstein-barr virus, all other viruses, an autoimmune-mediated response *to* a virus, an autoimmune response *without* a viral etiology, plain old depression, endocrine dysfunction, neurally-mediated hypotension, sleep hygiene, and a genetic component.

    None of these really beat out any of the others. Something like 60-70% of CFS patients meet the criteria for anxiety and/or depression. This isn't really all that useful because ~everyone with a chronic illness is depressed until proven otherwise.

    My instinct is to rule out hypothyroidism, then do a trial with prozac. All the normal rules like good night's sleep, daily exercise, diet, etc. all apply
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  4. #4
    Senior Member nonsequitur's Avatar
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    Well, it's not so long ago (around a decade) when most doctors thought that CFS was malingering.

    What's indisputable is that there is definitely an immune component that provides a link between the physical and mood symptoms. It's certainly difficult to isolate a trigger since none of the above etiologies exist in a vacuum. It's also very possible that it requires the interaction of several factors including viral infection. However, there's quite a bit of evidence that shows reduced diversity of the gut microbiome/virome in patients with CFS in combination with increase in gut/plasma inflammation markers. The same trend also been shown recently in identical twins with/without CFS. A low FODMAPs diet is also regularly used to reduce gut inflammation.

    The goal here isn't really to diagnose and treat, but more to provide support and suggestions for things that she can do from afar? I really don't think telling her friend to go on prozac is a good idea (and is probably against forum rules). Especially since all we know is what we hear 2nd hand.
    "How badly did you have to break it to make it care about people so much?"
    "That didn't break it. It's what made it work."

    "Any community that gets its laughs by pretending to be idiots will eventually be flooded by actual idiots who mistakenly believe that they're in good company." - Rene Descartes

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  5. #5
    Who Am I? Forever's Avatar
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    Hey, I know I don't have much to say but I feel for your friend and express my sorrow, I used to be a very ambitious long distance runner too.
    F O R E V E R


    When it matters, everyone's the same.



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  6. #6
    militat omnis amans magpie's Avatar
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    CFS has been linked to dysautonomia as well. If I didn't have diagnoses that explain the root cause of my problems as genetic, I'd probably be diagnosed with CFS because I fit basically all the symptoms. CFS is sort of just a placeholder diagnosis when no one knows what's wrong with you. I'd be pissed if someone diagnosed me with it and then was just like, "well, okay, now we don't have to keep looking into things."

    This isn't really advice, sorry, it's just a continuation of the what is CFS conversation.

    In terms of advice though, I think you're doing a good job as a friend so far. I think just offering to listen to her if she needs to vent would be really nice as well.
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  7. #7
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    Default

    Thanks guys! Yeah it doesn't seem like she's really interested in suggestions as to what is causing it. She already has been working with her MD to rule out anything systemic/ hormonal (eg adrenal). As for the depression, if anything, I think not being able to do the things she loves and which give her life meaning may be giving her some of those symptoms.

    Once I get a few more paychecks under my belt maybe I'll see how she would feel if I fly out to visit her!
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  8. #8
    deplorable basketcase Tellenbach's Avatar
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    I read "Cure: A Journey Into the Science of Mind Over Body" about a month ago. There's an interesting theory in the book that CFS might be caused by the brain's faulty setting of a limiter (in the form of fatigue) in response to a viral or bacterial infection. The theorist thinks that fatigue is used by the brain to prevent one from overexerting the body to the point of damaging it. In the case of CFS, the fatigue limiter is set but isn't reset when the infection is cleared. To reset the limiter, the author cites one case where a lady with CFS slowly (over a period of months) increases the level of physical activity. By increasing the level of activity, the brain resets the limiter bit by bit so that eventually, the level of fatigue is back to normal levels.

    So basically, start walking 10 steps day 1, 12 steps day 2, 14 steps day 3, etc until your energy levels are back to normal.
    Liberty means the ability to say "No thanks, perhaps later. I'm gonna go take a nap now."

  9. #9
    Senior Member nonsequitur's Avatar
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    For those claiming that "daily exercise" helps CFS: How bad science misled chronic fatigue syndrome patients

    On the same subject, this time reported by undark - this could be unpacked further with problems with the medical establishment: For Chronic Fatigue Syndrome Sufferers, a Dubious Treatment Unravels
    "How badly did you have to break it to make it care about people so much?"
    "That didn't break it. It's what made it work."

    "Any community that gets its laughs by pretending to be idiots will eventually be flooded by actual idiots who mistakenly believe that they're in good company." - Rene Descartes

    5w6 1w9 2w1, sp/so

  10. #10
    deplorable basketcase Tellenbach's Avatar
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    How Does Mitochondrial Dysfunction Affect CFS Patients?

    A study in Great Britain demonstrated that 70% of Chronic Fatigue Syndrome (CFS) patients have ultra structurally abnormal mitochondria. When the mitochondria are not working properly, the cells and tissues of the body are starved for energy. This will make the body rely on anaerobic metabolism, resulting in fatigue, muscle pain, poor concentration, gastrointestinal dysfunction, headaches, and poor recovery from exercise.
    This would've been my first guess. The solution would be to fix this dysfunction; I'm not sure how this could be accomplished. You can replace the blood with donor blood but mitochondria exist in every cell. How to fix the problem in muscle and brain tissue would be the challenge.
    Liberty means the ability to say "No thanks, perhaps later. I'm gonna go take a nap now."

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