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posted by Fnord666 on Tuesday August 01 2017, @09:16PM   Printer-friendly
from the too-tired-to-say-any-more dept.

Arthur T Knackerbracket has found the following story:

Imagine feeling horribly sick, day after day, yet doctors repeatedly tell you they can't find anything wrong. That typically happens to people with the mysterious illness commonly known as chronic fatigue syndrome. Research findings from Stanford University released Monday could point the way to a long-sought diagnostic laboratory test for the condition, and possibly a first-ever treatment.

Believed to affect at least a million people in the U.S., the condition is now increasingly termed myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS for short.

Many patients see the name "chronic fatigue syndrome" as trivializing and misleading, giving the impression that they're simply tired or depressed. In fact, they're experiencing profound exhaustion that isn't relieved with sleep, flu-like symptoms, muscle pain, "brain fog" and various other physical symptoms, all of which characteristically worsen with even minor exertion. (A 2015 Institute of Medicine report proposed the name "systemic exertion intolerance disease," but it hasn't really stuck.)

The symptoms can range from mild to extremely severe, with about a quarter of patients so ill they're mostly or completely confined to bed. Now, the Stanford researchers have linked ME/CFS to variations in certain cytokines, immune-signaling proteins, that track with illness severity. The study results were published online Monday in the the Proceedings of the National Academy of Sciences.

-- submitted from IRC


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  • (Score: 3, Interesting) by Gaaark on Wednesday August 02 2017, @10:37AM (3 children)

    by Gaaark (41) on Wednesday August 02 2017, @10:37AM (#547892) Journal

    But have they tried it for long enough?

    We put our son on the gluten free diet due to behaviour/other (he is autistic). After a couple months, no change. After 6months, no change.
    After 9 months, we could MAYBE see one behaviour lessened.
    It took a full year to clear his system, but now he is completely different. No more laughing at nothing (the doctor says his system was changing the gluten into an opioid-like), no more regurgitation of food, etc.

    I finally went gluten free for my stomach, and now I find my joints ache far less, but it wasn't immediate.

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  • (Score: 2) by mojo chan on Wednesday August 02 2017, @12:36PM

    by mojo chan (266) on Wednesday August 02 2017, @12:36PM (#547912)

    Believe me. I have CFS. I've spoken to a lot of other people with CFS. Everything has been tried, for years and years. There is no cure. At best you can learn to live with it.

    --
    const int one = 65536; (Silvermoon, Texture.cs)
  • (Score: 3, Interesting) by edIII on Wednesday August 02 2017, @08:43PM (1 child)

    by edIII (791) on Wednesday August 02 2017, @08:43PM (#548106)

    Your coming into this with your assumptions. Most of them not wrong exactly, but exhaustively tried. It's like your an IT guy and walk into disaster recovery 20 hours in, and start asking questions and making statements about how they could try what they already tried in the 5th hour. I appreciate and believe it comes from a good place in your heart, but you don't have any clue.

    I've lived with it for about 10 years now. Everything that has been stated here I have tried. As for the gluten/GMO/sugar, I've largely succeeded with that. It's been about two years now, maybe more that I've been entirely gluten free. Already anti-GMO for many reasons, primarily the sloppy profit driven science and abhorrent intellectual property treatments. Nearly zero on the GMO. I'm really super stringent on GMO and HFS in the products I consume, and I was already that way 20 years ago. For a few years now I've been largely doing the Elimination diet. Did it pure and super strict for 90 days. I did feel better and started to shed weight. After a year I had reduced my body fat by half. The pain, neuropathy, brain fog, and fatigue didn't alter much at all. Heck, I even buy "organic" just to eliminate the poisons (pest control) and to try and lessen the negative effects it has on the environment.

    Ibuprofen helped a little, but now there are studies saying that a few years on >1000mg/day will give you heart problems later on in life. Yay. So I can't use that. Aspirin is a fucking joke. Seriously, it made me laugh. Other than a small nightly dose for my heart when I can remember to get them, I don't take Aspirin. Yes, I tried it.

    Life is pretty much endless pain. Oh yeah, the country is so completely fucked there exists really nothing to help me. I'm deliberately on medi-cal because I can't afford the >$1000/mo premium on my health insurance. That's assuming that they can do anything about it. My life is pain management, and I have severe side affects for all opiates except except the big one. That one gives me some side effects, but is manageable at half the normal dosage. It does relieve the pain, but that is because my whole body is fucking stoned. You can't live like that.

    All I have is weed. That's it, and it's not a cure. There are side effects from prolonged daily usage, and going off it for a week is really hard on me. To the extent I can't work or function. So stiff and sore I can barely make it to the bathroom. Pain management really means years of suffering with no answers, while slowly degrading.

    This is primarily why I'm leaving the U.S. Somebody like me has no meaningful assistance from the state, no hope of finding a cure, and the socioeconomic environment is purely anti-worker and filled with hate. Realistically, surviving in the U.S for the few decades I have left is too difficult because of this. I can't compete with other wage slaves for less than a living wage with a body that reminds me every second of its betrayal. It's not like anything is getting better for us, but in fact worse. Whatever health care bill is passed will be a monetary give away to rich people, which will directly result in less people being insured, less funding for people in my situation, and premiums so high that it only works when you are an employee with a large employer. That assumes you can even find a wage slave job, much less compete with the healthy 20 something applying for it as well. Since the majority of jobs are service work jobs, people that suffer from this have almost no chance.

    Funny as it may sound, my future is better in the middle of nowhere where I can bond together with some people in similar situations and we can eke out an existence as farmers. Survival is simply more likely in the middle of nowhere than it is in the U.S in its current state.

    This article gives me some hope, but as a person living in the U.S with it, we are still deeply fucked. Every night I get to sleep is a miracle that I made it through the day, how, I do not know.

    --
    Technically, lunchtime is at any moment. It's just a wave function.
    • (Score: 2) by Gaaark on Wednesday August 02 2017, @11:26PM

      by Gaaark (41) on Wednesday August 02 2017, @11:26PM (#548158) Journal

      No, sorry: I wasn't criticizing or anything. I was just basically saying it because my wife and I have heard from parents with autistic children who say they've tried the 'gluten free thing' with their kid and saw no change, and made one of them stop and rethink doing it again when we said it took us a full year to see change (they'd tried it for 'a couple weeks).

      No, I can't criticize. I'm pretty lucky health wise, and my son is sleeping pretty well now, so I'm lucky.

      Hope some help comes for you somehow.

      --
      --- Please remind me if I haven't been civil to you: I'm channeling MDC. ---Gaaark 2.0 ---