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First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME...
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new article on Post-exertional malaise

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Jody, Oct 27, 2009.

  1. Tammie

    Tammie Senior Member

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    article

    Nice job of conveying what PEM is like.....also nice job with the other articles you have written on there re CFS.....I can so relate, esp to the one about isolation and feeling like you are disappearing.

    I think that what the others meant re a light touch is that you do a great job of getting the point across w/o coming across like you are complaining or getting really heavy and depressing.
  2. Jody

    Jody Senior Member

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    Tammie,

    Thanks for the kind comments. Here, and on empowher, just now. :)

    I will tell you what I needed to hear when I felt afraid that I was disappearing and that nobody outside of my home would notice.

    You are NOT disappearing. You are not going to disappear. Even if there aren't people around you who care about you, you matter. You exist. You are a fertile field in and of yourself. You are a person who is growing, and developing and becoming. And though this is happening in painful, wounding isolation right now, you are growing roots, you are becoming stronger.

    You have had this experience, that will make you more sensitive to the hurts of others around you. You will recognize these hurts and respond to them because of what you've been through. And it is all because of this dark era you are going through yourself right now.

    You have a connection here, even if you have none anywhere else. And there are people here for you, as much and as often as you want or are able to participate in. We are here for you. :)

    Your story is NOT over. :)
  3. Jody

    Jody Senior Member

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    Tammie,

    Have you had a chance to look into any writing or proofreading? I remember you and I talked about that before. :)
  4. Tammie

    Tammie Senior Member

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    Jody

    Thanks for both of your replies. What you said about not disappearing does help some.

    I think it is bothering me a lot rt now bc of the holidays, and bc I have a Dr appt next week that I am going to have to cancel bc no one can/is willing to drive me there and I cannot make it myself. (My parents normally help with this but they are spending the winter in FL, and in the process of trying to find someone to help, I have been inadvertently reminding myself just how cut off from everyone I am - not that I needed to be reminded, but I think you know what I mean.)

    Plus, not to sound like I am whining, but it seems that there is help available (physical resources like; rides, help with grocery shopping, cleaning, etc, and financial assistance & discounts) for everyone else (inc seniors who may be in good health & younger people with other disabilities), but not for people between 25 - 55 yrs who are disabled due to chronic illnesses.....hard not to feel a bit forgotten and/or not valued with all that.

    As to the proofreading, I still would very much like to eventually try doing that, but I have been physically doing so bad, it just doesn't seem possible rt now. I can't write by hand at all, and I have been getting really nauseous, dizzy, etc, etc from spending too much time online. Sitting up and the light from the computer screen both seem to be culprits.
  5. Jody

    Jody Senior Member

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    Tammie,

    Sounds like a pretty tough situation you're dealing with right now. Rough to be without your support system at this point. And it is true, there is little available it seems for people in your / my age group. Sucks big time.

    As to the proofreading and writing, yeah, sounds like this is not the time for it. If it helps any, I went through an extended time when I couldn't do anything like that either. Didn't write anything for a number of years though I used to with no problem before I became really ill. In the past year, I have found that I can write, articles, posts here, and have been able to spend hours a day at my computer, and am making a little money every month writing for empowher.com.

    Hang in there. You may also recover from these particular symptoms and be able to get some of your life back. It can happen. Let's hope that it will. Just try to be patient and don't be afraid to keep your hopes up.
  6. starcycle

    starcycle Guest

    nice article!

    Before getting the viral-type of CFS, I had many bouts of postexertional malaise, and 4 or 5 serious crashes that put me in bed for 2-5 weeks each time, almost completely unable to function on any level.

    The regular PEM (I'll abbreviate it), all came after physical exertion. Last winter, before I had the more viral-type feeling of CFS, I got so stir crazy that I decided to try some walking. I walked to the end of my street (about 500 yards) and back every day for about 3 or 4 days. I didn't feel too bad from that, so I decided to extend it about double. Big mistake! I could probably walk about that distance at least throughout the day, but all at once and at a faster than normal pace it was too much and I crashed for a couple of days with increased fatigue and just completely BLAH. But with pacing myself, I could go most of the day doing things without crashing or too much PEM. It's only when going over the edge that I would have problems.

    The major PEM crashes all came as the result of emotional meltdown, mostly from toxic family interactions. Maybe those aren't even rightly described as postexertional malaise, but just functional adrenal failure or something like that. It's definitely neuroendocrine in origin, but what exactly is involved in maintaining the complete wipe out I don't really know. "Low cortisol" is the usual answer, but that is way too simplistic imo. If it were just that one could just take cortisol and bounce back immediately, but it's not like that at all. You just have to wait until the system comes back "online" itself.

    Now with the viral-type of CFS, I don't really know what to expect. My activity is severely limited relative to what it was before, the fatigue is constant and worse, and I seem to get extremely wiped out with PEM in a different way than before, and with much less activity. But it doesn't seem to be adrenal/HPAA mediated like the original fatigue (which is still there "underneath" this new fatigue, or alongside it).

    So I think there are actually several different mechanisms of PEM, one adrenal and neurohormonal, one cellular/mitochondrial, and one immunological. I also crash from thyroid hormone, and the answer most often given for that is also "low cortisol." But I noticed that was different from the cortisol crashes, too. That seemed to affect my muscles and heart, but didn't give the adrenal crash brain fog.

    What I think it has to do with is cellular carnitine levels or functioning, because hyperthyroid patients are carnitine deficient, and one of the parameters of the Myhill ATP profile test measures the fractionated amino acid functioning, including l-carnitine. And carnitine depletion would be expected to impact exactly what gets affected from adding thyroid: namely, skeletal and cardiac muscle, but not brain, which would be more acetyl-l carnitine.

    Those are my observations, at least. I wish I knew what caused this viral-type fatigue and PEM, I just know that it's different and apparently separate from the mitochondrial/cellular/neurohormonal fatigue. There's something else doing it, maybe involving those things to some degree, and neurobiology, but I don't have a sense of what it is yet. Nothing so far seems to impact it in a positive way, only negative by doing too much and getting the PEM.

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