New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Dormant vs activated immune system

Discussion in 'Immunological' started by Lissyleigh, Mar 6, 2017.

  1. Lissyleigh

    Lissyleigh

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    My experience of M.E has led me to believe that my immune system activates some or all of the time. In the last couple of years when I've been more stable, I feel exhausted all of the time, experience muscle fatigue and general aches and pains, but my immune system isn't so active. It's like that's my m.e equlibrium. When I overdo it or my system becomes stressed in some other way i,e change of diet, emotional stress, a virus or whatever, my immune system seems to activate. Then I experience fluey symptoms such as severe aching and cramping in legs, nausea all over my body (sick all over feeling), pain in neck and glands, sore throat and a fast heartbeat. I also feel generally weaker and I sweat a lot more. This is part of my PEM, but it's strongly immunological.

    When I was at my worst a few years ago i would have very strange episdes where the flu that triggered my m.e seemed to reactivate briefly during the night. Basically I would wake up, go to the toilet then suddenly I would feel sick and faint, the way someone does when they realise they have proper flu, and at times being unable to move back to bed. The episodes always passed after a few minutes, but usually left me feelng worse the next day. Only recently it has occured to me that those episodes were probably linked to low blood pressure as well. I don't get them so often now luckily.

    Right now I'm in an activated state for the first time in a few months. It interests me that as bad as I feel when I'm more stable, I feel much more fluey/virally compared to when I'm not. I've learned enough about my body to know I haven't caight an actual virus, more than my system is just overreacting.

    I just wondered if this sounds familiar to others?
     
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  2. Mohawk1995

    Mohawk1995 Senior Member

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    Sounds very familiar to what we experienced with our son. He had many "episodes" that appeared like illness, but we began to question whether they were truly a viral infection or an over-reactive immune system. It was difficult to tell especially initially. His symptoms for these episodes included sore throat, nasal congestion, sore/swollen glands, headaches and occasionally nausea. These were the same symptoms that accompanied his PEM as well.

    He did also occasionally become sick with a virus (something that looked different) or develop a sinus infection. He had more allergy problems both seasonal and to medications. This included one episode of anaphylaxis during routine allergy testing. He is now heading into his 4th year of recovery following successful treatment. We still have some anxiety when he gets sick (especially if it lingers or he has familiar symptoms), but it appears his immune system is responding much more "appropriately" at the moment.

    It seems to me that the latest evidence from Stanford and other research going on is pointing to an "over-activation" of protective mechanisms (cell danger response, anaphylaxis, Neuro-inflamatory agents, Killer Cells, etc...) and the metabolic/biochemical/functional consequences of this over-activation. Coming on too strong or staying on too long. That certainly fits with what you are describing. Big question is what is causing this over-activation and then how do we treat it? We are moving closer to that answer, but not fast enough for anyone who is suffering.
     
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  3. Lissyleigh

    Lissyleigh

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    Thanks for your reply. I'm sorry for what your son went through. Sadly I completely relate as I also get severe allergies and sinus issues that are worse during pem and times my immune system is more active. Fortunately I don't get anaphylactic symptoms. I posted about that and it was suggested I may have a mast cell disease as well, which does make a lot of sense because my body produces so much histamine. I completely agree with your last sentence- this research is urgent as do many of us have already suffered for many years. It is good that your son seems to be recovering at the moment. Can I ask what treatments he is having?
     
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  4. DeceptivelySlow

    DeceptivelySlow

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    I don't really know but I suspect a major player with some symptoms is loss of proper neurological control of the immune system which I think fits with the "E" part of ME. If this is the case, what is causing the nervous system to malfunction. Could this cause the metabolic dysfunction observed by Prof Davis and the Stanford team or is the metabolic dysfunction also causing neurological dysfunction. Needless to say, exciting how the Stanford team is on the path to narrowing down the cause.
     
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  5. Mohawk1995

    Mohawk1995 Senior Member

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    @Lissyleigh I will Message you to give you a complete account and my thoughts regarding it. Glad to share our experience but I want to be sensitive to the many others who are still struggling.
     
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  6. Lissyleigh

    Lissyleigh

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    That's absolutely fine thanks in advance for taking the time to explain.
     
  7. Lissyleigh

    Lissyleigh

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    Deceptivelyslow that makes sense what you say about the loss of control of the immune system. It's def gone a bit haywire. Im going to look into the research a bit more as I don't know much about it.
     
  8. DeceptivelySlow

    DeceptivelySlow

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    Lissyleigh, below is a link to a paper, although somewhat dated, on the role of the sympathetic nervous system and the immune system; not sure it will be of much help. I don't know enough to judge the quality of the paper; it does reference many older papers:

    http://pharmrev.aspetjournals.org/content/52/4/595.long
     
  9. Mohawk1995

    Mohawk1995 Senior Member

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    I am no expert in Neuro-immune complex, but do not discount something simply because it was written 16-17 years ago. What I can understand of this article links the Nervous System (Sympathetic) to the Immune system and literally makes them inseparable. This makes functional sense in what is being seen in the case of ME and Anaphylaxis.

    Worth reading (at least the parts I could understand!)
     
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